Tis the season to be jolly ow ow ow ow owww ow ow ow owwwww
Another busy day after a busy week.
I had a great appointment with the occupational therapist from social services today who assessed me for a stair lift grant. The woman was absolutely wonderful but it was exhausting. I had to tell my whole story and I had to be honest, it is so much easier to put on a brave face!! Being honest when you're in as much pain as I am is exhausting! The superb news is though is that she has assessed that I have a 'critical need' and will be writing in her report that she thinks I need the stair lift.
After the meeting I had to make some mince pies to put in the hampers I do for my family. As I finished and was packing away my entire tub of flour fell out the cupboard. That's 2kg of flour all over my kitchen floor. It didn't just tip in a pile, oh no, it spread across the flour and what did I do? In my sheer frustration and screaming pain I threw the other one and that also tipped out. Well done Clo, great decision! (It's cringe worthy to openly admit such a thing but this is all about an honest account of life with a chronic illness so there you have it!)
So now, there was about 4kg of flour and 2kg of oats all over my kitchen floor! The oats fell out the cupboard just for good measure. I don't get cross very often, it's one of the things I am working on. Allowing myself to be angry about my illness. I am afraid of my own anger and I don't let myself connect to it so the throwing of the flour tub was a bit of a revelation for me! A really messy revelation but one none the less.
I don't know why I am afraid of allowing myself to get angry, I think maybe I see it as a very negative emotion and I am very much a glass half full kind of girl (amazingly!) I don't know, I just find it very difficult.
Anyway, I am working on allowing myself to feel angry and accept it's ok to feel like having this illness is not fair and that that doesn't make me a bad person nor does it mean I'm giving in or being a victim. It's just acknowledging that those emotions are natural and manageable.
I allowed myself a jolly good cry as I cleared it up and put myself to bed. My daughter and husband were out so I decided to take full advantage of a quiet house. This is huge step for me. All week I have felt so much (self induced) pressure to keep all the balls in the air so my husband can just concentrate on getting well, he's been really suffering with his arm injury. It's the first time he's had any sort of injury and I think he is genuinely quite shocked at just how much it hurts and how useless that is making him feel.
Anyone with Hypermobility Syndrome will know how dangerous it is for the body not to rest and today I gave in and collapsed into my bed at 6pm.
I love Christmas time, I love the entire advent season but it is one of the hardest times of year to feel so unwell. I have a deep desire to create every pin I have repinned for the past 12 months and yet my body holds no punches in punishing me for such reckless behaviour!
I have put myself under no pressure to 'over achieve' and to only do what I can but that doesn't take away the sense of loss that I can't do all the things I want to do. There is such an idea of perfection around Christmas and that makes it very tough if you're sick, grieving, out of work etc.
Fatigue is also beeatch this time of year, it's like someone is constantly on your back trying to pull you down and all you want to do is muster up the strength to stay up right!
I am pleased that I made the promise to myself at the beginning of advent not to strive for perfection this year but it's funny how just the extra things I am doing have driven home for me quite how dramatically my life has changed since I became disabled.
That's all I have in me tonight. It's now 10pm and just this short blog has taken me hours because I've had to break from it a few time to get various things done! Mainly washing, detangling and putting up my daughters hair that now reaches beyond her bottom when it's wet! If she tilts her head back it is actually at the back of her knees now!
Sorry this entrance is a rambling one!
Friday 20 December 2013
Tuesday 17 December 2013
Can I help you?
AAAAAAAAGGGGGGGGGGHHHHHHHHHHH.... and breathe!
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Dear Lord, what a bonkers few weeks!
The good news is that I have kept my promise to myself not to get carried away with the Christmas rush, I have applied exactly 0 pressure on myself and I am happy to achieve what I achieve when I achieve it and if something doesn't get done then so be it.
I had a good (albeit long!) trip to London for physiotherapy and hand therapy last week and I have been doing more filming and editing for my new YouTube channel which I am enjoying. It still feels a little overwhelming but it is a good overwhelming.
It all fell apart though when my husband hurt his arm and became virtually incapacitated! My gorgeous man that keeps us all going and ticking over has ground to a halt and I have had to spring into action myself! Any notion of this all important 'pacing' I here is so important in keeping my illness under control has flown out the window and a headless chicken does a better job of looking calm and together then I am at the minute!
Sunday was the most stressful day so far made no better by my mobility scooter breaking down... in the dark... in the pouring rain... on a zebra crossing!!
As I frantically tried to fix the damn thing the drivers (and passengers!) of the two cars that had stopped to let me pass over the zebra crossing just stared on in frustrated disbelief as this young disabled woman tried to sort herself out. Cars joined the queue and naturally I wanted the road to swallow me whole but more then, much more then that I NEEDED someone to help. As I took the battery on and off the scooter was it not painfully obvious that I had broken down?
Oh what I wouldn't have done to be able to get off that blasted thing and push it across the road to safety! Alas, if I could do that though I wouldn't need it now would I?
Eventually another car joined the queue and thank God for the two young lads that got out and offered to help! Never have I needed to hear those four beautiful words so much in my life... "Can I help you?"
The whole ordeal got me thinking, why is the idea of offering help to a stranger, disabled or not so terrifying? I myself have been guilty in the past of slightly hesitating to offer a stranger help when I thought they might need it but why? Do I fear offending them?
Is there a fear in all of us that by offering help to another we make ourselves vulnerable or is it that modern life demands so much of our attention we merely question if we have the time?
Perhaps we are all at capacity? Full to the very limit of what we can offer the world. I'd like to think though that somewhere in us all is the reserve that we can fall onto if we see someone in a potentially dangerous situation (I don't know, say like, on a mobility scooter, in the rain, and the dark...alone stranded on a road) We're not talking intervening in an armed robbery here lets be clear about that. I am talking about reaching something from a top self for someone who is vertically challenged (I once dared to call a friend of 5"2 'short' and was instantly corrected) or the classic helping the old lady cross the road.
Many a times I have seen a flash of sheer terror in someone's eye if one of my crutches falls to the floor "Oh god" I hear them think "Does she expect me to pick that up?" Of course the answer is no, I would never expect someone to pick it up but it's always a nice surprise when they do.
On the flip side to the 'stranded on the zebra crossing' incident I experienced on the weekend a few weeks ago I had been in the grocers buying my weekly supply of fruit of veg when the lady on the till (who I know well after years of shopping there) offered to carry it out to my mobility scooter for me (very kind) I progressed out the shop as there were a few people who needed serving and I had done all the standing I could cope with for a while when the old chap who had been behind me in the queue appeared a few minutes later with my shopping.
I thanked him and reached out to take the shopping and he said he insisted on carrying it home for me! He had apparently 'seen me around' and knew I only lived a short distance from his house. Now whoever said chivalry is dead has clearly not met this man and it made me a bit sad that I was so taken a back by his kindness I felt almost uncomfortable! Embarrassed by his willingness to go out of his way (literally, I actually live further then his house, he doesn't pass it to go home his house comes first) for little old me!
We actually had a lovely chat on the way home, I learned both he and his wife had been retired for some years now and were very proud grandparents with a great grandbaby on the way. Even dropping the shopping off in garden was no good for this chap, he walked it right up to the back door and put it in my kitchen.
As I sat in the pouring rain Sunday willing my scooter to move I would have done anything to see that old chaps face! After several minutes of 'Please God let this be over' I had different heroes of course, this time in the form of the two young men but what about all the other people in all the other cars? I wonder what they thought the outcome was going to be? Get out, get wet and be verbally abused by a disabled woman for DARING to offer help?
It may take an enormous amount of courage to offer someone help but I implore you, this festive season and the other 11 months of the year be brave, make a stand for chivalry and mutter those four all important words... Can I help you?
Saturday 7 December 2013
Fever!
That's the actual raging temperature rather then the classic song!
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
Man I am sick.
I went to bed Thursday night with a bit of a sore throat but woke up within a few hours and felt like I'd swallowed a packet of razor blades! My head was pounding and it wasn't long before I started being sick, shivering, sweating and feeling generally just really disorientated.
Tony rung the Dr out because there's no way I could have made it down the stairs and then sit in a waiting room. I don't really remember much about his visit and I am pretty sure I fell asleep before he left... whoops! That's a tad embarrassing! I've been put on two antibiotics in the hope that it will whip this infections butt and although I am less light sensitive today then I was yesterday this is definitely more then enough screen time. Retreating back under the duvet. Just sitting up in bed doing this has made my arms hurt.
Saturday 30 November 2013
It's beginning to look a lot like Christmas!
Tomorrow Advent descends upon us and the Christmas rush begins.
I should let you know right off the bat I adore the Advent season, from the Christmas lights to the Christmas cheer I throw myself into Christmas 110% every year. I love it.
I am not big on spending spending spending, in fact for the last few years I have spent less and less money in favour of making wonderful Christmas hampers for our nearest and dearest. Everything in them I make myself (or with my daughter) and they are full of chocolate truffles, shortbreads, sweets, sausage rolls, cheese straws a Christmas pudding and some homemade decorations. They seem to get bigger every year but for me it is the perfect opportunity to really get stuck into being creative!
There is ALWAYS a manic rush around the 22nd/23rd to wrap the hampers and get all the edible things in pretty bags with sparkly bows and I swear I won't do it the following year but alas so it goes on! Despite my yearly grumble (at some point in the hamper making process) I do really enjoy doing them and think it is so much more personal then if I were to go out and spend said much money. We live in a society that hoards so much 'stuff' I would much rather make people edible treats!
This year though I am promising myself a different kind of December. "The Christmas Hush" I am not going to burn myself out in the run up to the big day and I am promising myself a bit of 'me time' everyday. Even if it is only 30 minutes I pledge to myself as a little quiet time to do something just for me because to let you in on a little secret I am my own worst enemy!
I really haven't got a handle on listening to my body and stopping when it says stop. In fact, sometimes when my body says stop my mind says "No don't you dare give in! Keep going!" Of course what that does is add to the pain the next day! I am learning though and this advent I have promised that I am going to use this month to get better at waiting!
Waiting whilst my body has a break and regroups, waiting for aches and pains to pass, waiting patiently for sleep to come instead of getting agitated that it hasn't arrived yet. I am going to try really hard to be kind to myself. It the reoccurring thing I keep hearing from people, "You have to be kinder to yourself"
It is so easy to get caught up in the corporate Christmas that demands so much of our attention and bank balance and as the shops get busier but people's patience gets shorter it results in December becoming one of the most stressful months of the year for most people.
This year I am saying no to fretting and trying to create the 'Perfect Christmas' and saying a very big YES to having the best Christmas we can have within all of our current limitations. After all, when you reach perfection really the only way is down.
So, from me to you. I wish you a very relaxed, calm, enjoyable Advent.
Blessings
x x
I should let you know right off the bat I adore the Advent season, from the Christmas lights to the Christmas cheer I throw myself into Christmas 110% every year. I love it.
I am not big on spending spending spending, in fact for the last few years I have spent less and less money in favour of making wonderful Christmas hampers for our nearest and dearest. Everything in them I make myself (or with my daughter) and they are full of chocolate truffles, shortbreads, sweets, sausage rolls, cheese straws a Christmas pudding and some homemade decorations. They seem to get bigger every year but for me it is the perfect opportunity to really get stuck into being creative!
There is ALWAYS a manic rush around the 22nd/23rd to wrap the hampers and get all the edible things in pretty bags with sparkly bows and I swear I won't do it the following year but alas so it goes on! Despite my yearly grumble (at some point in the hamper making process) I do really enjoy doing them and think it is so much more personal then if I were to go out and spend said much money. We live in a society that hoards so much 'stuff' I would much rather make people edible treats!
This year though I am promising myself a different kind of December. "The Christmas Hush" I am not going to burn myself out in the run up to the big day and I am promising myself a bit of 'me time' everyday. Even if it is only 30 minutes I pledge to myself as a little quiet time to do something just for me because to let you in on a little secret I am my own worst enemy!
I really haven't got a handle on listening to my body and stopping when it says stop. In fact, sometimes when my body says stop my mind says "No don't you dare give in! Keep going!" Of course what that does is add to the pain the next day! I am learning though and this advent I have promised that I am going to use this month to get better at waiting!
Waiting whilst my body has a break and regroups, waiting for aches and pains to pass, waiting patiently for sleep to come instead of getting agitated that it hasn't arrived yet. I am going to try really hard to be kind to myself. It the reoccurring thing I keep hearing from people, "You have to be kinder to yourself"
It is so easy to get caught up in the corporate Christmas that demands so much of our attention and bank balance and as the shops get busier but people's patience gets shorter it results in December becoming one of the most stressful months of the year for most people.
This year I am saying no to fretting and trying to create the 'Perfect Christmas' and saying a very big YES to having the best Christmas we can have within all of our current limitations. After all, when you reach perfection really the only way is down.
So, from me to you. I wish you a very relaxed, calm, enjoyable Advent.
Blessings
x x
Monday 25 November 2013
Supporting someone with a chronic illness
I am sorry I haven't written for a while again, two big thins have happened in the past week so my attention as been elsewhere.
Firstly I have been doing a heap of research about various lifestyle changes that I can make to help improve my quality of life. My pain is consistently high at the moment and I really do not want this is be as good as it gets for me.
The other thing that has happened is that I have launched my YouTube channel. It is really daunting but I want to do something positive with my life and I guess the natural thing to do now if I wasn't sick would be to go back to work or find a community project to get involved with. As it is, I am sick and having to learn to live with this illness but I still have a desire to achieve something. So I guess making films about living with chronic illness and exploring alternative therapies gives me a purpose and also will hopefully help improve my quality of life.
Today I posted a video about supporting someone with a chronic illness and I want to follow that up with a written blog also.
So my first 5 tips for supporting a loved one living with chronic illness...
Number 1.
Learn about the persons disease. Get yourself to the library or search through Amazon but get yourself educated! It will mean a lot to the sufferer if you take time to learn about what they are going through. HOWEVER do NOT become an expert! By suggesting you learn about the disease I am not suggesting you then try to educate the patient!
Number 2.
Be inspirational, Personally I love poetry so when I found a book at my mums house that was a composition of various poems written by people suffering with chronic illnesses I felt really inspired to start writing again. Trying to connect the illness to something the sufferer has een involved with in the past can be really inspiring! Get thinking!
Number 3. Remind the person with the illness that they are important! When you feel ill ALL the time it is really easy to question your self worth. Remind the person how important they are to you and how important they are in general!
Number 4. GO VISIT! Just because your loved one can't continue to meet you in the coffee house etc does not mean they don't want to see you! Look, let's face it, if you were going to meet the person out somewhere you can meet them at their house. GO KNOCK ON THE DOOR and respect that they might not want to get out! We all know what our bodies are capable of, don't try to make someone feel bad about needing to stay home! If they could leave the house and come with you then they would! Trust me! I know when I am having an awful symptom day 'Fresh air' is not going to magically make me feel better, spending time with another person might but luging myself out the house and into a coffee shop will more then likely just make my physical symptoms worse! Please respect that people with chronic illness do their best to live varied lives. If someone is having to stay home and you had plans then GO TO THEM!
Number 5. Pick up the phone on the day there are big hospital appointments. The person may be too exhausted to explain it all but it will really show that you care. It really is the little things that make a BIG difference when you're going through a tough stage on your life!
I am going to have to stop there today I am afraid :-( I have a really awful headache and the screen is making it quite a bit worse!
Blessings everyone
x x x x
Firstly I have been doing a heap of research about various lifestyle changes that I can make to help improve my quality of life. My pain is consistently high at the moment and I really do not want this is be as good as it gets for me.
The other thing that has happened is that I have launched my YouTube channel. It is really daunting but I want to do something positive with my life and I guess the natural thing to do now if I wasn't sick would be to go back to work or find a community project to get involved with. As it is, I am sick and having to learn to live with this illness but I still have a desire to achieve something. So I guess making films about living with chronic illness and exploring alternative therapies gives me a purpose and also will hopefully help improve my quality of life.
Today I posted a video about supporting someone with a chronic illness and I want to follow that up with a written blog also.
So my first 5 tips for supporting a loved one living with chronic illness...
Number 1.
Learn about the persons disease. Get yourself to the library or search through Amazon but get yourself educated! It will mean a lot to the sufferer if you take time to learn about what they are going through. HOWEVER do NOT become an expert! By suggesting you learn about the disease I am not suggesting you then try to educate the patient!
Number 2.
Be inspirational, Personally I love poetry so when I found a book at my mums house that was a composition of various poems written by people suffering with chronic illnesses I felt really inspired to start writing again. Trying to connect the illness to something the sufferer has een involved with in the past can be really inspiring! Get thinking!
Number 3. Remind the person with the illness that they are important! When you feel ill ALL the time it is really easy to question your self worth. Remind the person how important they are to you and how important they are in general!
Number 4. GO VISIT! Just because your loved one can't continue to meet you in the coffee house etc does not mean they don't want to see you! Look, let's face it, if you were going to meet the person out somewhere you can meet them at their house. GO KNOCK ON THE DOOR and respect that they might not want to get out! We all know what our bodies are capable of, don't try to make someone feel bad about needing to stay home! If they could leave the house and come with you then they would! Trust me! I know when I am having an awful symptom day 'Fresh air' is not going to magically make me feel better, spending time with another person might but luging myself out the house and into a coffee shop will more then likely just make my physical symptoms worse! Please respect that people with chronic illness do their best to live varied lives. If someone is having to stay home and you had plans then GO TO THEM!
Number 5. Pick up the phone on the day there are big hospital appointments. The person may be too exhausted to explain it all but it will really show that you care. It really is the little things that make a BIG difference when you're going through a tough stage on your life!
I am going to have to stop there today I am afraid :-( I have a really awful headache and the screen is making it quite a bit worse!
Blessings everyone
x x x x
Tuesday 19 November 2013
Nailed it
Today was a really good day. I woke up at 4.30am (not a flying start to the day) took some pain killers and knew pretty much straight away that there was absolutely no way I was going to get back to sleep before my alarm went off at 6am but instead of getting irritated I snuggled deep under the duvet and watched some of my favourite content creators on YouTube.
There are so many inspiring people on there, if you can sift through all the pointless videos and get to the proper channels it's really being used as a platform for change now and I love that. My absolute favourites at the moment are EcoVeganGal, (www.ecovegangal.com) Jason Wrobel (www.jasonwrobel.com) and The Vegan Zombie (www.theveganzombie.com) There are all of these videos of people trying to have a positive impact on our planet and their immediate world and it's really inspiring. It's actually making me think maybe I could turn my journey of health into a vlog as well as a blog. Just to put it out there for anyone else living with this condition. It would mean I could keep it going when my hands are too painful to type which would be fantastic.
I've been thinking about vlogging for a while but the idea of talking on camera fills me with dread! I do however have a real desire to share my journey living with chronic illness. I want people who are where I was 18 months ago to be able to read or watch and maybe feel less hopeless? I've also found it really difficult myself to read about other peoples experiences and how it effects them day to day because people either tend to write when it's going really well or when it's all falling apart and there is A LOT of in between that isn't captured.
I have been made aware that I associate my self worth with what I can do physically and I am working really hard to change that. I think because I feel slightly abandoned sometimes which only began when I was unable to physically give to other people it's had a real affect on my confidence, perhaps more then I have been willing to identity.
It isn't about being all happy clappy and look at what I'm achieving despite my body working against me so much but I suppose 'This is what it's like'. It's really difficult to be honest with people around you (and yourself) when you're ill ALL the time because you can end up sounding like a broken record and some people believe it can't possibly be as bad as all that! I think when you live with a genetic disease it goes against this need in our society for people to 'get well', by having a chronic illness you are going against peoples desire to see you return to full health and that can feel really judgemental sometimes. Like, really, do you think if there was anything I could do to make this situation better I wouldn't be doing it?
All that being said though it really makes you strive to find things to be passionate about and I think if you can learn to channel that passion into something positive then you can begin to heal the hurts of not really knowing what you have to offer people anymore. I know for me personally is perhaps one of the biggest emotional injuries of this time in my life.
I am also right at the very beginning of my journey and although I've been on crutches and my hips have been painful for 20 months now (and I have had painful health complaints for the past 10 years) I literally just got diagnosed so I feel like now seems to be like the perfect time to start cataloguing this in a variety of places. I know I have many life lessons to learn and I think I like the idea of being able to look back on those in years to come when hopefully I am doing a much better job of managing this.
It is making yourself really vulnerable though and I don't know anyone who would do that without any thought going into it, I just, I suppose I'm feeling drawn to creating a really honest project that might promote understanding and acceptance for other people living with chronic illness and disability... we'll see.
There are so many inspiring people on there, if you can sift through all the pointless videos and get to the proper channels it's really being used as a platform for change now and I love that. My absolute favourites at the moment are EcoVeganGal, (www.ecovegangal.com) Jason Wrobel (www.jasonwrobel.com) and The Vegan Zombie (www.theveganzombie.com) There are all of these videos of people trying to have a positive impact on our planet and their immediate world and it's really inspiring. It's actually making me think maybe I could turn my journey of health into a vlog as well as a blog. Just to put it out there for anyone else living with this condition. It would mean I could keep it going when my hands are too painful to type which would be fantastic.
I've been thinking about vlogging for a while but the idea of talking on camera fills me with dread! I do however have a real desire to share my journey living with chronic illness. I want people who are where I was 18 months ago to be able to read or watch and maybe feel less hopeless? I've also found it really difficult myself to read about other peoples experiences and how it effects them day to day because people either tend to write when it's going really well or when it's all falling apart and there is A LOT of in between that isn't captured.
I have been made aware that I associate my self worth with what I can do physically and I am working really hard to change that. I think because I feel slightly abandoned sometimes which only began when I was unable to physically give to other people it's had a real affect on my confidence, perhaps more then I have been willing to identity.
It isn't about being all happy clappy and look at what I'm achieving despite my body working against me so much but I suppose 'This is what it's like'. It's really difficult to be honest with people around you (and yourself) when you're ill ALL the time because you can end up sounding like a broken record and some people believe it can't possibly be as bad as all that! I think when you live with a genetic disease it goes against this need in our society for people to 'get well', by having a chronic illness you are going against peoples desire to see you return to full health and that can feel really judgemental sometimes. Like, really, do you think if there was anything I could do to make this situation better I wouldn't be doing it?
All that being said though it really makes you strive to find things to be passionate about and I think if you can learn to channel that passion into something positive then you can begin to heal the hurts of not really knowing what you have to offer people anymore. I know for me personally is perhaps one of the biggest emotional injuries of this time in my life.
I am also right at the very beginning of my journey and although I've been on crutches and my hips have been painful for 20 months now (and I have had painful health complaints for the past 10 years) I literally just got diagnosed so I feel like now seems to be like the perfect time to start cataloguing this in a variety of places. I know I have many life lessons to learn and I think I like the idea of being able to look back on those in years to come when hopefully I am doing a much better job of managing this.
It is making yourself really vulnerable though and I don't know anyone who would do that without any thought going into it, I just, I suppose I'm feeling drawn to creating a really honest project that might promote understanding and acceptance for other people living with chronic illness and disability... we'll see.
Monday 18 November 2013
When your body says no
This is something I am really having to learn to live with. I thought I was very good at listening to my body and taking signs and signals from it but of course that was before my body stopped doing what I wanted it to do! It's easy to think you're working well with something, well as long as you're getting your own way! How you deal with it when it stops going your way, well, that is the measure of a person!
So, uncomfortable truth time. My mind and my body are SO disconnected now I actually refer to my own body as if it belongs to someone else. 'It' rather then 'I', 'my body feels' rather then 'I feel'. I am the stubborn child sitting on the floor with my fingers in my ears singing 'LA LA LA I'M NOT LISTNING' I have no relationship with my body and I am having to try really bloody hard to rebuild the scattered fragments that were once 'oneness'. Are you still with me?
I never considered that one could feel detached from ones own body until this all started but alas you'll have to trust me on this one. You know, a lot of hypermobility syndrome patients actually refer to their own bodies as the enemy!
If you asked me to describe my body to you I would say "It's unreliable, it hurts me all the time, it never does what I need it to do and quite frankly I don't trust it anymore" Lets face it, if I was telling you about my new boyfriend you'd tell me to leave him pretty quick!
Can we just get this one thing really clear. This is NOT a self esteem thing, this is not "I feel fat and ugly and I hate my body, look at my minging stress marks" This is "My body works against me and I don't want to be it's friend anymore!"
Example time, lets talk Subluxations. Oooo it's a saucy word isn't it? "Subluxations" Go on, say it out loud a few times, it's a good word to get the mouth round.
Do you know what it is? It is a partial or incomplete dislocation (sexy!!) and let me tell you, they aren't comfortable!
My husband and I had a giggle the other night because I got out of bed put my feet on the floor and four of my toes 'went', I stood up and my ankle went, I walked to the bathroom and my knee went, I sat down my other ankle went and then in a grand finale my hip popped. I was literally making music with my body. It was 8 subluxations in about 3 minutes which is quite something even for me. Each one needs tempting back into socket but it is a great example of exactly how unstable my body is.
Why... why would I trust such a thing!
If I wake in the night or in the morning before I get up I do a bit of a mental check list to feel where my joints are (they are always where they are meant to be!) sometimes it's a case of a click here and a click there, a click this and click that and I'm ready to get up. Now, I've done this for probably, well, since I had my daughter, it was just normal and I have been popping my hips and thumbs all my life. I've never even considered that this isn't the 'norm' until I saw it in a video created by another HMS sufferer.
I had my nephew on my lap the other day doing the auntie gig and out of nowhere my rib popped out, I'm not entirely sure (being blinded by pain) how I secured him ('him' being my GORGEOUS nephew) on to the lap of the woman sitting next to me but I did and somewhat frantically tried to relocate myself whilst trying not to A: Make a scene B: Make anyone who was aware of what was going on reacquaint with their breakfast and C: Puncture a lung.
I have no control over these little (Little she says!) subluxations and it doesn't really make me feel like my body is to be trusted. Although the pain is insane I know what I have to do is remain calm and relocate it but it can be really hard when you're in a shop and drop something, bend down to pick it up and semi dislocate your hip (for one thing it makes quite the clunk) "And breathe through the pain, wiggle the joint back into socket and try to calm down the members of public around you who have twigged what is going on" Awww, it's a laugh a minute!
So that begins to explain why I don't trust my body but what other factors are there in this disconnection?
Well, I can have the most wonderful plans (like going to a civil ceremony of two wonderful friends that I have been looking forward to for months) and my body will just not calm down. Things that don't normally swell, swell, the pain just buries itself deeper and deeper into my joints and muscle fatigue makes me feel like I've put on 20 stone in my sleep. My body doesn't care what my plans are if it's going to have a flare up there is nothing I can do but surrender to the 'comfort' of my bed and sit. Oh also, as wonderful as a day or week in bed sounds to you this is absolutely not the same thing. I know every busy mum out there would do just about anything for a day in bed but please believe me I want your health and ability more then you want a day in bed.
Today I have had to spend nearly all day sat on my bed excluding: washing my daughters hair, preparing lunch, putting some washing away and preparing tea. All the activity was almost at breathe taking pain levels but oh my LORD I want to be able to 'do' and 'be' and just have a normal day! (Not that I can claim I have ever been acquainted with normality but that's a whole other story!)
It dawned on me on Friday that I don't remember what it is like to walk without crutches. Sure, I can do a few paces but I mean to like, walk into town or 'go for a walk'. If I close my eyes I can see myself doing it but I can't really remember what it feels like.
It's really hard not to resent something that takes away so many nice things from you. Even if that 'thing' is your body!
Anyway I am trying to heal the rift between body and mind but there is no cure for hypermobility syndrome so this is going to be a relationship I am in for the rest of my life. Like it or not!
I honour my body with what I eat and drink and am actually very particular about nourishing myself but this is more then that. This is what my body gives back to me.
So I guess, in conclusion sometimes my body just says no and I have to learn to say 'Ok... you win'
So, uncomfortable truth time. My mind and my body are SO disconnected now I actually refer to my own body as if it belongs to someone else. 'It' rather then 'I', 'my body feels' rather then 'I feel'. I am the stubborn child sitting on the floor with my fingers in my ears singing 'LA LA LA I'M NOT LISTNING' I have no relationship with my body and I am having to try really bloody hard to rebuild the scattered fragments that were once 'oneness'. Are you still with me?
I never considered that one could feel detached from ones own body until this all started but alas you'll have to trust me on this one. You know, a lot of hypermobility syndrome patients actually refer to their own bodies as the enemy!
If you asked me to describe my body to you I would say "It's unreliable, it hurts me all the time, it never does what I need it to do and quite frankly I don't trust it anymore" Lets face it, if I was telling you about my new boyfriend you'd tell me to leave him pretty quick!
Can we just get this one thing really clear. This is NOT a self esteem thing, this is not "I feel fat and ugly and I hate my body, look at my minging stress marks" This is "My body works against me and I don't want to be it's friend anymore!"
Example time, lets talk Subluxations. Oooo it's a saucy word isn't it? "Subluxations" Go on, say it out loud a few times, it's a good word to get the mouth round.
Do you know what it is? It is a partial or incomplete dislocation (sexy!!) and let me tell you, they aren't comfortable!
My husband and I had a giggle the other night because I got out of bed put my feet on the floor and four of my toes 'went', I stood up and my ankle went, I walked to the bathroom and my knee went, I sat down my other ankle went and then in a grand finale my hip popped. I was literally making music with my body. It was 8 subluxations in about 3 minutes which is quite something even for me. Each one needs tempting back into socket but it is a great example of exactly how unstable my body is.
Why... why would I trust such a thing!
If I wake in the night or in the morning before I get up I do a bit of a mental check list to feel where my joints are (they are always where they are meant to be!) sometimes it's a case of a click here and a click there, a click this and click that and I'm ready to get up. Now, I've done this for probably, well, since I had my daughter, it was just normal and I have been popping my hips and thumbs all my life. I've never even considered that this isn't the 'norm' until I saw it in a video created by another HMS sufferer.
I had my nephew on my lap the other day doing the auntie gig and out of nowhere my rib popped out, I'm not entirely sure (being blinded by pain) how I secured him ('him' being my GORGEOUS nephew) on to the lap of the woman sitting next to me but I did and somewhat frantically tried to relocate myself whilst trying not to A: Make a scene B: Make anyone who was aware of what was going on reacquaint with their breakfast and C: Puncture a lung.
I have no control over these little (Little she says!) subluxations and it doesn't really make me feel like my body is to be trusted. Although the pain is insane I know what I have to do is remain calm and relocate it but it can be really hard when you're in a shop and drop something, bend down to pick it up and semi dislocate your hip (for one thing it makes quite the clunk) "And breathe through the pain, wiggle the joint back into socket and try to calm down the members of public around you who have twigged what is going on" Awww, it's a laugh a minute!
So that begins to explain why I don't trust my body but what other factors are there in this disconnection?
Well, I can have the most wonderful plans (like going to a civil ceremony of two wonderful friends that I have been looking forward to for months) and my body will just not calm down. Things that don't normally swell, swell, the pain just buries itself deeper and deeper into my joints and muscle fatigue makes me feel like I've put on 20 stone in my sleep. My body doesn't care what my plans are if it's going to have a flare up there is nothing I can do but surrender to the 'comfort' of my bed and sit. Oh also, as wonderful as a day or week in bed sounds to you this is absolutely not the same thing. I know every busy mum out there would do just about anything for a day in bed but please believe me I want your health and ability more then you want a day in bed.
Today I have had to spend nearly all day sat on my bed excluding: washing my daughters hair, preparing lunch, putting some washing away and preparing tea. All the activity was almost at breathe taking pain levels but oh my LORD I want to be able to 'do' and 'be' and just have a normal day! (Not that I can claim I have ever been acquainted with normality but that's a whole other story!)
It dawned on me on Friday that I don't remember what it is like to walk without crutches. Sure, I can do a few paces but I mean to like, walk into town or 'go for a walk'. If I close my eyes I can see myself doing it but I can't really remember what it feels like.
It's really hard not to resent something that takes away so many nice things from you. Even if that 'thing' is your body!
Anyway I am trying to heal the rift between body and mind but there is no cure for hypermobility syndrome so this is going to be a relationship I am in for the rest of my life. Like it or not!
I honour my body with what I eat and drink and am actually very particular about nourishing myself but this is more then that. This is what my body gives back to me.
So I guess, in conclusion sometimes my body just says no and I have to learn to say 'Ok... you win'
Sunday 17 November 2013
Keep the looks to yourself... rant
It has been a while since I have updated here because it has been really intense since I had the hip blocks. There are but a few words to describe that little ordeal.... HOLY MOLY CHEESE AND WHISKERS has it made things WORSE!! Dear Lord the pain, it has this way of making me think it is the worst it could possibly be then it gets WORSE. There have been days since the hip blocks I think it is going to cost me my sanity! I'm doing my mindfulness exercises to try to put it into perspective and not let it make me anxious but boy this is BIG pain now all the time, I seem to be stuck on an 8-10. It's that sort of all consuming pain that makes it harder and harder to put on a brave face. Last week I thought I did pretty well at getting on but two separate people said to me "Are you ok? I saw you the other say from a distance and you looked really ill/tired"
I have had two hospital appointments in London (which involves a lot of travel from Dorset) which hasn't helped at all (physically) although both appointments have been really positive. You know, as positive as they can be when you have a chronic disease! Haha! ;-)
I now know that the Hypermobility Syndrome is 'extensive' and 'significant' and that it is affecting pretty much my entire body significantly bar my elbows (go elbows! woo!) I have been referred on to see consultants about my eye sight, my feet, my hands and my bowel. I have also been referred to hydrotherapy, a programme especially for people with HMS and EDS and will possibly be sent for in patient rehabilitation. It was the first time (bar my fabulous hip specialist who I started seeing in August) that I have felt I have really been listened to by a consultant at hospital. Not only did she listen she confirmed and affirmed everything that I said about the way my body works and feels and the crazy things it does.
It was also confirmed that the surgery I had on my hip last year will have definitely made my right hip worse and that isn't in my head. I KNEW it was worse but explaining that to people can be really frustrating.
So why the title of this blog? Well, I want to have a little rant. I am not one for ranting or confrontation or 'telling people how it is' in fact I generally shy away from all three HOWEVER here I go...
There are some people sadly who feel that it is their right to judge a disabled person because CLEARLY they can tell the persons extensive medical history just by looking at them and they're not sick really are they? They are just lazy. They believe they have the right to decide that if a person is in a wheelchair or on a mobility scooter they aren't equal to them and it's ok to treat them differently. (Not at all helped by our current governments attitude to disabled people) Well guess what? (If you are a decent human being, as I'm sure you are, you will know the answer to this!) The person you are looking down your nose at has as much right to be where ever it is you are as you do and they have feelings too. Giving them a 'oh you disgusting non human' look will likely stay with that person all day and I see absolutely no need for it.
It's typical bully syndrome. They pick on people 'weaker' then themselves who wouldn't have a fair chance of 'fighting' back and it is outrageous. God I wish I had the strength in me to stand up for myself when people make crude remarks or give me filthy looks. I wish I could publically shame them for the discriminative nasty's that they are but I am yet to build up the 'thick skin' required to deliver such a come back.
People are shocked and taken a back when I tell them about the 'looks' and the comments that I get but it happens all the time, probably once an outing and it's making it really difficult to want to go out. I LOVE my home town and I have always got such a buzz from being out and about in it but when the pain is physically as bad as it has been recently it's really hard to potentially set yourself up for a dose of emotional pain! I get a lot of 'You have to keep going out and learn to live with this' from people who don't necessarily understand that it isn't as easy as that and I know their intentions are good ones but what I really need are people who will say to me 'Don't fancy going out today, I'll come to you'
Back in the spring I would find it really hurtful that people would actually get cross and become distant with me if I said no to an invitation say two or three times and I realised they gave up on me altogether but especially when the town is full of tourists it's really hard to find the bravery to head out, throw in the brain fog that is triggered by the stress of getting such looks and comments and a simple coffee or nip to the shops can turn into an overwhelming experience!
I am going to have to be really kind to my body this week and take it really easy physically. I am working on not equating what I can do physically to how I feel emotionally and have started doing more small scale crafts again so I can sit on the bed and give my body that physical rest it desperately needs when the pain is this bad but keep the old brain engaged in nice things! I will also hopefully have more time and energy to start writing this daily again. I don't want to just update it once or twice a month!
Blessings x x
I have had two hospital appointments in London (which involves a lot of travel from Dorset) which hasn't helped at all (physically) although both appointments have been really positive. You know, as positive as they can be when you have a chronic disease! Haha! ;-)
I now know that the Hypermobility Syndrome is 'extensive' and 'significant' and that it is affecting pretty much my entire body significantly bar my elbows (go elbows! woo!) I have been referred on to see consultants about my eye sight, my feet, my hands and my bowel. I have also been referred to hydrotherapy, a programme especially for people with HMS and EDS and will possibly be sent for in patient rehabilitation. It was the first time (bar my fabulous hip specialist who I started seeing in August) that I have felt I have really been listened to by a consultant at hospital. Not only did she listen she confirmed and affirmed everything that I said about the way my body works and feels and the crazy things it does.
It was also confirmed that the surgery I had on my hip last year will have definitely made my right hip worse and that isn't in my head. I KNEW it was worse but explaining that to people can be really frustrating.
So why the title of this blog? Well, I want to have a little rant. I am not one for ranting or confrontation or 'telling people how it is' in fact I generally shy away from all three HOWEVER here I go...
There are some people sadly who feel that it is their right to judge a disabled person because CLEARLY they can tell the persons extensive medical history just by looking at them and they're not sick really are they? They are just lazy. They believe they have the right to decide that if a person is in a wheelchair or on a mobility scooter they aren't equal to them and it's ok to treat them differently. (Not at all helped by our current governments attitude to disabled people) Well guess what? (If you are a decent human being, as I'm sure you are, you will know the answer to this!) The person you are looking down your nose at has as much right to be where ever it is you are as you do and they have feelings too. Giving them a 'oh you disgusting non human' look will likely stay with that person all day and I see absolutely no need for it.
It's typical bully syndrome. They pick on people 'weaker' then themselves who wouldn't have a fair chance of 'fighting' back and it is outrageous. God I wish I had the strength in me to stand up for myself when people make crude remarks or give me filthy looks. I wish I could publically shame them for the discriminative nasty's that they are but I am yet to build up the 'thick skin' required to deliver such a come back.
People are shocked and taken a back when I tell them about the 'looks' and the comments that I get but it happens all the time, probably once an outing and it's making it really difficult to want to go out. I LOVE my home town and I have always got such a buzz from being out and about in it but when the pain is physically as bad as it has been recently it's really hard to potentially set yourself up for a dose of emotional pain! I get a lot of 'You have to keep going out and learn to live with this' from people who don't necessarily understand that it isn't as easy as that and I know their intentions are good ones but what I really need are people who will say to me 'Don't fancy going out today, I'll come to you'
Back in the spring I would find it really hurtful that people would actually get cross and become distant with me if I said no to an invitation say two or three times and I realised they gave up on me altogether but especially when the town is full of tourists it's really hard to find the bravery to head out, throw in the brain fog that is triggered by the stress of getting such looks and comments and a simple coffee or nip to the shops can turn into an overwhelming experience!
I am going to have to be really kind to my body this week and take it really easy physically. I am working on not equating what I can do physically to how I feel emotionally and have started doing more small scale crafts again so I can sit on the bed and give my body that physical rest it desperately needs when the pain is this bad but keep the old brain engaged in nice things! I will also hopefully have more time and energy to start writing this daily again. I don't want to just update it once or twice a month!
Blessings x x
Sunday 3 November 2013
Holding on!
Dear Lord what a few weeks! I still don't think I've caught up with myself.
I had the double hip blocks two weeks ago (big needles straight into the old hip joints) and as of yet I think it's fair to say that was a massive mistake.
I knew it would be sore but nothing could have prepared me for quite how bad it would be! At the moment the pain is still worse then it was before. I am so over this!
One of the injections went in with no trouble and although it hurt like a *beep* it was endurable. The left side though, holy gajeebers, it took a lot longer to go in and was insanely painful. The team were wonderful and the doctor was fantastic, he knew that things weren't going exactly to plan and was very kind. I was wheeled back to the recovery room on the bed instead of having to walk (at the doctors request) and had to transfer straight into my wheelchair to go home. The journey back wasn't very nice. It took about 50 minutes and I felt every bump in the road! I told Tony to just go straight, no bends, no turns but you know he insisted on keeping to the road markings! Honestly! So unreasonable!! ;-)
I think because the left side was more complicated I some how ended up with really bad backache on top of the usual hip pain and although I'm still waiting for it to subside completely it isn't as bad as it was on the car ride home.
I had to use the wheelchair right up to the house and when I tried to climb the stairs my legs went and I stumbled forward, it became pretty clear that there was no way I was going to make it up the stairs so rather then a night on the sofa Tony picked me up, threw me over his shoulder (I say threw... he was a bit more gentle then that!) and gave me a fireman's lift up the stairs in to the bedroom!
That night I got two hours sleep in one hour intervals. The pain was so intense, weirdly my feet hurt and my wrists felt like the circulation had been cut off. I think it must be where I was tensing my hands and feet so much to help me through the actual procedure. Talking about 'getting through it' I laughed the whole bloody time they were injecting me, how ridiculous is that?! I guess when you're body is going through something kind of traumatic you can go one of two ways, cry and panic or laugh hysterically... well, I laughed hysterically and wriggled my toes within a inch of their life!!
That whole week the pain got worse daily, the third day was horrendous, it also happened to be our wedding anniversary and I pretty much cried all day!! My body was just exhausted and the pain was relentless. It was without a doubt the worst pain week I have ever experienced, including the week post op last year!
One day I sat and wrote exactly what it felt like at its worst, I felt like I was going out of my pain with physical pain penetrating every joint and I wanted to capture exactly how that is. I never share how I feel when I am in that state of mind and one day I will share it on here but it's going to be a really big thing for me to do. It's a pretty big thing, to share really how bad the bad times are. I can write about them like I am now with a clear head on reflection but this was me hammering on the keypad as my body screamed at me!
So it was 6 days in bed and I was too poorly to care. Normally that would drive me MAD but honestly, I couldn't muster up the energy to be bothered!
On the Sunday after the injections a friend of mine was having a party for the children which we were invited too, I knew my daughter would go anyway but I really wanted to go. I had been looking forward to it so much that I didn't want to miss it. The thing I have learned is sometimes I have to put myself through something physically horrible to pick my spirit up and this was definitely one of those things! We had a wonderful time and I had a good laugh. I am so glad we went.
The other thing I forced myself to do was attend our daughters first parents evening. It was the day after the injections and I was meant to be on strict bed rest but there was no way I could miss it. Her teacher had offered to call but I knew in a few months time I won't really be able to remember just how bad the pain was but I will very much remember missing her first parents evening.
I had to go in the wheelchair but I am glad we went. The feed back was wonderful, Amelia-Rose is doing great, she's made lots of friends and the teacher is impressed with how much she commits to a task when she's asked to do it. I'm not surprised but it was nice to hear, she absolutely loves being at school and has been ready for a long time. As of tomorrow she will be in full time which I am very sad about but she is super excited about. It's the end of an era and I am aware that never again will we have the precious time together we have had the past 4 years. I know we're on an exciting new path but god I am going to miss her. I have loved being a stay at home mother and spending all my days with her, crafting, baking, playing, learning, going on adventures to imaginary lands.
I think it's different if you have two children, when the oldest goes to school you begin the journey of special one to one time with the youngest but if you only have one you do everything just once. When you stop breastfeeding that's it, you won't do it again, when they potty train that's it you're done with nappies and when they start school that's it! 6 hours a day to fill.
I know most parents would LOVE 6 hours to themselves but it's just really daunting to me. I can't find a little job or finish my degree. I am going to try to do some more crafts and baking and of course keep writing and work on promoting my album but none of that will come close to spending quality time with Amelia-Rose.
On a positive note though I hope it will give me more time to rest so that the time I do still get with her can be really high quality. The pain and fatigue can mean sometimes I find Amelia-Rose a little intense which makes me so sad. I use to be able to match her energy and now I can't even come close. With all the extra 'quiet' time I hope we'll be able to do more of the stuff we use to because I will be able to distribute my energy more.
So, what else has happened in the past 10 days? Oh I know! On Friday we had an Autumn Celebration craft party. Amelia-Rose had 7 friends over and we did lots of cute crafts and played 'Pinned the leaves on the tree' The children all had a wonderful time and I got to be creative with my baking! I was so pleased with the way the baked goods came out! It was such a fun party and we (ok ok me) are already planning the Christmas one!
I have a hospital appointment in London this week, we are travelling to stay with my grandparents in Swindon over night Thursday and will get on the train to London Friday morning. I am feel ok about this appointment because I've already met the Dr and although I hate being away from Amelia-Rose it should be fairly straight forward.
I also have an appointment in London the following Friday and I am most definitely not ok about that one. For one thing it is a peak train journey so if we do it it will cost us £250 in train fare alone. It's such a lot of money and you just know the train is going to be packed which isn't so nice when you're sitting in a wheelchair!
I don't know why I have such a mental block about this appointment but I literally cannot talk about it. Tony and Dad need to know what I want to do about getting there but I just can't talk about it. I panic. Really panic.
The other option is to drive from here to Reading maybe do some shopping, spend the night in a hotel and get the train from there, the train would be much cheaper but it's then a three and a half hour car journey which will be horrendous. I think that would be a desperate attempt at making the whole trip 'enjoyable' but because of the experience I had at Reading hospital last year Reading isn't exactly a place that fills me with joy!
I think maybe because it's also meeting all new doctors and to talk about the hypermobility syndrome I am really nervous.
This is all hard enough without having to travel SO far. It's so overwhelming. I find it very difficult now a days that I don't feel in control of my emotions. It is as if something takes me over and I lose my sense of self, like someone has inflicted these emotions on me and they are so out of proportion. I really do miss just feeling like happy Clo. I can't describe what it is like, but when it comes on I just want someone to grab me and cuddle it out of me.
I have found a lot of comfort in the book 'Bending without Breaking' A guide to living with Hypermobility Syndrome written by Isobel Knight. It's really helped me realise how many of these things are down to the syndrome.
I'd like to share a few quotes with you...
"There is, it seems, a link between the instability associated with HMS and the range of bodily symptoms, anxiety and general psychological distress." (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
"State anxiety may be defined as 'feelings of tension and apprehension, associated with arousal of the autonomic nervous system', and trait anxiety refers to 'a general disposition that certain individuals possess to respond to a variety of (relatively unthreatening) situations with high levels of state anxiety. Sources for trait anxiety and to a lesser extent state anxiety were significantly higher for subjects with HMS, suggesting that HMS could be linked to an innate form of excessive response to fear" (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
You see, I can read these and clearly see that it would appear my feelings of panic and anxiety (which ultimately lead to feeling overwhelmed and sad or cross) but that doesn't make them feel any less real when I feel them.
Another paragraph that also sticks with me is "HMS is a disorder that robs patients of control over their lives. All chronic illness and chronic pain cause feelings of loss of control. The problem is exacerbated with HMS because there is not always a clear link between an activity and the onset of pain" (Gurley-Green, 2001, p.488)
It explains why I feel like I am drowning as soon as London on the 15th is mentioned but again, it doesn't make it any less scary. All of these hospital appointments are so bloody stressful anyway but throw in a very long journey and a huge amount of money and POOF *la la la la la la la la la la la la* *I can't deal with this!!*
Right, I really have to go! First early school run tomorrow!
I had the double hip blocks two weeks ago (big needles straight into the old hip joints) and as of yet I think it's fair to say that was a massive mistake.
I knew it would be sore but nothing could have prepared me for quite how bad it would be! At the moment the pain is still worse then it was before. I am so over this!
One of the injections went in with no trouble and although it hurt like a *beep* it was endurable. The left side though, holy gajeebers, it took a lot longer to go in and was insanely painful. The team were wonderful and the doctor was fantastic, he knew that things weren't going exactly to plan and was very kind. I was wheeled back to the recovery room on the bed instead of having to walk (at the doctors request) and had to transfer straight into my wheelchair to go home. The journey back wasn't very nice. It took about 50 minutes and I felt every bump in the road! I told Tony to just go straight, no bends, no turns but you know he insisted on keeping to the road markings! Honestly! So unreasonable!! ;-)
I think because the left side was more complicated I some how ended up with really bad backache on top of the usual hip pain and although I'm still waiting for it to subside completely it isn't as bad as it was on the car ride home.
I had to use the wheelchair right up to the house and when I tried to climb the stairs my legs went and I stumbled forward, it became pretty clear that there was no way I was going to make it up the stairs so rather then a night on the sofa Tony picked me up, threw me over his shoulder (I say threw... he was a bit more gentle then that!) and gave me a fireman's lift up the stairs in to the bedroom!
That night I got two hours sleep in one hour intervals. The pain was so intense, weirdly my feet hurt and my wrists felt like the circulation had been cut off. I think it must be where I was tensing my hands and feet so much to help me through the actual procedure. Talking about 'getting through it' I laughed the whole bloody time they were injecting me, how ridiculous is that?! I guess when you're body is going through something kind of traumatic you can go one of two ways, cry and panic or laugh hysterically... well, I laughed hysterically and wriggled my toes within a inch of their life!!
That whole week the pain got worse daily, the third day was horrendous, it also happened to be our wedding anniversary and I pretty much cried all day!! My body was just exhausted and the pain was relentless. It was without a doubt the worst pain week I have ever experienced, including the week post op last year!
One day I sat and wrote exactly what it felt like at its worst, I felt like I was going out of my pain with physical pain penetrating every joint and I wanted to capture exactly how that is. I never share how I feel when I am in that state of mind and one day I will share it on here but it's going to be a really big thing for me to do. It's a pretty big thing, to share really how bad the bad times are. I can write about them like I am now with a clear head on reflection but this was me hammering on the keypad as my body screamed at me!
So it was 6 days in bed and I was too poorly to care. Normally that would drive me MAD but honestly, I couldn't muster up the energy to be bothered!
On the Sunday after the injections a friend of mine was having a party for the children which we were invited too, I knew my daughter would go anyway but I really wanted to go. I had been looking forward to it so much that I didn't want to miss it. The thing I have learned is sometimes I have to put myself through something physically horrible to pick my spirit up and this was definitely one of those things! We had a wonderful time and I had a good laugh. I am so glad we went.
The other thing I forced myself to do was attend our daughters first parents evening. It was the day after the injections and I was meant to be on strict bed rest but there was no way I could miss it. Her teacher had offered to call but I knew in a few months time I won't really be able to remember just how bad the pain was but I will very much remember missing her first parents evening.
I had to go in the wheelchair but I am glad we went. The feed back was wonderful, Amelia-Rose is doing great, she's made lots of friends and the teacher is impressed with how much she commits to a task when she's asked to do it. I'm not surprised but it was nice to hear, she absolutely loves being at school and has been ready for a long time. As of tomorrow she will be in full time which I am very sad about but she is super excited about. It's the end of an era and I am aware that never again will we have the precious time together we have had the past 4 years. I know we're on an exciting new path but god I am going to miss her. I have loved being a stay at home mother and spending all my days with her, crafting, baking, playing, learning, going on adventures to imaginary lands.
I think it's different if you have two children, when the oldest goes to school you begin the journey of special one to one time with the youngest but if you only have one you do everything just once. When you stop breastfeeding that's it, you won't do it again, when they potty train that's it you're done with nappies and when they start school that's it! 6 hours a day to fill.
I know most parents would LOVE 6 hours to themselves but it's just really daunting to me. I can't find a little job or finish my degree. I am going to try to do some more crafts and baking and of course keep writing and work on promoting my album but none of that will come close to spending quality time with Amelia-Rose.
On a positive note though I hope it will give me more time to rest so that the time I do still get with her can be really high quality. The pain and fatigue can mean sometimes I find Amelia-Rose a little intense which makes me so sad. I use to be able to match her energy and now I can't even come close. With all the extra 'quiet' time I hope we'll be able to do more of the stuff we use to because I will be able to distribute my energy more.
So, what else has happened in the past 10 days? Oh I know! On Friday we had an Autumn Celebration craft party. Amelia-Rose had 7 friends over and we did lots of cute crafts and played 'Pinned the leaves on the tree' The children all had a wonderful time and I got to be creative with my baking! I was so pleased with the way the baked goods came out! It was such a fun party and we (ok ok me) are already planning the Christmas one!
I have a hospital appointment in London this week, we are travelling to stay with my grandparents in Swindon over night Thursday and will get on the train to London Friday morning. I am feel ok about this appointment because I've already met the Dr and although I hate being away from Amelia-Rose it should be fairly straight forward.
I also have an appointment in London the following Friday and I am most definitely not ok about that one. For one thing it is a peak train journey so if we do it it will cost us £250 in train fare alone. It's such a lot of money and you just know the train is going to be packed which isn't so nice when you're sitting in a wheelchair!
I don't know why I have such a mental block about this appointment but I literally cannot talk about it. Tony and Dad need to know what I want to do about getting there but I just can't talk about it. I panic. Really panic.
The other option is to drive from here to Reading maybe do some shopping, spend the night in a hotel and get the train from there, the train would be much cheaper but it's then a three and a half hour car journey which will be horrendous. I think that would be a desperate attempt at making the whole trip 'enjoyable' but because of the experience I had at Reading hospital last year Reading isn't exactly a place that fills me with joy!
I think maybe because it's also meeting all new doctors and to talk about the hypermobility syndrome I am really nervous.
This is all hard enough without having to travel SO far. It's so overwhelming. I find it very difficult now a days that I don't feel in control of my emotions. It is as if something takes me over and I lose my sense of self, like someone has inflicted these emotions on me and they are so out of proportion. I really do miss just feeling like happy Clo. I can't describe what it is like, but when it comes on I just want someone to grab me and cuddle it out of me.
I have found a lot of comfort in the book 'Bending without Breaking' A guide to living with Hypermobility Syndrome written by Isobel Knight. It's really helped me realise how many of these things are down to the syndrome.
I'd like to share a few quotes with you...
"There is, it seems, a link between the instability associated with HMS and the range of bodily symptoms, anxiety and general psychological distress." (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
"State anxiety may be defined as 'feelings of tension and apprehension, associated with arousal of the autonomic nervous system', and trait anxiety refers to 'a general disposition that certain individuals possess to respond to a variety of (relatively unthreatening) situations with high levels of state anxiety. Sources for trait anxiety and to a lesser extent state anxiety were significantly higher for subjects with HMS, suggesting that HMS could be linked to an innate form of excessive response to fear" (Knight, I (2011). A guide to living with Hypermobility Syndrome. Bending without breaking. London: Singing Dragon. 141)
You see, I can read these and clearly see that it would appear my feelings of panic and anxiety (which ultimately lead to feeling overwhelmed and sad or cross) but that doesn't make them feel any less real when I feel them.
Another paragraph that also sticks with me is "HMS is a disorder that robs patients of control over their lives. All chronic illness and chronic pain cause feelings of loss of control. The problem is exacerbated with HMS because there is not always a clear link between an activity and the onset of pain" (Gurley-Green, 2001, p.488)
It explains why I feel like I am drowning as soon as London on the 15th is mentioned but again, it doesn't make it any less scary. All of these hospital appointments are so bloody stressful anyway but throw in a very long journey and a huge amount of money and POOF *la la la la la la la la la la la la* *I can't deal with this!!*
Right, I really have to go! First early school run tomorrow!
Wednesday 23 October 2013
What is love?
Tomorrow is my five year wedding anniversary so it seemed fitting today to blog about someone very close to me heart.
My darling husband.
Tony and I 'officially' got married on the 24th October 2008 in front of our two witnesses, my parents, my sister, family friends from Canada and my best friend from school. It was a tiny affair but it was wonderful. After the ceremony we went to our favourite pub/restaurant and then went on to spend the night in Chiseldon house hotel. The reason it was such a small do was because the next day on the 25th we had a church blessing and for me as a Christian that was the important part. It was during the blessing that we exchanged rings and vows and had about 80 guests. We had the service at 5pm and had candles lit everywhere we could safely put them! It was a truly beautiful occasion.
After the service we had tea and cupcakes in the church with all our guests and once all the photographs were taken we went back to my parents house with 25 friends and family and had a fabulous celebration catered by a local restaurant.
Our wedding 'flowers' were gathered from the country village that I grew up in and arranged by a good family friend. They were breath taking! She had used these amazing Autumn colours, almost everything wild from the hedges and just brought a few flowers from the market to put some actual flowers in the display. My bridesmaids had bouquets made out of felt flowers which were fabulously quirky! The photography was done by another family friend and my Dad being a C of E vicar did the service.
Tony and I have never been a 'flashly' couple (not that kind of flashing!) and our wedding reflected us wonderfully. It was small, intimate and full of love and laughter. I was 7 months pregnant at the time and wore a deep purple maternity dress and I love knowing that even though she was still inside Amelia-Rose was technically at our wedding!
We pledged to each other that day 'In sickness and in health' 'For better and for worse' we would stay together and there isn't a doubt in my mind that we have kept those vows.
In the quest for honesty (as is the purpose of this blog) I will not lie and tell you it has all been plain sailing. In fact, there was a time that our marriage was pushed to the very limit. It was after we had relocated to Dorset but Tony was commuting to Wiltshire to work (2 and a half hours away) and working 24 hour shifts. He was away more then he was around and rather then go through the pain of missing each other when he was gone we fell into a pattern of bickering and the light heartedness that had always been key in our relationship slipped away. I felt like I had lost the man I married to depression.
There was a time that I wondered if we would make it. But thank God, we fought. We talked, we cried together and most importantly we healed together. That's the thing you see with unconditional love. If you love someone unconditionally that goes beyond the boundaries of behaviour and hurt.
Unconditional love is not 'I love you if you behave in a way I like' it is 'I love you despite everything else, no matter what.' What this time in our relationship taught me is that you can love someone enough to lay your life down but you don't always have to like them very much!
When Tony started to work in Dorset and we were seeing each other every day again we both let ourselves heal. We let our marriage heal. Unconditional love.
We grew as a couple and as parents and the whole time we were growing together. He became a bigger part of me and I became a bigger part of him.
Now 5 years on and not a day goes by that I don't look at Tony and thank God for bringing him into my life. Tony is selfless and kind in a way that goes above and beyond the call of duty. He is tender and loving. He never belittles how I feel and I have never EVER heard him complain about my illness. Obviously it goes without saying that he wishes I was well but he never complains about the impact my reduced capability has brought to our lives. In fact, several times a week he will tell me how well he thinks I am coping and says he doesn't know anyone else who would be able to face chronic illness with such strength and remain positive. He's like my own personal champion
When I got sick without ever needing to be asked Tony took over all the house work, in fact, he actually tells me off if I do it! I enjoy housework so do as much as I can but there are things like hovering and carrying loads of washing that I simply cannot do and like a domestic knight in shining armour he swept in and took over.
He kisses me on the forehead and tells me he loves me, he holds me so tight when I cry, when he envelopes me in his arms my troubles melt into him and he carries them with no sign of it being a burden.
I don't have to voice how I feel or how bad the pain is around him, he always just knows. If I do need to talk about it though he listens.
In the lonely long nights that I am awake in agony (and I mean agony) he is there, stroking my hair, holding my hand. Telling me I look beautiful even if I don't feel it.
I need to take pain killers first thing in the morning and to enable me to do this before I have to get out of bed I get breakfast in bed everyday and if he is on an early he makes me a cup of tea in my travel mug and puts a bowl, milk and cereal on a tray so it is at the side of the bed when I wake up.
The thoughtfulness of my lovely hubby is endless.
No one can make me laugh like Tony does, he is silly and so inappropriate sometimes but it is always done in good humour. He's never grown out of the naughty school boy humour!
He is the most dedicated father to our daughter also. I am still really struggling with the pain from the hip blocks so this morning to keep Amelia-Rose busy and give me some quiet he spent an hour in her bedroom with her on the floor playing Barbies!
As if doing everything he does at home wasn't enough 'giving' Tony is a carer for adults with learning difficulties. His ability to do the job he does to the standard he does it is outstanding. For whatever reason, care work is a female dominated profession but hands down, Tony is as good if not better then some of the best female carers I've ever met. He takes the needs of his clients as paramount and gives a huge part of himself to his work. He really is a carer, he cares. For him, it's about so much more then just turning up to work, doing your shift and coming home. He invests a part of himself into every shift and I couldn't be prouder of him for the work that he does.
I can't imagine what life would be without my love. My soul mate. My 'other half'. We have laid the strongest foundations in the past 5 years and I look forward now to building our future together.
So, what is love? Well if you ask me. It's Tony.
My darling husband.
Tony and I 'officially' got married on the 24th October 2008 in front of our two witnesses, my parents, my sister, family friends from Canada and my best friend from school. It was a tiny affair but it was wonderful. After the ceremony we went to our favourite pub/restaurant and then went on to spend the night in Chiseldon house hotel. The reason it was such a small do was because the next day on the 25th we had a church blessing and for me as a Christian that was the important part. It was during the blessing that we exchanged rings and vows and had about 80 guests. We had the service at 5pm and had candles lit everywhere we could safely put them! It was a truly beautiful occasion.
After the service we had tea and cupcakes in the church with all our guests and once all the photographs were taken we went back to my parents house with 25 friends and family and had a fabulous celebration catered by a local restaurant.
Our wedding 'flowers' were gathered from the country village that I grew up in and arranged by a good family friend. They were breath taking! She had used these amazing Autumn colours, almost everything wild from the hedges and just brought a few flowers from the market to put some actual flowers in the display. My bridesmaids had bouquets made out of felt flowers which were fabulously quirky! The photography was done by another family friend and my Dad being a C of E vicar did the service.
Tony and I have never been a 'flashly' couple (not that kind of flashing!) and our wedding reflected us wonderfully. It was small, intimate and full of love and laughter. I was 7 months pregnant at the time and wore a deep purple maternity dress and I love knowing that even though she was still inside Amelia-Rose was technically at our wedding!
We pledged to each other that day 'In sickness and in health' 'For better and for worse' we would stay together and there isn't a doubt in my mind that we have kept those vows.
In the quest for honesty (as is the purpose of this blog) I will not lie and tell you it has all been plain sailing. In fact, there was a time that our marriage was pushed to the very limit. It was after we had relocated to Dorset but Tony was commuting to Wiltshire to work (2 and a half hours away) and working 24 hour shifts. He was away more then he was around and rather then go through the pain of missing each other when he was gone we fell into a pattern of bickering and the light heartedness that had always been key in our relationship slipped away. I felt like I had lost the man I married to depression.
There was a time that I wondered if we would make it. But thank God, we fought. We talked, we cried together and most importantly we healed together. That's the thing you see with unconditional love. If you love someone unconditionally that goes beyond the boundaries of behaviour and hurt.
Unconditional love is not 'I love you if you behave in a way I like' it is 'I love you despite everything else, no matter what.' What this time in our relationship taught me is that you can love someone enough to lay your life down but you don't always have to like them very much!
When Tony started to work in Dorset and we were seeing each other every day again we both let ourselves heal. We let our marriage heal. Unconditional love.
We grew as a couple and as parents and the whole time we were growing together. He became a bigger part of me and I became a bigger part of him.
Now 5 years on and not a day goes by that I don't look at Tony and thank God for bringing him into my life. Tony is selfless and kind in a way that goes above and beyond the call of duty. He is tender and loving. He never belittles how I feel and I have never EVER heard him complain about my illness. Obviously it goes without saying that he wishes I was well but he never complains about the impact my reduced capability has brought to our lives. In fact, several times a week he will tell me how well he thinks I am coping and says he doesn't know anyone else who would be able to face chronic illness with such strength and remain positive. He's like my own personal champion
When I got sick without ever needing to be asked Tony took over all the house work, in fact, he actually tells me off if I do it! I enjoy housework so do as much as I can but there are things like hovering and carrying loads of washing that I simply cannot do and like a domestic knight in shining armour he swept in and took over.
He kisses me on the forehead and tells me he loves me, he holds me so tight when I cry, when he envelopes me in his arms my troubles melt into him and he carries them with no sign of it being a burden.
I don't have to voice how I feel or how bad the pain is around him, he always just knows. If I do need to talk about it though he listens.
In the lonely long nights that I am awake in agony (and I mean agony) he is there, stroking my hair, holding my hand. Telling me I look beautiful even if I don't feel it.
I need to take pain killers first thing in the morning and to enable me to do this before I have to get out of bed I get breakfast in bed everyday and if he is on an early he makes me a cup of tea in my travel mug and puts a bowl, milk and cereal on a tray so it is at the side of the bed when I wake up.
The thoughtfulness of my lovely hubby is endless.
No one can make me laugh like Tony does, he is silly and so inappropriate sometimes but it is always done in good humour. He's never grown out of the naughty school boy humour!
He is the most dedicated father to our daughter also. I am still really struggling with the pain from the hip blocks so this morning to keep Amelia-Rose busy and give me some quiet he spent an hour in her bedroom with her on the floor playing Barbies!
As if doing everything he does at home wasn't enough 'giving' Tony is a carer for adults with learning difficulties. His ability to do the job he does to the standard he does it is outstanding. For whatever reason, care work is a female dominated profession but hands down, Tony is as good if not better then some of the best female carers I've ever met. He takes the needs of his clients as paramount and gives a huge part of himself to his work. He really is a carer, he cares. For him, it's about so much more then just turning up to work, doing your shift and coming home. He invests a part of himself into every shift and I couldn't be prouder of him for the work that he does.
I can't imagine what life would be without my love. My soul mate. My 'other half'. We have laid the strongest foundations in the past 5 years and I look forward now to building our future together.
So, what is love? Well if you ask me. It's Tony.
Tuesday 22 October 2013
Getting through
Yesterday I went and had hip blocks put in to both of my hips. It is a procedure where the doctor puts an injection into your joint and injects a local anaesthetic and steroid. It's not a nice procedure to have done although yesterdays was less intrusive then when I had the dye put in for my MRI last year because that went into the groin and this Dr went in from my outer thigh, really where you think of when you think of your hip. You're normally given a sedative or a general but for me to get the blocks done before I have to go back to London the only appointment they could give me was yesterday and there was no one around who could sedate me.
The first one went in fairly straightforward. It hurt but was endurable. My body seems to react to the intensity of the pain by making me laugh, not just a little chuckle, full on hysterical laughter. I've come to believe that when our body is going through something exceptional we react in one of three ways. You can go into shock. Cry and get very upset and panic or you reach this weird laugh hysteria. I went into crazy loon laugh mode.
The injection in the left side was nowhere near as easy. The needle wouldn't pass into the joint and it took longer. The team were wonderful, the doctor was great but it really hurt. The pain went up into my back and down my leg and when I thought surely he must be done the Dr apologised for not having it in place yet! I was sure he must have almost been finished but he hadn't been able to get the needle in the right place yet!
The nurse told me a few times how brave I was which sounded strange to me although I appreciated that she acknowledged (and the Dr too) that what was happening was really not an easy thing to go through and I coping well! The thing is, I didn't feel brave! As I laughed and ooo'ed and aaa aah aah my way through the procedure I didn't exactly feel like a super hero!
However, on the way home I realised what I did feel was proud of myself. I didn't cry or get overwhelmed. I went in and I endured it and managed to banter with the wonderful medical team. It's yet another nasty big hospital appointment that I've got through alone. These are the appointments that Tony can take me to but can't come in with me. I have to do it alone.
The Dr wanted me to be wheeled through into recovery on my 'trolley' and was happy to know I had a wheelchair. Having both done at once (well in one appointment) made me feel very unstable and wobbly and when we got home I fell up the stairs a bit, nothing dramatic, more of a stumble but I don't think there was anyway I was making it up the stairs alone. Enter my prince charming who put me over his shoulder and gave me a fire mans lift up the stairs. The hysterical pain induced laughing came back but I didn't have to climb the stairs!
Over night was really hard, the pain wasn't only in my hips but down my legs, into my back, randomly my feet hurt, my tummy felt like I had pulled a muscle and my wrists hurt?? What is that about?! I guess it's the hypermobility syndrome, the feet and wrists possibly from where I was clenching so much during the injections? My pelvis and feet felt SO heavy. I managed two hours sleep in two one hour blocks and haven't managed to catch up on any today which is a bit of a bummer. I am so rubbish at sleeping during the day though.
I'm back at the pain clinic Thursday but the next two big appointment to come are both in London one of the 8th November and the other on the 15th.
To try to keep my mind off the pain last night I went on a bit of an online shopping spree! Whoops! Anyway I feel far more organised for Christmas (I know, I know, it's October but I'm making loads of presents this year!) and I also brought all the decorations for Amelia-Rose's birthday (which is, erm... January!) oh and did a food shop.
Hopefully these blocks will bring a bit of calm, I am SO ready for manageable pain.
The first one went in fairly straightforward. It hurt but was endurable. My body seems to react to the intensity of the pain by making me laugh, not just a little chuckle, full on hysterical laughter. I've come to believe that when our body is going through something exceptional we react in one of three ways. You can go into shock. Cry and get very upset and panic or you reach this weird laugh hysteria. I went into crazy loon laugh mode.
The injection in the left side was nowhere near as easy. The needle wouldn't pass into the joint and it took longer. The team were wonderful, the doctor was great but it really hurt. The pain went up into my back and down my leg and when I thought surely he must be done the Dr apologised for not having it in place yet! I was sure he must have almost been finished but he hadn't been able to get the needle in the right place yet!
The nurse told me a few times how brave I was which sounded strange to me although I appreciated that she acknowledged (and the Dr too) that what was happening was really not an easy thing to go through and I coping well! The thing is, I didn't feel brave! As I laughed and ooo'ed and aaa aah aah my way through the procedure I didn't exactly feel like a super hero!
However, on the way home I realised what I did feel was proud of myself. I didn't cry or get overwhelmed. I went in and I endured it and managed to banter with the wonderful medical team. It's yet another nasty big hospital appointment that I've got through alone. These are the appointments that Tony can take me to but can't come in with me. I have to do it alone.
The Dr wanted me to be wheeled through into recovery on my 'trolley' and was happy to know I had a wheelchair. Having both done at once (well in one appointment) made me feel very unstable and wobbly and when we got home I fell up the stairs a bit, nothing dramatic, more of a stumble but I don't think there was anyway I was making it up the stairs alone. Enter my prince charming who put me over his shoulder and gave me a fire mans lift up the stairs. The hysterical pain induced laughing came back but I didn't have to climb the stairs!
Over night was really hard, the pain wasn't only in my hips but down my legs, into my back, randomly my feet hurt, my tummy felt like I had pulled a muscle and my wrists hurt?? What is that about?! I guess it's the hypermobility syndrome, the feet and wrists possibly from where I was clenching so much during the injections? My pelvis and feet felt SO heavy. I managed two hours sleep in two one hour blocks and haven't managed to catch up on any today which is a bit of a bummer. I am so rubbish at sleeping during the day though.
I'm back at the pain clinic Thursday but the next two big appointment to come are both in London one of the 8th November and the other on the 15th.
To try to keep my mind off the pain last night I went on a bit of an online shopping spree! Whoops! Anyway I feel far more organised for Christmas (I know, I know, it's October but I'm making loads of presents this year!) and I also brought all the decorations for Amelia-Rose's birthday (which is, erm... January!) oh and did a food shop.
Hopefully these blocks will bring a bit of calm, I am SO ready for manageable pain.
Saturday 19 October 2013
"The sun is shining the tank is clean"
Today has been a really super day. For no reason really but my spirit has just been 'on one' all day. Poor Amelia-Rose has been so poorly this week and any mother can tell you caring for a poorly child is often both exhausting and heart breaking and whilst yesterday I felt like I had been hit by a train I've felt really good today.
I've managed to do that thing again where I can separate the day I have from the pain I've experienced. Win!
Amelia-Rose was a little ball of energy this morning which was lovely to see, we hung out together playing Barbies (her choice!) and I emptied out a cardboard box of its bubble wrap and we spent a good 45 minutes stomping on it. It was such good fun! Granted her stomping was a little more enthusiastic then mine but it was so wonderful just to be goofy for a while.
My mum has started coming round once a week to do some housework for me (as I can't hoover etc) which is much appreciated and afterwards today we went out for lunch at the Red Brick Café. Man, I don't know what it is about that place but it is magical. It oozes creative energy, everyone there is just having a great time and enjoying the great food and atmosphere. It's a really special place. I was thinking when Amelia-Rose starts school full time I would love to take my notebook and pen and go alone to do some writing.
It left me feeling inspired and I buzzed for the rest of the afternoon. I have times when I am going around our town that I feel like I could just burst sunshine! I never thought where I live could make me so happy but it really does. It's the most amazing place.
I've managed to do that thing again where I can separate the day I have from the pain I've experienced. Win!
Amelia-Rose was a little ball of energy this morning which was lovely to see, we hung out together playing Barbies (her choice!) and I emptied out a cardboard box of its bubble wrap and we spent a good 45 minutes stomping on it. It was such good fun! Granted her stomping was a little more enthusiastic then mine but it was so wonderful just to be goofy for a while.
My mum has started coming round once a week to do some housework for me (as I can't hoover etc) which is much appreciated and afterwards today we went out for lunch at the Red Brick Café. Man, I don't know what it is about that place but it is magical. It oozes creative energy, everyone there is just having a great time and enjoying the great food and atmosphere. It's a really special place. I was thinking when Amelia-Rose starts school full time I would love to take my notebook and pen and go alone to do some writing.
It left me feeling inspired and I buzzed for the rest of the afternoon. I have times when I am going around our town that I feel like I could just burst sunshine! I never thought where I live could make me so happy but it really does. It's the most amazing place.
Wednesday 16 October 2013
6 days absent
It's been almost a week since I wrote and I really have missed it. I've just not really been in the 'right place' to write so I decided to leave it.
The 12th October was the year anniversary of my operation in Reading and having to think about that time and the consequences of that surgery have been difficult.
My experience at Reading hospital left me traumatised which resulted in my body actually going into shock (not a pleasant experience) and the operation itself has left my hip so unstable I 'pop', 'click' or 'semi dislocate' for the proper term up sometimes up to 11 times a day, even on a good day it will go 8 or 9 times.
I've actually just started seeing a psychologist to help me process what happened in Reading and what has happened since. The lady I see at the pain clinic thought it would help, I think she identified that the experience is something I really really don't like talking about and probably for that reason needs to be talked about! We are also all hoping it will help me heal the gap between mind and body. That seems like such a ridiculous thing to write but I really don't relate to my body at all. Until it started hurting me everyday I never really thought about my body but now, I just, I don't trust it! It hurts, it dislocates, it doesn't do what I want/need it to do. It's not a body image thing like 'urrgh I'm so fat, I've got a big nose' it's a 'you Mrs body screw me over all the time and I don't like you anymore so there!' thing.
I also haven't been writing on here because I've been working on some other writing projects and I have energy for one or the other! I am loving doing them though,
I got some good news today! I am going to get the hip blocks I need! Finally! On Monday!! I have to travel over an hour which is a down side but I was getting really concerned that I was going to have to go back to my consultant in London and tell him that nobody in Dorset could/would do the hip blocks he ordered. He wanted to know the impact it would have on life and with only three weeks between the injections and my next appointment with him it isn't really going to give us an accurate idea but at least it will be done.
The rather daunting downside though is that the Dr that will do it can't sedate me or give me a general anaesthetic (which is the norm) because there isn't an Anaesthesiologist available.
Unfortunately I am going to have to cut this short because Amelia-Rose isn't very well and needs her Mumma!
The 12th October was the year anniversary of my operation in Reading and having to think about that time and the consequences of that surgery have been difficult.
My experience at Reading hospital left me traumatised which resulted in my body actually going into shock (not a pleasant experience) and the operation itself has left my hip so unstable I 'pop', 'click' or 'semi dislocate' for the proper term up sometimes up to 11 times a day, even on a good day it will go 8 or 9 times.
I've actually just started seeing a psychologist to help me process what happened in Reading and what has happened since. The lady I see at the pain clinic thought it would help, I think she identified that the experience is something I really really don't like talking about and probably for that reason needs to be talked about! We are also all hoping it will help me heal the gap between mind and body. That seems like such a ridiculous thing to write but I really don't relate to my body at all. Until it started hurting me everyday I never really thought about my body but now, I just, I don't trust it! It hurts, it dislocates, it doesn't do what I want/need it to do. It's not a body image thing like 'urrgh I'm so fat, I've got a big nose' it's a 'you Mrs body screw me over all the time and I don't like you anymore so there!' thing.
I also haven't been writing on here because I've been working on some other writing projects and I have energy for one or the other! I am loving doing them though,
I got some good news today! I am going to get the hip blocks I need! Finally! On Monday!! I have to travel over an hour which is a down side but I was getting really concerned that I was going to have to go back to my consultant in London and tell him that nobody in Dorset could/would do the hip blocks he ordered. He wanted to know the impact it would have on life and with only three weeks between the injections and my next appointment with him it isn't really going to give us an accurate idea but at least it will be done.
The rather daunting downside though is that the Dr that will do it can't sedate me or give me a general anaesthetic (which is the norm) because there isn't an Anaesthesiologist available.
Unfortunately I am going to have to cut this short because Amelia-Rose isn't very well and needs her Mumma!
Thursday 10 October 2013
Autumn days
Today has been cold but mostly wonderful. My thumb is really sore at the minute and I'm finding it difficult to do every day things that should just be easy. Chopping veg for stew earlier was horrible! I make a lot of stews for Tony and Amelia-Rose because I can do it in the morning before I'm too tired and I know it will just bubble away in the slow cooker and they'll have a lovely dinner. There's something very therapeutic about a good stew I think!
I use my left thumb to hold in the lever on my mobility scooter which is unavoidable but boy am I paying for it at the minute!
Tony is on a late shift tonight so started at 3pm and will be home about 10.15pm. It meant I picked Amelia-Rose up from school and we got to spend the evening just the two of us which was nice. Obviously it goes without saying it's lovely when Tony is around but Amelia-Rose and I got to spend some real quality time together today and it was absolutely wonderful.
Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.
On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!
I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.
Autumn is my favourite time of year, those wonderful blue sky days with a nip in the air and crunchy leaves under foot. I think there is something magical about Autumn.
On the way home from school Amelia-Rose and I collected lots of 'Autumn things' and used them to make an Autumn picture using sticky back plastic when we got home. Every pile of leaves we found we crunched in. Amelia-Rose with her feet and me on my mobility scooter! Lord knows what people must have thought seeing a fully grown woman going round and round in circles through leaf piles but it made Amelia-Rose and I happy and that's all that matters!
I took her a kinder egg for a treat after school and she got a little blue horse in it, when she first got home I had to go in the house whilst she hid it in the garden, she then drew me a treasure map and I had to go out into the garden and find her. I should point out Amelia-Rose is already better at giving directions then I have ever been! I was most impressed! After that we made the picture and Amelia and pretending the picture was pony land and I was the first human to ever be allowed into pony land. I quietly put the camera on the table and got some very sweet 'pony view' pictures and also made a little film. You can't see either Amelia-Rose or I in it, just hear us talking but I feel like I captured a really special time.
We had a nice meal together. I had a carrot, apple and ginger smoothie because I'm still struggling with my jaw and didn't fancy a crunchy salad but I am really enjoying and sticking to the raw food. It's amazing what it is doing for my energy levels.
I hope days like today are the days Amelia-Rose remembers when she is older. It really reminded me of how things use to be before I became disabled and I hope she holds onto these memories. Being as creative as I am I have always loved the creativity being a mum brings back into your life. We would always have some craft project or another on the go and be off on long nature walks looking for fairies or dragons.
When Amelia-Rose was born she reopened my eyes to the beauty and magic of the world and I loved living life at her pace. Everything was new and exciting and demanded being explored. If we were walking past a row of houses we would make up detailed stories of who might live inside and pretend we knew all about them. I am ashamed to say when pain became such a big part of my life I lost some of that. It was so hard to just function anything beyond that suddenly became out of my reach.
I feel like at the minute we are getting that back and that excites me so much. There is something very cruel about not being able to be the mum you know you can be.
I love the way that Autumn eases us into Winter. It is a slow transition that gently prepares us all for the darker days ahead. It has made me think about how my life is transitioning from thinking I was going to get better to accepting that this is something I have to manage my whole life.
Wednesday 9 October 2013
'The James'
Today my body has gone "Aggghhh pain pain pain, hurt, hurt, hurty hurt hurt, rrrrrrrrrrrraaaaaaaaaaaaa"
Today my mind has gone "Sod you body, I feel good!"
It's the second day in a row that my pain hasn't dragged me down and yeah, I'll say it, I'm proud of that. I am proud of myself. We're not ever really meant to talk about being proud of ourselves are we? It's 'blowing your own trumpet' or being 'big headed' but why shouldn't we talk about the times that we've done something and thought 'Yeah, good for me!'
So today I met James, 'the James'. For months I've heard everything James has to say about the album and my vocal performances but I've never actually met him. Just as I began to think that maybe James was actually the name for Steve's imaginary friend that lives in the studio there he was in the flesh! Who knew it?! He's real!
You see, James is helping Steve with all the editing and production side of the album. I go in with Steve and we'll write a song, record it and spend some time putting it all together and then James goes in with Steve and listens to it with a new pair of ears and they make it the best it can be. Up until now we've just never been in the same place at the same time. It was great to finally meet.
The three of us got on like a house on fire and I honestly had one of the best afternoons that I've had for a long time. We did what I would call a typical 'Steve and Chloe' and had some really massively deep and personal conversations but there was no sense of 'Oh this is a bit weird, talking about all this with someone I met half an hour ago!' Perhaps now it won't be a 'Steve and Chloe' it will be a 'Steve, James and Chloe'.
A few songs on the album are written as a direct result of the drastic change my life has been through, the reasons behind them are really personal but I didn't feel at all uncomfortable being so honest with James in the room. It was clear he really got where they were coming from and that was nice.
It was good to talk about everything too, I say everything, I mean, the music, the process, the reason for the songs, how we all feel about it as a whole album rather then just individual songs. I think it must be impossible to talk about 'everything' that ever was EVER but you know what I mean.
It's funny how the three of us from very different backgrounds all ended up sat in a recording studio together on the 9th October 2013. I find it fascinating that there we all were, each of us putting a bit of ourselves into this album and seeing how our lives will forever be sort of entwined in this record.
We managed to get the vocals done (take that jaw infection!) for the final track which is insanely exciting. I almost can't comprehend that that's it, it's almost done! Although in many ways it is just the beginning, the journey of actually creating this album is almost through!
Today my mind has gone "Sod you body, I feel good!"
It's the second day in a row that my pain hasn't dragged me down and yeah, I'll say it, I'm proud of that. I am proud of myself. We're not ever really meant to talk about being proud of ourselves are we? It's 'blowing your own trumpet' or being 'big headed' but why shouldn't we talk about the times that we've done something and thought 'Yeah, good for me!'
So today I met James, 'the James'. For months I've heard everything James has to say about the album and my vocal performances but I've never actually met him. Just as I began to think that maybe James was actually the name for Steve's imaginary friend that lives in the studio there he was in the flesh! Who knew it?! He's real!
You see, James is helping Steve with all the editing and production side of the album. I go in with Steve and we'll write a song, record it and spend some time putting it all together and then James goes in with Steve and listens to it with a new pair of ears and they make it the best it can be. Up until now we've just never been in the same place at the same time. It was great to finally meet.
The three of us got on like a house on fire and I honestly had one of the best afternoons that I've had for a long time. We did what I would call a typical 'Steve and Chloe' and had some really massively deep and personal conversations but there was no sense of 'Oh this is a bit weird, talking about all this with someone I met half an hour ago!' Perhaps now it won't be a 'Steve and Chloe' it will be a 'Steve, James and Chloe'.
A few songs on the album are written as a direct result of the drastic change my life has been through, the reasons behind them are really personal but I didn't feel at all uncomfortable being so honest with James in the room. It was clear he really got where they were coming from and that was nice.
It was good to talk about everything too, I say everything, I mean, the music, the process, the reason for the songs, how we all feel about it as a whole album rather then just individual songs. I think it must be impossible to talk about 'everything' that ever was EVER but you know what I mean.
It's funny how the three of us from very different backgrounds all ended up sat in a recording studio together on the 9th October 2013. I find it fascinating that there we all were, each of us putting a bit of ourselves into this album and seeing how our lives will forever be sort of entwined in this record.
We managed to get the vocals done (take that jaw infection!) for the final track which is insanely exciting. I almost can't comprehend that that's it, it's almost done! Although in many ways it is just the beginning, the journey of actually creating this album is almost through!
Tuesday 8 October 2013
What a blooming day!
Ok, so I'm not really sure what to write about tonight. We'll see where this takes us shall we?
The day started off a bit manic, I rung the dentist at 8.30am (in my undies if I'm honest!) and the only time they could see me was at 9am! Cue calm but fast (Amelia-Rose does not respond to rush!) frenzy to get dressed, do my hair and get Amelia-Rose dressed and be out the door and on the other side of town in 30 minutes. We were victorious though and I got there on time! Hoora!
I have been put on antibiotics for 5 days but then I am on my own! Eeeeek! You see the dentist can see from the outside that clearly there is some kind of infection in my jaw/tooth but it isn't coming up on the x-ray and until she knows exactly where it is there is nothing she can do. So, I have 5 days to 'treat the symptoms' but we actually need it to develop so we can treat the cause! I have to go back in three weeks.
When I got back I made some biscuits and started a new food blog www.theverybendybaker.blogspot.co.uk I thought it would be fun to have somewhere to post all my recipes and it keeps them off this page then.
I got to plant most of my tulip and daff bulbs today with mum which was nice. I am excited to see them all come through in spring. I've gone a bit crazy with the tulip bulbs but it will be worth it. Our garden is going to be blooming wonderful!
Blooming. I wonder if I am going through a blooming stage in my life at the moment? I feel most probably I am at that point where the bulb has sprouted and the stem grown but the beautiful blooming flower is still safely tucked away inside the petals.
I don't know though, maybe in 5 years time I will look back on this time and think 'Yup, you were blooming then'. I know now when I reflect on the years gone by I was blooming at times when I didn't necessarily think I was.
I wonder sometimes how differently life would have turned out if I had made different decisions and taken different paths but I am so grateful that I took the ones I did. Would it have been nice to travel around Canada or go and work in America? Sure it would have but if this period of illness was an unchangeable aspect of my life would a travelling buddy have cared for me in the way Tony has? No. Would photo's of sunsets make me smile inside and out in the way Amelia-Rose does? Definitely not.
I believe every word I have spoken, every turn I have made, every decision I have mulled over, every leap of faith I have thrown myself into to, every step I have taken has led me exactly where I am right now and this is where I am meant to be to give me the strength I need to succeed in spite of my health.
When I was ten my mum and I went to stay with our friends in Halifax, Nova Scotia in Canada. One day we went to a farmers market and there was a chap there busking. He was absolutely fantastic and my mum and I decided to buy his album together. To this day it is one of my favourite albums and tragically you can't get it anymore although Raghu Lokanathan is still going strong (www.raghumusic.com)One There is a line in one of the songs that has followed me around for the past 15 years and regularly pops into my head when I meet new people.
"If you ask me where I'm from I'll say everywhere I've ever been"
The day started off a bit manic, I rung the dentist at 8.30am (in my undies if I'm honest!) and the only time they could see me was at 9am! Cue calm but fast (Amelia-Rose does not respond to rush!) frenzy to get dressed, do my hair and get Amelia-Rose dressed and be out the door and on the other side of town in 30 minutes. We were victorious though and I got there on time! Hoora!
I have been put on antibiotics for 5 days but then I am on my own! Eeeeek! You see the dentist can see from the outside that clearly there is some kind of infection in my jaw/tooth but it isn't coming up on the x-ray and until she knows exactly where it is there is nothing she can do. So, I have 5 days to 'treat the symptoms' but we actually need it to develop so we can treat the cause! I have to go back in three weeks.
When I got back I made some biscuits and started a new food blog www.theverybendybaker.blogspot.co.uk I thought it would be fun to have somewhere to post all my recipes and it keeps them off this page then.
I got to plant most of my tulip and daff bulbs today with mum which was nice. I am excited to see them all come through in spring. I've gone a bit crazy with the tulip bulbs but it will be worth it. Our garden is going to be blooming wonderful!
Blooming. I wonder if I am going through a blooming stage in my life at the moment? I feel most probably I am at that point where the bulb has sprouted and the stem grown but the beautiful blooming flower is still safely tucked away inside the petals.
I don't know though, maybe in 5 years time I will look back on this time and think 'Yup, you were blooming then'. I know now when I reflect on the years gone by I was blooming at times when I didn't necessarily think I was.
I wonder sometimes how differently life would have turned out if I had made different decisions and taken different paths but I am so grateful that I took the ones I did. Would it have been nice to travel around Canada or go and work in America? Sure it would have but if this period of illness was an unchangeable aspect of my life would a travelling buddy have cared for me in the way Tony has? No. Would photo's of sunsets make me smile inside and out in the way Amelia-Rose does? Definitely not.
I believe every word I have spoken, every turn I have made, every decision I have mulled over, every leap of faith I have thrown myself into to, every step I have taken has led me exactly where I am right now and this is where I am meant to be to give me the strength I need to succeed in spite of my health.
When I was ten my mum and I went to stay with our friends in Halifax, Nova Scotia in Canada. One day we went to a farmers market and there was a chap there busking. He was absolutely fantastic and my mum and I decided to buy his album together. To this day it is one of my favourite albums and tragically you can't get it anymore although Raghu Lokanathan is still going strong (www.raghumusic.com)One There is a line in one of the songs that has followed me around for the past 15 years and regularly pops into my head when I meet new people.
"If you ask me where I'm from I'll say everywhere I've ever been"
Monday 7 October 2013
Mind over matter
I've been really proud of the 'head space' I have been in over the weekend. Every now and again I have to stop, regroup and really force myself to pause and reconnect. I think starting the raw food lifestyle again (I don't like to call it a 'diet' as people automatically associate that with weight loss) has given me a real boost. I am aware I've lost a lot confidence in my body recently because it feels so 'out of my hands' but taking the time to prepare myself fully raw dishes and knowing that I am nurturing my body in such an efficient way has possibly started to bridge the gap between body and mind.
What makes me think that is that this weekend has been a horrendous pain weekend. Horrendous. Saturday morning was ok and I was grateful for that because we took Amelia-Rose to the theatre to see 'A tap dancing Mermaid' which was absolutely wonderful. I've been taking Amelia-Rose to see live productions since she was under 2 and she adores going to see shows. This particular one was a one woman show by Tessa Bide and it was truly magical. http://www.tessabide.com/ Tessa is an amazing performer, we've seen a few of the shows she's been in as we got to know her when she worked at The Lyric but this is the first one she has actually devised herself also.
Anyway, I got through the morning but was feeling worse by the hour as the afternoon set in. Around dinner time I could tell I was going to be in for a rough night. On top of all the regular pain I had 'that' awful stomach ache (see first post!) and my jaw was really bothering me. Throughout the day I had developed a very sore lump on my jaw which was increasing to swell.
The night was every bit as bad as I had expected and I got no sleep. No, that's a lie. I did sleep. I last looked at the clock and it was 4.05am. I woke myself up crying (in pain! boohoo!) at 4.30am. Yes. You read it right. I got 25 minutes sleep! That was it then until 10.30am when I dozed off for two hours and was then awake until 9.30pm! Two and a half hours sleep in 36 hours!
I should have been going out of my mind with all that lot but I wasn't. I really did manage to just accept it. I knew the next 48 hours or so were going to be tough but then everything would calm down and I could carry on.
I was sad that I was sick on the weekend when I cherish them so much now Amelia-Rose is in school part time but it was unavoidable and stressing myself out was only going to make it worse. I knew I did the right thing Sunday texting my mum very early explaining the situation and asking her to take Amelia-Rose for the day. It was harvest festival at church followed by the harvest lunch and my grandparents were down for the weekend. I didn't want her to miss any of that so I accepted that this year I couldn't do these things but she could and it was ok for her to go for the day. I wasn't being a terrible mother by letting her go and admitting to myself it would have just been too much to have a lively four year old ball of energy to entertain all day. I was just being a poorly mum.
Last night before bed I did a 40 minute guided meditation and slept well.
I took this morning slowly and have started on my mission to declutter my drawers but set myself the goal of one drawer.
My jaw is still very sore so I made myself an amazing orange and basil juice with pulp for tea and I didn't insist on a big nutty salad or something that would require a lot of prep.
All of these things make me think that maybe my mind is beginning to process how to live with this in a way that doesn't make me feel like I am missing out, letting everyone down or resenting my body for causing me so much pain.
I have managed to keep my spirit level through a pain 'peak' and I really am incredibly proud of that.
Be blessed x
What makes me think that is that this weekend has been a horrendous pain weekend. Horrendous. Saturday morning was ok and I was grateful for that because we took Amelia-Rose to the theatre to see 'A tap dancing Mermaid' which was absolutely wonderful. I've been taking Amelia-Rose to see live productions since she was under 2 and she adores going to see shows. This particular one was a one woman show by Tessa Bide and it was truly magical. http://www.tessabide.com/ Tessa is an amazing performer, we've seen a few of the shows she's been in as we got to know her when she worked at The Lyric but this is the first one she has actually devised herself also.
Anyway, I got through the morning but was feeling worse by the hour as the afternoon set in. Around dinner time I could tell I was going to be in for a rough night. On top of all the regular pain I had 'that' awful stomach ache (see first post!) and my jaw was really bothering me. Throughout the day I had developed a very sore lump on my jaw which was increasing to swell.
The night was every bit as bad as I had expected and I got no sleep. No, that's a lie. I did sleep. I last looked at the clock and it was 4.05am. I woke myself up crying (in pain! boohoo!) at 4.30am. Yes. You read it right. I got 25 minutes sleep! That was it then until 10.30am when I dozed off for two hours and was then awake until 9.30pm! Two and a half hours sleep in 36 hours!
I should have been going out of my mind with all that lot but I wasn't. I really did manage to just accept it. I knew the next 48 hours or so were going to be tough but then everything would calm down and I could carry on.
I was sad that I was sick on the weekend when I cherish them so much now Amelia-Rose is in school part time but it was unavoidable and stressing myself out was only going to make it worse. I knew I did the right thing Sunday texting my mum very early explaining the situation and asking her to take Amelia-Rose for the day. It was harvest festival at church followed by the harvest lunch and my grandparents were down for the weekend. I didn't want her to miss any of that so I accepted that this year I couldn't do these things but she could and it was ok for her to go for the day. I wasn't being a terrible mother by letting her go and admitting to myself it would have just been too much to have a lively four year old ball of energy to entertain all day. I was just being a poorly mum.
Last night before bed I did a 40 minute guided meditation and slept well.
I took this morning slowly and have started on my mission to declutter my drawers but set myself the goal of one drawer.
My jaw is still very sore so I made myself an amazing orange and basil juice with pulp for tea and I didn't insist on a big nutty salad or something that would require a lot of prep.
All of these things make me think that maybe my mind is beginning to process how to live with this in a way that doesn't make me feel like I am missing out, letting everyone down or resenting my body for causing me so much pain.
I have managed to keep my spirit level through a pain 'peak' and I really am incredibly proud of that.
Be blessed x
Saturday 5 October 2013
How can I keep from singing?
Well today something very exciting happened! I was able to set up the official facebook page for a little something that given me so much strength over the past 10 months. I have an album coming out! Or rather, we have an album coming out! Go check it out, no, read this then go check it out! www.facebook.com/unexpectedsongbird
I want to take you on the journey that through the last four years had brought me to this moment.
A few months after we relocated to Dorset in 2009 I plucked up the courage to sing a beautiful song written by the incredibly talented Steve Richie (who use to be a member of my favourite folk band Tanglefoot before they disbanded) in church. The song holds a very special place in my heart because it was the song that finished playing just moments before Amelia-Rose was born. In my opinion it is one of the most beautiful songs ever written and I would urge you all to find a way to listen to it. I am sure it is available in other places also but I know it is on spotify. The song is called 'For the day'.
No one in the parish knew I could sing and it was the first time for 7 years I had sung in public. Singing has always been a passion of mine but I use to suffer with the most awful stage fright and whilst I didn't 'choke' on stage in the days leading up to a concert I would feel sick!
Our church music group had a fabulous sax player called Dan (who has since gone on to be a really valued person in my life. Amelia-Rose calls him 'Granddad Dan') and he asked me if I had ever sung Jazz, I told him I hadn't but I had always wanted to give it and a go and before I knew it I was in his front room looking through song books and refusing to sing into the microphone because there were builders outside working on his house!
Through hours of patience and practise Dan got me singing into the mic and before long we had our first gig!
At first Dan and I would use backing tracks but we were given the phone number of a piano player and went along to meet him with the hope that we might be able to preform together. Dan and I had been asked along to participate in the open mic session at our local Jazz café and we had no desire to turn up there with our backing tracks!
Around the same time we also met a guitar player called Adrian so we no longer needed the backing tracks! Whilst Steve, Dan, Adrian and I never preformed together Dan and I would switch between Steve and Adrian depending upon who was available when we had a gig.
Dan and I eventually went our own ways when he put together a new band and I was keen to try new things. We are still firm friends to this day and I fully accredit me finding my way back to singing to him! Not many people would have put up with my silly nerves in those early days!
Steve was looking at putting together a new much smaller group and was interested in trying different material. Right before my hips started to get bad Michael, a fantastic trumpet player joined Steve and I and we began rehearsing and looking for our audience.
When my hips got bad I wasn't well enough to commit to gigs let alone preform and that could have been the end of the story but really it is just the beginning.
Steve and I got together in January 2013 with the intention of talking about trying to write some new material. I took a very deep breath and showed him some lyrics I had written using a direct quote from something Tony had said to me one night when he was consoling me. An hour later we had a song! We were both blown away by the ease in which our creative energy seemed to mix and we were excited enough to commit to trying another song.
Steve emailed me a piece of music he had put together and asked if I had any ideas for lyrics that might work. He gave me one phrase and left the rest to me. I won't lie, it felt like an enormous responsibility. I have Steve on a bit of a pedestal and the idea that he was trusting me with a piece of his music was mind blowing!
Steve has been a professional musician his entire adult life and worked with some very successful bands. He knows the business and has played to packed out arenas. It isn't just his success though that makes me admire him so much. He is, in my opinion, genuinely one of the wisest people you will ever meet and he has this amazing ability to draw out your own inner wisdom without you even trying.
The following week we were back in the studio and it was time to take another deep breath and sing what I had written. You can imagine my internal terror when a verse and chorus in he stopped me... "That's it" he said " Lets record it!" *PHEW*
The rest as they say is history. Steve and I have spent many many hours together writing and recording and talking late into the night and not writing or recording at all!
It is a very unexpected creative relationship and friendship (not least because of the 38 year age gap) but a very real one. Steve and I seem to draw out each other's creative process and compliment each others personalities. I couldn't tell you what 'it' is but we have 'it'. There is never any frustration or clash of ideas, sometimes I think we're sharing the same thoughts!
So now, 10 months on and we have one song left to record and a big album launch at our local Arts Centre on the 7th February 2014.
So how did we decide on the name 'Songbird'? Well, to be honest with you I don't think we did decide. I think it was given to us. A gift that God, fate, the universe whatever you chose to believe in gave us.
Rewind back 3 years and out of nowhere Dan started to call me songbird in our email exchanges. I thought it was very sweet and it kind of stuck but it really was only between Dan and I.
Rewind 22 months and Steve, Michael and I were trying to think of a group name for the three of us to preform under. "How about songbird?" Suggested Michael and that was it. I don't think we could ever have been called anything else.
Writing the album has given me a place to channel and work through a lot of my emotions about going from perfectly healthy to chronically ill. Steve's studio has become a little haven for me where I go and I know even if I don't sing a note I will leave feeling lighter and affirmed.
And singing? What does singing do for me? Singing makes my soul soar like an eagle over a canyon. When I am singing I do not belong to this broken body, I am content, I am weightless, I'm boundless, I am free.
I have always been a huge fan of Enya's music and I think perhaps her version of this old hymn sums it all up for me.
"How Can I Keep From Singing?"
When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?
In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?
I want to take you on the journey that through the last four years had brought me to this moment.
A few months after we relocated to Dorset in 2009 I plucked up the courage to sing a beautiful song written by the incredibly talented Steve Richie (who use to be a member of my favourite folk band Tanglefoot before they disbanded) in church. The song holds a very special place in my heart because it was the song that finished playing just moments before Amelia-Rose was born. In my opinion it is one of the most beautiful songs ever written and I would urge you all to find a way to listen to it. I am sure it is available in other places also but I know it is on spotify. The song is called 'For the day'.
No one in the parish knew I could sing and it was the first time for 7 years I had sung in public. Singing has always been a passion of mine but I use to suffer with the most awful stage fright and whilst I didn't 'choke' on stage in the days leading up to a concert I would feel sick!
Our church music group had a fabulous sax player called Dan (who has since gone on to be a really valued person in my life. Amelia-Rose calls him 'Granddad Dan') and he asked me if I had ever sung Jazz, I told him I hadn't but I had always wanted to give it and a go and before I knew it I was in his front room looking through song books and refusing to sing into the microphone because there were builders outside working on his house!
Through hours of patience and practise Dan got me singing into the mic and before long we had our first gig!
At first Dan and I would use backing tracks but we were given the phone number of a piano player and went along to meet him with the hope that we might be able to preform together. Dan and I had been asked along to participate in the open mic session at our local Jazz café and we had no desire to turn up there with our backing tracks!
Around the same time we also met a guitar player called Adrian so we no longer needed the backing tracks! Whilst Steve, Dan, Adrian and I never preformed together Dan and I would switch between Steve and Adrian depending upon who was available when we had a gig.
Dan and I eventually went our own ways when he put together a new band and I was keen to try new things. We are still firm friends to this day and I fully accredit me finding my way back to singing to him! Not many people would have put up with my silly nerves in those early days!
Steve was looking at putting together a new much smaller group and was interested in trying different material. Right before my hips started to get bad Michael, a fantastic trumpet player joined Steve and I and we began rehearsing and looking for our audience.
When my hips got bad I wasn't well enough to commit to gigs let alone preform and that could have been the end of the story but really it is just the beginning.
Steve and I got together in January 2013 with the intention of talking about trying to write some new material. I took a very deep breath and showed him some lyrics I had written using a direct quote from something Tony had said to me one night when he was consoling me. An hour later we had a song! We were both blown away by the ease in which our creative energy seemed to mix and we were excited enough to commit to trying another song.
Steve emailed me a piece of music he had put together and asked if I had any ideas for lyrics that might work. He gave me one phrase and left the rest to me. I won't lie, it felt like an enormous responsibility. I have Steve on a bit of a pedestal and the idea that he was trusting me with a piece of his music was mind blowing!
Steve has been a professional musician his entire adult life and worked with some very successful bands. He knows the business and has played to packed out arenas. It isn't just his success though that makes me admire him so much. He is, in my opinion, genuinely one of the wisest people you will ever meet and he has this amazing ability to draw out your own inner wisdom without you even trying.
The following week we were back in the studio and it was time to take another deep breath and sing what I had written. You can imagine my internal terror when a verse and chorus in he stopped me... "That's it" he said " Lets record it!" *PHEW*
The rest as they say is history. Steve and I have spent many many hours together writing and recording and talking late into the night and not writing or recording at all!
It is a very unexpected creative relationship and friendship (not least because of the 38 year age gap) but a very real one. Steve and I seem to draw out each other's creative process and compliment each others personalities. I couldn't tell you what 'it' is but we have 'it'. There is never any frustration or clash of ideas, sometimes I think we're sharing the same thoughts!
So now, 10 months on and we have one song left to record and a big album launch at our local Arts Centre on the 7th February 2014.
So how did we decide on the name 'Songbird'? Well, to be honest with you I don't think we did decide. I think it was given to us. A gift that God, fate, the universe whatever you chose to believe in gave us.
Rewind back 3 years and out of nowhere Dan started to call me songbird in our email exchanges. I thought it was very sweet and it kind of stuck but it really was only between Dan and I.
Rewind 22 months and Steve, Michael and I were trying to think of a group name for the three of us to preform under. "How about songbird?" Suggested Michael and that was it. I don't think we could ever have been called anything else.
Writing the album has given me a place to channel and work through a lot of my emotions about going from perfectly healthy to chronically ill. Steve's studio has become a little haven for me where I go and I know even if I don't sing a note I will leave feeling lighter and affirmed.
And singing? What does singing do for me? Singing makes my soul soar like an eagle over a canyon. When I am singing I do not belong to this broken body, I am content, I am weightless, I'm boundless, I am free.
I have always been a huge fan of Enya's music and I think perhaps her version of this old hymn sums it all up for me.
"How Can I Keep From Singing?"
My life goes on in endless song
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.
Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?
While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.
No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?
Above earth's lamentations,
I hear the real, though far-off hymn
That hails a new creation.
Through all the tumult and the strife
I hear it's music ringing,
It sounds an echo in my soul.
How can I keep from singing?
While though the tempest loudly roars,
I hear the truth, it liveth.
And though the darkness 'round me close,
Songs in the night it giveth.
No storm can shake my inmost calm,
While to that rock I'm clinging.
Since love is lord of heaven and earth
How can I keep from singing?
When tyrants tremble in their fear
And hear their death knell ringing,
When friends rejoice both far and near
How can I keep from singing?
In prison cell and dungeon vile
Our thoughts to them are winging,
When friends by shame are undefiled
How can I keep from singing?
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