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
Saturday 30 November 2013
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!
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