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'
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