It has been quite some time since I last blogged about living a bendy life. Alot of things have happened in the few months that have gone by. Some very positive, some not so positive.
I am in the process of moving to a new home and the usual stress involved with such a huge expereince is having quite an effect. So I thought I would use this as an excuse to come and let you all know whats been going on in the past few months and what the future might have in store for me.
First of all some non-bendy news
I have been on the council housing list for some time slowly climbing my way up to getting my own little wheelchair friendly bungalow. It has taken 7 months to get to the point where I can say that I may have somewhere before Christmas. However this week it's all gone a bit pear shaped.
The housing people have decided that you can either be a full-time wheelchair user or you only use your chair outside so have no need for an accessible home. I use my wheelchair indoors alot now as my mobilty and condition continue to deteriate. However I can still stand and I can still walk around my flat, on some days very well, so am not classed as a full-time chair user. As a result they have decided that I am no longer a priorty for a wheelchiar friendly home. I have been dropped right down to the bottom of the housing list and told it would be at least a year before I am at the top again.
Thankfully God has been working his wonderful ways as usual and an extremely kind property manager has offered to put me at the top of his waiting list for a private rent bungalow in a village just outside of Hartlepool.
I love the village and spend alot of time there at my boyfriend's home so it is perfect. However because life is never that simple it has caused a few issues...
The village comes under Durham County Council so I have to give all the equipment I have from social services back (which includes a bath lift, special perching stools for getting a wash/working in the kitchen, and my 'falls alarm'). I then need to refer myself to Durham social services to be assessed by them who will then decide if I can have similar equipment from them. This could take anything from a couple of months to a year to happen so it means going back to basics in terms of managing day-to-day and also looking for some 2nd hand equipment I can get hold of myself.
Obviously that is a big pain but nothing serious. However there is a chance I may have to give my amazing wheelchair back also and be reassessed by Durham Wheelchair Service. I have been extremely lucky to get the chair and without it I am very limited in where I can go and what I can do. I can't imagine my life without my wheelchair and it's not till now that I realise just how much it has changed my life. I feel quite humbled to realise just how grateful I have been to have it and how lucky I am compared to alot of people with EDS who are still fighting to get wheelchairs.
Like any big moving of home I'm dealing with all the issues of bills to be paid, bonds to be found and the financial and other aspects that are involved. The stress of moving home is said to be at the top of the list and like anyone else I am starting to feel it.
For me, and for other people with EDS, stress works a bit differently.
I'v had a couple of tears like anyone would when it feels like you can't quite climb that huge mountain in front of you (until you have a cuppa and some chocolate and you are ready to take on the world!). However its more than a short temper and a few tears that I am experienceing.
Most people with EDS have cfs/me (chronic fatigue syndrome) and/or fibromyalgia. see the end of this article for links to some great info on what these are
People with CFS/ME and/or fibromylagia experience different effects from stress where stress causes physical symptoms. Usually this is a flare-up of their usual cfs/me and/or fibromyalgia.
For me its the fatigue that is being triggered and as a result I am in that place where it seems I see more of my bed than I do my friends.
Thankfully it's been over 6months since I've had this level of cfs/me flare and again I am reminded of how lucky I have been the past 6 months.
I am in a much better place to manage the exhuastion as I now have a wonderful partner who seems to know better than I do what I need and how to help.
Right now I know that the next few months are going to be tough but I'm ready to take them on and have the right support and mindset to be able to look forward to the challenge.
Now for the bendy stuff...
It's been quite a year not only for my Ehlers Danlos but also for the hypermobility community as a whole.
It has finally been agreed by the amazing drs who specialise in Ehlers Danlos and Hypermobilty syndrome that they are in fact the same condition. Before now it was often the case that someone diagnosed with Ehlers Danlos Syndrome would manage a little better at getting the right treatment and support and have their condition taking seriously by medical professionals. However someone with a diagnosis of Hypermobility Syndrome would often be told that its not a serious condition, 'you are just bendy' and would have to fight, often unsuccesfully, to get even the basic pain treatment.
Now that Hypermobilty Syndrome is recognised as the same condition (but just a difference in label) as Ehlers Danlos Syndrome, it means that hopefully the condition will continue to get recognised and treated effectively.
As a result of this huge milestone I can now officially say I have Ehlers Danlos Syndrome. It might seem that its just a label and means nothing but already I am seeing a difference in how I am being treated by my drs and physiotherapists.
Treatment has moved in a new direction in the past few months for me. Physio is now focussing on pain relief as it seems that building up the muscle around my joints isn't working. My hips have now started to 'turn themselves off' and are rolling inwards alot. This is affecting my walking and standing alot. I am currently having hydrotherapy with my physio. Its doesnt seem to be having any major impact on my muscles or joints in terms of strength or condition but being in the warm pool is helping with the pain.
I have also been trying new pain medication with the focus on neuropathic pain. This is pain caused by recurrent injury damaging the nerves making them constantly fire off pain signals. It's very annoying being in pain when you know that its simply the nerves getting mixed up and there's actually no injury.
Pain medication for this tends to be the same as that for epilepsy. It works by dampening the nervous system. Due to my sensitivity to certain medications and interactions with other treatments it's proving quite difficult to find something that works. I am simply going to keep my fingers crossed that the right combination of medication is there waiting to be discovered.
I recently attended the Hypermobility Syndrome Association residential. This was a chance to meet up with other bendy people and to listen to talks by the wonderful drs who dedicate so much of their time and career on helping us.
One dr, Dr Aziz, specialises in the gastrointestinal problems that occur in people with EDS. It was quite an eye-opener to discover just how serious this part of the condition can be. My GI issues have been quite bad this last year resulting in my bowel giving up and not functioning. As a result I now have to use an irrigation treatment to keep my insides functioning.
It was a bit of a relief to hear that this can be the eventual treatment for some people with EDS so I am not alone. I had chance to speak to Dr Aziz after his talk and he suggested that in the future I may need to adapt this treatment by having a tube through my tummy as the upper bowel stops functioning. He also said that it sounds like there is alot going on inside me that needs looking at properly so I will be getting reffered to his specialist clniic in London. Again all fingers are crossed that its not as bad as it first appears.
The amazing Prof. Bird has retired from Leeds Hospital where he led an amazing team of drs, physios and other staff in managing the care and treatment of alot of people with EDS in the UK. I was lucky enough to be under his care for the past year and it is becuase of his knowledge, expertise and understading that I have moved forward so much with treatment.
I am now awaiting my first appointment with a new rheumatologist in Newcastle who will take over where Prof. Bird left.
As the wnd of the year slowly creeps up on us I am already enjoying wrapping up in layers of thermals and working out when to get my flu jab. I know that winter can be a tough time of year for me and my EDS becuase of the extra issues of temperature control, lower immuninty to colds and viruses and the cfs/me flares that come with burning more energy trying to keep warm. I know from last winter what to expect and already am preparing. I have dug out my thickest socks and hinting for lots of 'warm' birthday gifts.
It has been the usual rollercoaster that you ride with EDS this past few months and while some of the dips might have seemed impossible to get over at the time, my strentgh to cope and my optimism for my future continues to grow.
I know that life with EDS will always be intresting. It will be fun at times and heartbreaking at others but whatever the next 6months brings...
I amd ready!!!
cx
Links:
Simple guide to CFS/ME http://chronicfatigue.about.com/od/whatischronicfatigue/a/understandCFS.htm
Simple guide to Fibromyalgia http://chronicfatigue.about.com/od/whatisfibromyalgia/a/understandfibro.htm
Thursday, 7 October 2010
Monday, 14 June 2010
Coronation Street gets Bendy!
Disabled Actress Cherylee Houston is Coronation Streets first ever full time disabled actress. Cherylee has EDS/HMS and fibromyalgia (like alot of people with eds/hms). And it seems the condition is finally going to be getting more recognised in the mainstream as Cherylee's character 'Izzy' also has the condition!.
The condition is going to be written into the show so I imagine that before long people will be hearing 'my joints dislocate easily' coming from their tv.
This is great news for members of the eds/hms community for many reasons.
First it will hopefully help raise some recognition of how serious and disabling the condition can be for some people. It will also help people with the condition get across to their family and friends how the condition can deteriate and to what level.
My biggest hope is that it helps raise awareness of the condition amongst drs who will finally be able to see that eds/hms doesn't just mean you are extra bendy but that it can result in serious disability.
Some people from some of the eds/hms online communities are worried that becuase Cherylee is a full time wheelchair user that people will think that if you have eds/hms you have to be in a wheelchair and that people will think that if you don't use a wheelchair you can't have the condition. They are worried that it might get the wrong message across and fail to show that the condition affects people very differntly. However I think it's about time that the condition was shown in its more serious form. It gets very tiring seeing the condition played down massively in medical literature, internet information sites and by drs. For me it will make a massive difference to be able to say to people 'I have the same thing as Izzy on Coronation Street' knowing that I then don't have to try explain why I'm not up and about walking around and living a normal life.
There hasn't been much talk on the condition on the show yet other than a brief explanation by Izzy when asked how she came to be in a wheelchair by kirk,
'Its a degenerative thing, its genetic'.
Some people from the bendy community aren't happy with this very basic explanation but in my opinion this is very accurate on how alot of us deal with questions on eds/hms from new people.
When people first ask about my condition and why I am in a wheelchair I usually say something very similar,
'I have a genetic condition that's got worse very quickly'.
Its only if that person sticks around that I will begin to explain the condition more but even then its usually
'my joints dislocate easily and I get very tired very quickly'.
The more detailed explanation only comes if a friendship develops. People might wonder why I, and many others with eds/hms, aren't as vocal about our condition as our blogs portray. For me it's because it's very difficult to explain the condition in enough detail to get the seriousness of it across quick enough so that the other person doesn't switch off.
Also my biggest worry is that I come across as bitter or a moaner about my condition so I tend to play it down alot in real life. It's very easy for people to assume you have more of an issue about your disability if you talk about it more. For me, this blog, facebook and the hmsa forum are the only place where I talk about eds/hms in any detail. New people in my life at the moment are only learning about the condition slowely as they ask more questions over time.
The only worry I have about the storyline of Izzy's eds/hms and fibromyalgia is that she hasn't yet appeared to have any issues with pain or exhaustion. eds/hms in itself leaves you in almost constant pain and with at least moderate fatigue. Fibromyalgia ontop of that would cause even more pain and more serious issues with exhaustion. However so far the character has yet to complain of pain or tiredness and is working full time in the show's 'Knicker Factory'.
I hope that the show's writers use Cherylee's own expereince of the condition to give an accurate portrayal of these main symptoms of the condition, although it wouldn't make much of a show if she slept through most of it!
However it does seem that itv are keen to not downplay the condition given the accurate description of 'Izzy's' eds/hms on the corrie website:
http://www.itv.com/soaps/coronationstreet/characters/f-lcharacters/izzyarmstrong/
I hope that Cherylee's character and storyline on Coronation street will raise much needed awareness about the condition.
Cherylee has also appeared in Emmerdale, Little Britain, The Bill, Casualty and other tv shows.
For more information on Cherylee's acting career and her character on the show see
http://www.itv.com/lifestyle/thismorning/showbiz/cheryleehouston/
The condition is going to be written into the show so I imagine that before long people will be hearing 'my joints dislocate easily' coming from their tv.
This is great news for members of the eds/hms community for many reasons.
First it will hopefully help raise some recognition of how serious and disabling the condition can be for some people. It will also help people with the condition get across to their family and friends how the condition can deteriate and to what level.
My biggest hope is that it helps raise awareness of the condition amongst drs who will finally be able to see that eds/hms doesn't just mean you are extra bendy but that it can result in serious disability.
Some people from some of the eds/hms online communities are worried that becuase Cherylee is a full time wheelchair user that people will think that if you have eds/hms you have to be in a wheelchair and that people will think that if you don't use a wheelchair you can't have the condition. They are worried that it might get the wrong message across and fail to show that the condition affects people very differntly. However I think it's about time that the condition was shown in its more serious form. It gets very tiring seeing the condition played down massively in medical literature, internet information sites and by drs. For me it will make a massive difference to be able to say to people 'I have the same thing as Izzy on Coronation Street' knowing that I then don't have to try explain why I'm not up and about walking around and living a normal life.
There hasn't been much talk on the condition on the show yet other than a brief explanation by Izzy when asked how she came to be in a wheelchair by kirk,
'Its a degenerative thing, its genetic'.
Some people from the bendy community aren't happy with this very basic explanation but in my opinion this is very accurate on how alot of us deal with questions on eds/hms from new people.
When people first ask about my condition and why I am in a wheelchair I usually say something very similar,
'I have a genetic condition that's got worse very quickly'.
Its only if that person sticks around that I will begin to explain the condition more but even then its usually
'my joints dislocate easily and I get very tired very quickly'.
The more detailed explanation only comes if a friendship develops. People might wonder why I, and many others with eds/hms, aren't as vocal about our condition as our blogs portray. For me it's because it's very difficult to explain the condition in enough detail to get the seriousness of it across quick enough so that the other person doesn't switch off.
Also my biggest worry is that I come across as bitter or a moaner about my condition so I tend to play it down alot in real life. It's very easy for people to assume you have more of an issue about your disability if you talk about it more. For me, this blog, facebook and the hmsa forum are the only place where I talk about eds/hms in any detail. New people in my life at the moment are only learning about the condition slowely as they ask more questions over time.
The only worry I have about the storyline of Izzy's eds/hms and fibromyalgia is that she hasn't yet appeared to have any issues with pain or exhaustion. eds/hms in itself leaves you in almost constant pain and with at least moderate fatigue. Fibromyalgia ontop of that would cause even more pain and more serious issues with exhaustion. However so far the character has yet to complain of pain or tiredness and is working full time in the show's 'Knicker Factory'.
I hope that the show's writers use Cherylee's own expereince of the condition to give an accurate portrayal of these main symptoms of the condition, although it wouldn't make much of a show if she slept through most of it!
However it does seem that itv are keen to not downplay the condition given the accurate description of 'Izzy's' eds/hms on the corrie website:
http://www.itv.com/soaps/coronationstreet/characters/f-lcharacters/izzyarmstrong/
I hope that Cherylee's character and storyline on Coronation street will raise much needed awareness about the condition.
Cherylee has also appeared in Emmerdale, Little Britain, The Bill, Casualty and other tv shows.
For more information on Cherylee's acting career and her character on the show see
http://www.itv.com/lifestyle/thismorning/showbiz/cheryleehouston/
Sunday, 13 June 2010
Just a quickie!
Thought I would post a quick one whilst I wait for tiredness to set in so I can go to bed.
The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice.
I had planned on watching the all important England game on saturday but after sleeping for most of the day before I was still exhausted by 3pm and decided to have a quick nap. I work up 21 hours hours later, the next day having missed the game altogther.
However I think I've finally caught up and fully recharged. Today took a while to get going (thank God for the comedy channel on sky tv!).
But once I got moving I managed to get a little housework done, had a shower and got to church.
I'm now suffering the after-effects of so much sleep-insomnia! grrr.
But Iv managed to get alot of bloggging done while I wait for my body clock to catch up.
I have to apologise for my previous post. Those who know me well will know I very rarely moan about my condition and certainly not to the extent of explaining in such details the not so good parts of EDS. However rather than delete the post like I usually do when I write something I later regret, I'm going to leave it just in case it helps someone else. A few of my bendy friends have told me they are passing my blog onto their friends and family to help them understand how hms/eds affects them so hopefully that post will help explain the nasty bits.
So from now on I am hopefully back to my normal positive self. No more winging or complaining and focussing on the bad bits.
I expect by the end of the week I will have done something wonderful or experienced something humerous or embarrasing with my hms/eds that I can tell you all about.
Till then, happy bending!
cx
The past week as been a tough one energy wise. I've spent most the week in bed and have slept through an entire day twice.
I had planned on watching the all important England game on saturday but after sleeping for most of the day before I was still exhausted by 3pm and decided to have a quick nap. I work up 21 hours hours later, the next day having missed the game altogther.
However I think I've finally caught up and fully recharged. Today took a while to get going (thank God for the comedy channel on sky tv!).
But once I got moving I managed to get a little housework done, had a shower and got to church.
I'm now suffering the after-effects of so much sleep-insomnia! grrr.
But Iv managed to get alot of bloggging done while I wait for my body clock to catch up.
I have to apologise for my previous post. Those who know me well will know I very rarely moan about my condition and certainly not to the extent of explaining in such details the not so good parts of EDS. However rather than delete the post like I usually do when I write something I later regret, I'm going to leave it just in case it helps someone else. A few of my bendy friends have told me they are passing my blog onto their friends and family to help them understand how hms/eds affects them so hopefully that post will help explain the nasty bits.
So from now on I am hopefully back to my normal positive self. No more winging or complaining and focussing on the bad bits.
I expect by the end of the week I will have done something wonderful or experienced something humerous or embarrasing with my hms/eds that I can tell you all about.
Till then, happy bending!
cx
Thursday, 10 June 2010
The Reality of HMS/EDS
The last few weeks I've had more than the usual 'what is your condition exactly?'.
I don't mind being asked about hms/eds, especially if the person asking is enquiring through care and compassion rather than just being nosey.
Because of the complex nature of hms/eds its impossible to get the full extent of the condition across in one or two sentences. So my usual reply is something like "My joints dislocate really easily so I'm in pain alot and get really worn out easily."
I rarely moan or complain about my situation, even on bad days. My non-bendy friends rarely see me on bad days, if at all, and my usual reply to 'how are you feeling today?' is an automatic 'I'm good thanks how are you?'.
Only my fellow bendy friends (those with hms/eds) have a real understanding of the reality of living with the condition.
I'm not keen on people really knowing the full extent of how hms/eds affects me because I hate being seen as weak, a complainer or ungrateful for the good days.
But I think its come to the point where I have too many people enquiring regularly about how I am. I can no longer keep hiding away for half the week, putting on my 'I'm fine' face. So here is that reality for my non-bendy friends and friends of other hms/eds sufferers.
I'm dealing with day 3 of a really bad flare at the moment. A 'flare' for me is when the usual everyday pain and fatigue 'flare' up really bad to the point where I'm either stuck in bed or unable to do anything other than sleep. 'Coma days' are days where I simply sleep right through them, usually 48hr solid sleeps. 'Coma days' can occur without me having a 'flare' in pain and usually happen at least once a week.
A 'flare' on the other hand usually means although I'm stuck in bed and exhausted, my sleep is very broken and difficult due to the pain.
HMS/EDS Pain
Its quite difficult to get the level of the pain hms/eds causes across to non-bendy people.
Pain affects me (and other people with hms/eds) differently throughout the day. There is always some kind of pain going on at any given time.
For me I am always in some level of pain. There is never a time when I am not in pain of some kind. However, when you live with chronic pain, you learn to block out the average day pain. If someone slapped you across the face it would really hurt and you would definitely feel it. If someone slapped you across the face repeatedly without a break you would eventually stop being so affected and shocked by it. It would still hurt but you would get so used to feeling it that you would learn to ignore it.
There are 4 main types of pain that come with hms/eds.
The first is a constant ache that covers my entire body. The best way to describe it is to say it is very similar to that ache you have when you come down with a really bad cold or flu. You ache everywhere with the joints being most painful.
This pain is constant and never goes away. This is the pain that I've learnt to ignore. I still feel it, but I've become so used to it that it doesn't effect how I function.
The second type of pain is when the usual chronic ache becomes more intense than usual. It turns from being like a regular bad cold/flu ache to being similar to the more intense ache you get when you have full blown flu. Most people experience real flu at least once. If you haven't yet experienced it you are lucky as most people will tell you that it is really awful. With real full blown flu the pain is still around your whole body, however it is much worse than the previous example. You are unable to move, even the movement of your ribs during breathing becomes excruciating. This is what the pain is like during a 'flare' for me.
The pain is so bad that I cannot ignore it. I usually am unable to get out of bed during this type of pain. The only thing I can do is to take painkillers and try to sleep through it. However, anyone who has had bad flu will tell you, its very difficult to sleep whilst in this type of pain because it is very difficult to relax enough to fall asleep. If I am able to fall asleep it is usually only for a few minutes at a time. These days are spent trying to distract myself with whatever I am able to do. Usually I am able to have the TV on quietly or listen to some music whilst drifting in and out of sleep. If the pain is starting to diminish, either temporarily or permanently for that flare, I am able to use my laptop to get online or play some simple games. This post for my blog is being written whilst the pain is getting less intense.
The third type of pain that comes with hms/eds is the acute pain that is caused by injury to the joints. If you dislocate a joint it is obviously very painful. With hms/eds not only do you have dislocations, but you also have subluxations. This is a partial dislocation where the end of the bone will move in the joint in a way its not designed to do. For example the elbow might turn more than its supposed to but will not dislocate. Instead it gets stuck partially dislocated. This is a subluxation in it's basic form, still very painful and still needing to be 'popped' back into its normal position. People who know me will be used to me clicking and clunking my elbow and my knuckles to replace a subluxated joint.
When a joint dislocates or subluxates the ligaments and muscles around the joint become damaged in some way. They tend to be overstretched or may even tear. Once a joint is popped back into place the damaged muscles and ligaments will spasm and become very painful usually for a few hours, sometimes even a few days. As well as the muscles and ligaments being very painful, the joint itself will become inflamed as a result of the injury. This is the body's natural response and happens in order to stop the joint from becoming further injured. An inflamed joint is quite sore. Because hms/eds causes the joints to dislocate/subluxate regularly, most people with hms/eds will be dealing with this third type of pain pretty much constantly in one joint or another. For me I have to deal with dislocations around 2-3 times a week and subluxations around 5-10 times a day.
The fourth and final type of pain that comes wit hms/eds is the pain that is caused by permanent damage to the joints. Because the joints are moving much more than they are supposed to, they can wear down which damages the surface of the joint socket and the end of the bone. This leads to osteo-arthritis very early on in people with hms/eds.
I have developed osteo-arthritis in my lower spine, in particular the Sacroiliac joints. These joints are where the bottom of the spine joins the pelvic bone. Normally the joints hardly move at all, but in hms/eds they can be as flexible as any other joint. Arthritis is a painful condition that on its own can in some cases cause serious disability and deforming of the affected joint. In hms/eds the arthritis is a secondary condition which means it's there because of the hms/eds.
Inflammation can also be a permanent condition for some joints, in particular the spine. This inflammation becomes permanent either because the joint is so unstable or becuase the body has got confused and thinks the joint is still injured when it isn't. For me, this constant inflammation occurs in my lower spine and hands.
There are other types of pain that can occur with hms/eds such as pain in the organs that are affected by the condition. For me this happens in the stomach and bowel.
During a bad 'flare' I am usually dealing with the first two types of pain, the 'aches' as well as the pain caused by arthritis and inflammation in my lower spine. The arthritic pain and that caused by inflammation in my hands and spine are triggered during bad flares, especially the spine, which makes it very difficult to move, even to change position in bed. Strong painkillers such as Tramadol, codeine, combined with paracetamol and ibuprofen can help bring the pain levels down to a more bearable level, however they can only be taken every 6 hours and usually only last for 3 at the most. They don't take away the pain but only bring it down a little, but not enough to have me up on my feet. I also take the same painkillers if I have a sudden pain or an build-up of pain in a joint/joints caused from a dislocation/subluxation or inflammation. However due to a rare reaction to medication a few years ago which caused serious effects, I only take my pain medication when the pain becomes more than I can cope with. For those who know me, they are able to tell when the pain is very bad when they see me reaching for my meds.
I use a TENS machine on my spine when the pain is particular bad. This is a small machine that is attached to electrodes on my spine. A small electric charge is passed through the electrodes to the spinal chord blocking the pain signals.
HMS/EDS fatigue/exhaustion
Pain has more than the obvious effect on the body. Being in constant pain requires alot of energy to ignore in order to get on with everyday life. It also drains energy when the pain is particularly bad. As a result, people with chronic pain tend to get worn out very easily. Hms/eds causes energy levels to be seriously reduced anyway due to the muscles using up most of your energy in order to keep the joints stable during movement. So the energy that is ambushed by pain is often the last reserves. This is whey a bad pain flare will wipe me out and cause me to sleep more than normal. If i am not sleeping during a pain flare, I am still too exhausted to do anything other than to dose in bed.
As well as pain causing fatigue and exhaustion, a hms/eds flare will cause the usual fatigue to be worse.
The fatigue and exhaustion caused by hms/eds (not related to pain), is very similar to Chronic fatigue syndrome (CFS/ME). As mentioned earlier, the muscles in hms/eds body have to do all they can to support the unstable joints. This means that they require alot of energy to be constantly working, even when the joint is resting. The amount of energy needed for the muscles can be anything up to two thirds of the energy supply used for other things. 'Stealing' all this energy means there is very little left for the rest of the body to do anything else. Getting out of bed, washed and dressed for someone with hms/eds can be exhausting and can leave them too tired to be able to do anything else for the rest of the day other than rest.
Just like pain, fatigue various in its intensity. For me a good-average day energy-wise is similar to that of a regular person who has had very little or no sleep for a few days whilst still working full time in a physical job. On a good day I can get ready and manage a few hours out in my wheelchair doing some shopping. Or on very good day I am able to sweep the floor in my flat, dust the furniture and take a shower. After that I am usually in alot of pain and so exhausted that I either have to go back to bed or spend the day laid on the settee.
A bad day leaves me with very little energy. Usually just getting out of bed and having breakfast is the limit. Visitors will be asked to forgive me being unwashed and in my pyjamas on these days.
During a 'flare' I may have no energy or very little. These days are spent in bed using my wheelchair to get to the bathroom. I may sleep through most of the day if my pain is not too bad. If pain is also an issue the day is spent in bed dosing on and off listening to music or reading a book if I am able.
People with hms/eds can also suffer from insomnia caused by the pain making it difficult to sleep. A typical night for me consists of two-three hours sleep from which I wake up in pain and spend the rest of the night trying to find things to do to occupy me until daytime. This lack of sufficient sleep makes the fatigue/exhaustion more problematic.
Hms/eds is a condition that affects me differently every day. It's impossible to tell if I will have a good day or a bad day. I make the most of the good days so that it is easier to stay positive on the bad days.
The pain and exhaustion fluctuate so quickly that a good day can quickly turn into a bad day with little warning and vice versa.
It's hard to say what other people can do to help. I think the best thing others can do is just take time to learn about my condition and how it affects me. It's very easy for me to pretend I'm fine when I'm not. Its also very easy for other people to assume I am having a good day when I'm not by how well I can come across. Its also very easy for people to forget I am in pain all the time, even when I am having a very good day.
The only way for others to understand how bad the bad days are is to actually see me in bed unable to move and so exhausted I cannot speak. But I find it too difficult to let people see me like this.
Hopefully this edition of my blog will help others to understand a little how hms/eds affects me.
I don't mind being asked about hms/eds, especially if the person asking is enquiring through care and compassion rather than just being nosey.
Because of the complex nature of hms/eds its impossible to get the full extent of the condition across in one or two sentences. So my usual reply is something like "My joints dislocate really easily so I'm in pain alot and get really worn out easily."
I rarely moan or complain about my situation, even on bad days. My non-bendy friends rarely see me on bad days, if at all, and my usual reply to 'how are you feeling today?' is an automatic 'I'm good thanks how are you?'.
Only my fellow bendy friends (those with hms/eds) have a real understanding of the reality of living with the condition.
I'm not keen on people really knowing the full extent of how hms/eds affects me because I hate being seen as weak, a complainer or ungrateful for the good days.
But I think its come to the point where I have too many people enquiring regularly about how I am. I can no longer keep hiding away for half the week, putting on my 'I'm fine' face. So here is that reality for my non-bendy friends and friends of other hms/eds sufferers.
I'm dealing with day 3 of a really bad flare at the moment. A 'flare' for me is when the usual everyday pain and fatigue 'flare' up really bad to the point where I'm either stuck in bed or unable to do anything other than sleep. 'Coma days' are days where I simply sleep right through them, usually 48hr solid sleeps. 'Coma days' can occur without me having a 'flare' in pain and usually happen at least once a week.
A 'flare' on the other hand usually means although I'm stuck in bed and exhausted, my sleep is very broken and difficult due to the pain.
HMS/EDS Pain
Its quite difficult to get the level of the pain hms/eds causes across to non-bendy people.
Pain affects me (and other people with hms/eds) differently throughout the day. There is always some kind of pain going on at any given time.
For me I am always in some level of pain. There is never a time when I am not in pain of some kind. However, when you live with chronic pain, you learn to block out the average day pain. If someone slapped you across the face it would really hurt and you would definitely feel it. If someone slapped you across the face repeatedly without a break you would eventually stop being so affected and shocked by it. It would still hurt but you would get so used to feeling it that you would learn to ignore it.
There are 4 main types of pain that come with hms/eds.
The first is a constant ache that covers my entire body. The best way to describe it is to say it is very similar to that ache you have when you come down with a really bad cold or flu. You ache everywhere with the joints being most painful.
This pain is constant and never goes away. This is the pain that I've learnt to ignore. I still feel it, but I've become so used to it that it doesn't effect how I function.
The second type of pain is when the usual chronic ache becomes more intense than usual. It turns from being like a regular bad cold/flu ache to being similar to the more intense ache you get when you have full blown flu. Most people experience real flu at least once. If you haven't yet experienced it you are lucky as most people will tell you that it is really awful. With real full blown flu the pain is still around your whole body, however it is much worse than the previous example. You are unable to move, even the movement of your ribs during breathing becomes excruciating. This is what the pain is like during a 'flare' for me.
The pain is so bad that I cannot ignore it. I usually am unable to get out of bed during this type of pain. The only thing I can do is to take painkillers and try to sleep through it. However, anyone who has had bad flu will tell you, its very difficult to sleep whilst in this type of pain because it is very difficult to relax enough to fall asleep. If I am able to fall asleep it is usually only for a few minutes at a time. These days are spent trying to distract myself with whatever I am able to do. Usually I am able to have the TV on quietly or listen to some music whilst drifting in and out of sleep. If the pain is starting to diminish, either temporarily or permanently for that flare, I am able to use my laptop to get online or play some simple games. This post for my blog is being written whilst the pain is getting less intense.
The third type of pain that comes with hms/eds is the acute pain that is caused by injury to the joints. If you dislocate a joint it is obviously very painful. With hms/eds not only do you have dislocations, but you also have subluxations. This is a partial dislocation where the end of the bone will move in the joint in a way its not designed to do. For example the elbow might turn more than its supposed to but will not dislocate. Instead it gets stuck partially dislocated. This is a subluxation in it's basic form, still very painful and still needing to be 'popped' back into its normal position. People who know me will be used to me clicking and clunking my elbow and my knuckles to replace a subluxated joint.
When a joint dislocates or subluxates the ligaments and muscles around the joint become damaged in some way. They tend to be overstretched or may even tear. Once a joint is popped back into place the damaged muscles and ligaments will spasm and become very painful usually for a few hours, sometimes even a few days. As well as the muscles and ligaments being very painful, the joint itself will become inflamed as a result of the injury. This is the body's natural response and happens in order to stop the joint from becoming further injured. An inflamed joint is quite sore. Because hms/eds causes the joints to dislocate/subluxate regularly, most people with hms/eds will be dealing with this third type of pain pretty much constantly in one joint or another. For me I have to deal with dislocations around 2-3 times a week and subluxations around 5-10 times a day.
The fourth and final type of pain that comes wit hms/eds is the pain that is caused by permanent damage to the joints. Because the joints are moving much more than they are supposed to, they can wear down which damages the surface of the joint socket and the end of the bone. This leads to osteo-arthritis very early on in people with hms/eds.
I have developed osteo-arthritis in my lower spine, in particular the Sacroiliac joints. These joints are where the bottom of the spine joins the pelvic bone. Normally the joints hardly move at all, but in hms/eds they can be as flexible as any other joint. Arthritis is a painful condition that on its own can in some cases cause serious disability and deforming of the affected joint. In hms/eds the arthritis is a secondary condition which means it's there because of the hms/eds.
Inflammation can also be a permanent condition for some joints, in particular the spine. This inflammation becomes permanent either because the joint is so unstable or becuase the body has got confused and thinks the joint is still injured when it isn't. For me, this constant inflammation occurs in my lower spine and hands.
There are other types of pain that can occur with hms/eds such as pain in the organs that are affected by the condition. For me this happens in the stomach and bowel.
During a bad 'flare' I am usually dealing with the first two types of pain, the 'aches' as well as the pain caused by arthritis and inflammation in my lower spine. The arthritic pain and that caused by inflammation in my hands and spine are triggered during bad flares, especially the spine, which makes it very difficult to move, even to change position in bed. Strong painkillers such as Tramadol, codeine, combined with paracetamol and ibuprofen can help bring the pain levels down to a more bearable level, however they can only be taken every 6 hours and usually only last for 3 at the most. They don't take away the pain but only bring it down a little, but not enough to have me up on my feet. I also take the same painkillers if I have a sudden pain or an build-up of pain in a joint/joints caused from a dislocation/subluxation or inflammation. However due to a rare reaction to medication a few years ago which caused serious effects, I only take my pain medication when the pain becomes more than I can cope with. For those who know me, they are able to tell when the pain is very bad when they see me reaching for my meds.
I use a TENS machine on my spine when the pain is particular bad. This is a small machine that is attached to electrodes on my spine. A small electric charge is passed through the electrodes to the spinal chord blocking the pain signals.
HMS/EDS fatigue/exhaustion
Pain has more than the obvious effect on the body. Being in constant pain requires alot of energy to ignore in order to get on with everyday life. It also drains energy when the pain is particularly bad. As a result, people with chronic pain tend to get worn out very easily. Hms/eds causes energy levels to be seriously reduced anyway due to the muscles using up most of your energy in order to keep the joints stable during movement. So the energy that is ambushed by pain is often the last reserves. This is whey a bad pain flare will wipe me out and cause me to sleep more than normal. If i am not sleeping during a pain flare, I am still too exhausted to do anything other than to dose in bed.
As well as pain causing fatigue and exhaustion, a hms/eds flare will cause the usual fatigue to be worse.
The fatigue and exhaustion caused by hms/eds (not related to pain), is very similar to Chronic fatigue syndrome (CFS/ME). As mentioned earlier, the muscles in hms/eds body have to do all they can to support the unstable joints. This means that they require alot of energy to be constantly working, even when the joint is resting. The amount of energy needed for the muscles can be anything up to two thirds of the energy supply used for other things. 'Stealing' all this energy means there is very little left for the rest of the body to do anything else. Getting out of bed, washed and dressed for someone with hms/eds can be exhausting and can leave them too tired to be able to do anything else for the rest of the day other than rest.
Just like pain, fatigue various in its intensity. For me a good-average day energy-wise is similar to that of a regular person who has had very little or no sleep for a few days whilst still working full time in a physical job. On a good day I can get ready and manage a few hours out in my wheelchair doing some shopping. Or on very good day I am able to sweep the floor in my flat, dust the furniture and take a shower. After that I am usually in alot of pain and so exhausted that I either have to go back to bed or spend the day laid on the settee.
A bad day leaves me with very little energy. Usually just getting out of bed and having breakfast is the limit. Visitors will be asked to forgive me being unwashed and in my pyjamas on these days.
During a 'flare' I may have no energy or very little. These days are spent in bed using my wheelchair to get to the bathroom. I may sleep through most of the day if my pain is not too bad. If pain is also an issue the day is spent in bed dosing on and off listening to music or reading a book if I am able.
People with hms/eds can also suffer from insomnia caused by the pain making it difficult to sleep. A typical night for me consists of two-three hours sleep from which I wake up in pain and spend the rest of the night trying to find things to do to occupy me until daytime. This lack of sufficient sleep makes the fatigue/exhaustion more problematic.
Hms/eds is a condition that affects me differently every day. It's impossible to tell if I will have a good day or a bad day. I make the most of the good days so that it is easier to stay positive on the bad days.
The pain and exhaustion fluctuate so quickly that a good day can quickly turn into a bad day with little warning and vice versa.
It's hard to say what other people can do to help. I think the best thing others can do is just take time to learn about my condition and how it affects me. It's very easy for me to pretend I'm fine when I'm not. Its also very easy for other people to assume I am having a good day when I'm not by how well I can come across. Its also very easy for people to forget I am in pain all the time, even when I am having a very good day.
The only way for others to understand how bad the bad days are is to actually see me in bed unable to move and so exhausted I cannot speak. But I find it too difficult to let people see me like this.
Hopefully this edition of my blog will help others to understand a little how hms/eds affects me.
Tuesday, 8 June 2010
Freedom and Sorrow
Well I've had a rollercoaster of a month with all things bendy.
I finally got my new wheelchair, the ferrari of the wheelchair world. Its a K4 sports chair, designed for wheelchair sports so is ultra light and extremely nippy around town. Even with my pathetic muscles I can push myself in it for hours. The mere idea of popping to the shops for some milk and to post a letter required at least 2 days notice in the past. 1 day to book a friend to carry shopping or push me, 1 day to rest in preparation for the half hour on my crutches or 15mins in the Boneshaker-my other wheelchair, name says it all. But now the only preparation needed is deciding which wheelchair gloves go best with my outfit!
I didn't realise until now just how restricted and isolated I had become. Now I can spend a few hours browsing round the clothes shops or getting 10 tasks done in one outing.
Its taken just 1 week for me to build enough muscle in my arms and stomach to deal with the uphills and uneven surfaces. I haven't mastered doing wheelies down steps yet but I'm already able to tip enough to get up kerbs and can even wheelie on the back wheels while getting 3 or 4 quick pushes in. It won't be long before I'm grinding down the handrail near the war memorial with the skater kids!
I feel like I have some of my life back. I can go out on my own to do the important things like pay bills, get shopping etc. More importantly I can get out on my own to spend time just being outdoors, going to the library and being able to carry books home, getting on the bus on my own! I am so lucky to live in a country where health care is free and even more lucky to live in an area where people like me can be given such high quality performing wheelchairs for free from the NHS (long term loan).
As well as this amazing gift, I have also started developing a social life! 'What, with people?' I hear you say!
Yes!
I've found a church full of wonderful people who already offer to drive me to services and social events. I am terrible at asking people for help so it's so fortunate that they offer before I have to ask. Last week I even made it onto the beach for the first time in over a year, for a birthday party. And even more fortunate that there was a very strong guy who pushed me back up the steepest hill in the world to the carpark at the end of the day.
All this freedom and positivity is having such a good effect. My pain has been worse the last month and my energy is still non-existant, but when you are genuinely happy (as in not faking it so people just think you are happy and coping well), it gives you motivation to push yourself that one step further to get out of bed. This week I went to a bible study group even though I was in more pain than usual and doped up to the eyeballs on painkillers. Normally I would just get into bed and try to sleep through the flare, but I didn't. I got dressed and went to the group, and even though for alot of it i had no idea what was going on because of how ill I felt, I still felt very pleased that I went because I got to laugh more than I've laughed in a long time at the bizarre unrelated tangents we often end up going on.
But as most Bendys know, When there is a positive, there is always a negative following closely behind.
I found out last week that I have a double curvature of the spine. This is quite common in people with Hypermobility Syndrome/Ehlers Danlos, due to the instability of the spine. I had hoped that I had been lucky not to have this, and had been wrongly told by my gp that the x'rays Id had done before Christmas showed my spine to be fine. But unfortunately its there and it's there with a vengeance.
The curvature is causing the lower spine to move in a way that it shouldn't. It's putting all the movement onto the left sacroiliac joint (SI joint-where the spine joins the pelvis). This has caused the joint to grind itself down to the point where it is quite badly damaged. Arthritis is the result of this damage and is irreversible. I understand now why the pain in that area has gotten so bad.
I normally just quickly deal with the next hurdle HMS/EDS brings but this one has knocked me more than usual. It's the long term effect and the problems that could occur that that worry me. It was less than a year ago I had an xray and MRI scan on my spine that came back normal, no curve, no visible damage to the SI joint. So the curve, which is very obvious in the latest xray, and the extent of the damage to the joint has happened in a very short space of time. So where will I be in another year?
Surgery is a big possibility in the future to stabilise the joint and the spine but how soon could that be? Will I need to start splinting/bracing my spine to stop the curve from getting worse? Is it too late for physio to have any effect? Will I be able to walk at all in a years time?
So many unanswered questions.
But to leave on a positive note. After a year of my nurse trying to get a dr to agree to let me use a new treatment to manage the effects HMS/EDS has on my digestive system, we got a 'yes'!. My Rheumatoglist (the bendy dr) has agreed that the only way to manage this part of the condition is to use an expensive and still controversial management treatment. My nurse has said for a while now that my current treatment is running out of 'effective time' and that the only option available is this new treatment. But no other dr would agree to it because they failed to understand (and sometimes believe) that HMS/EDS can have severe effects on the digestive system.
The treatment is one that I will be taught to do myself at home but will be hard work to get used to to begin with. I'm not expecting miracles and I know there are alot of complications that can happen at first but I'm happy to deal with these if it means finding even just a slight improvement of this part of the condition and a definite improvement of quality of life.
All in all this month has had its ups and downs, as is every month when you have a complex multi-system condition. But I have learnt more than ever that it is always better to focus on the positive things and to go to bed smiling, even on the bad days, than it is to allow the bad things to dominate your life.
Happy bending
CX
I finally got my new wheelchair, the ferrari of the wheelchair world. Its a K4 sports chair, designed for wheelchair sports so is ultra light and extremely nippy around town. Even with my pathetic muscles I can push myself in it for hours. The mere idea of popping to the shops for some milk and to post a letter required at least 2 days notice in the past. 1 day to book a friend to carry shopping or push me, 1 day to rest in preparation for the half hour on my crutches or 15mins in the Boneshaker-my other wheelchair, name says it all. But now the only preparation needed is deciding which wheelchair gloves go best with my outfit!
I didn't realise until now just how restricted and isolated I had become. Now I can spend a few hours browsing round the clothes shops or getting 10 tasks done in one outing.
Its taken just 1 week for me to build enough muscle in my arms and stomach to deal with the uphills and uneven surfaces. I haven't mastered doing wheelies down steps yet but I'm already able to tip enough to get up kerbs and can even wheelie on the back wheels while getting 3 or 4 quick pushes in. It won't be long before I'm grinding down the handrail near the war memorial with the skater kids!
I feel like I have some of my life back. I can go out on my own to do the important things like pay bills, get shopping etc. More importantly I can get out on my own to spend time just being outdoors, going to the library and being able to carry books home, getting on the bus on my own! I am so lucky to live in a country where health care is free and even more lucky to live in an area where people like me can be given such high quality performing wheelchairs for free from the NHS (long term loan).
As well as this amazing gift, I have also started developing a social life! 'What, with people?' I hear you say!
Yes!
I've found a church full of wonderful people who already offer to drive me to services and social events. I am terrible at asking people for help so it's so fortunate that they offer before I have to ask. Last week I even made it onto the beach for the first time in over a year, for a birthday party. And even more fortunate that there was a very strong guy who pushed me back up the steepest hill in the world to the carpark at the end of the day.
All this freedom and positivity is having such a good effect. My pain has been worse the last month and my energy is still non-existant, but when you are genuinely happy (as in not faking it so people just think you are happy and coping well), it gives you motivation to push yourself that one step further to get out of bed. This week I went to a bible study group even though I was in more pain than usual and doped up to the eyeballs on painkillers. Normally I would just get into bed and try to sleep through the flare, but I didn't. I got dressed and went to the group, and even though for alot of it i had no idea what was going on because of how ill I felt, I still felt very pleased that I went because I got to laugh more than I've laughed in a long time at the bizarre unrelated tangents we often end up going on.
But as most Bendys know, When there is a positive, there is always a negative following closely behind.
I found out last week that I have a double curvature of the spine. This is quite common in people with Hypermobility Syndrome/Ehlers Danlos, due to the instability of the spine. I had hoped that I had been lucky not to have this, and had been wrongly told by my gp that the x'rays Id had done before Christmas showed my spine to be fine. But unfortunately its there and it's there with a vengeance.
The curvature is causing the lower spine to move in a way that it shouldn't. It's putting all the movement onto the left sacroiliac joint (SI joint-where the spine joins the pelvis). This has caused the joint to grind itself down to the point where it is quite badly damaged. Arthritis is the result of this damage and is irreversible. I understand now why the pain in that area has gotten so bad.
I normally just quickly deal with the next hurdle HMS/EDS brings but this one has knocked me more than usual. It's the long term effect and the problems that could occur that that worry me. It was less than a year ago I had an xray and MRI scan on my spine that came back normal, no curve, no visible damage to the SI joint. So the curve, which is very obvious in the latest xray, and the extent of the damage to the joint has happened in a very short space of time. So where will I be in another year?
Surgery is a big possibility in the future to stabilise the joint and the spine but how soon could that be? Will I need to start splinting/bracing my spine to stop the curve from getting worse? Is it too late for physio to have any effect? Will I be able to walk at all in a years time?
So many unanswered questions.
But to leave on a positive note. After a year of my nurse trying to get a dr to agree to let me use a new treatment to manage the effects HMS/EDS has on my digestive system, we got a 'yes'!. My Rheumatoglist (the bendy dr) has agreed that the only way to manage this part of the condition is to use an expensive and still controversial management treatment. My nurse has said for a while now that my current treatment is running out of 'effective time' and that the only option available is this new treatment. But no other dr would agree to it because they failed to understand (and sometimes believe) that HMS/EDS can have severe effects on the digestive system.
The treatment is one that I will be taught to do myself at home but will be hard work to get used to to begin with. I'm not expecting miracles and I know there are alot of complications that can happen at first but I'm happy to deal with these if it means finding even just a slight improvement of this part of the condition and a definite improvement of quality of life.
All in all this month has had its ups and downs, as is every month when you have a complex multi-system condition. But I have learnt more than ever that it is always better to focus on the positive things and to go to bed smiling, even on the bad days, than it is to allow the bad things to dominate your life.
Happy bending
CX
Wednesday, 28 April 2010
Social Services and Care Support
I have just found out from my social worker today that a care plan has been approved for me to provide me with a carer to support me with personal and social tasks.
Social services have approved the following support for me:
1 hour 3 times a week for a carer to come and give me a bath and get me into bed.
2 hours twice a week for a carer to take me to do my shopping or go to appointments.
4 hours once a month for social stuff eg going for a night out, going for a girly shopping spree with my mum or friends etc.
1 hour once a week for a carer to clean my flat and do my ironing.
There is also a contingency fund so that if my condition deteriates at times and i am stuck in bed they will send a carer to get me out of bed, dressed (if possible) and give me a meal and then come back in the evening to get me back into bed.
I am so happy i can't believe how much support they have said i will get. At first it was only going to be 2 hours twice a week to go shopping and give me a bath. I really hope that getting all of this support will make a big difference. I especially feel hopeful that it will get me back out there and getting a social life back. Iv lost alot of friends over the past year due to my condition deteriating and that is the one thing that i have found hardest of all. I have one friend who visits me regulaly and takes me out in my wheelchair but as he has a milder form of the same condition, he is finding it harder to push me. I also hate my friends having to push my wheelchair or having to rely on friends to go to the bar to get drinks, or help me find a disabled loo, carry my shopping etc. To be honest, I hardly see anyone now so I don't even have the chance to ask them to do these things for me.
It will be great if I can get out more and start spending time with friends again knowing that I won't have to ask them to do anything for me other than just enjoy our time together.
My social worker has spoken to the care agency and they have carer in mind who they said should really suit me. I don't know anything about her yet other than she is young which is what I wanted. That way when we go shopping or out on a night out it will just look like I am with a friend rather than a carer or an older relative.
I feel like this is a massive breakthrough in my region as I don't think there is anyone else with hms/eds who gets care support , or at least to this level. I'm hoping that with them approving this amount of support for me it will make it easier for others with hms/eds to get better support in the future.
People with hms/eds find it extremey difficult to get this type of support due to the lack of understanding of the severity of the condition. It makes it even harder to get support becuase the condition can fluctuate so much within such a small amount of time. This often means that when people with the condition do ask for help, it is refused becuase it is assumed that they can function much better than they can. It is also hard for service providers to provide care on the basis that the support is helpful becuase it PREVENTS deteriation and injury rather than it being as a result of deteriation or injury.
Of the few hundred people I know with hms/eds from the www.hypermobility.org.uk forum and facebook, only a very small handful recieve any support with care. Those who do either have another condition that has justified they need for support or they are at the extreme end of the spectrum being completely dependant on others for even very basic tasks. They often also have children with the condition so the support they recieve is often more support for them to be able to care for their family.
I know of a few people in my town alone, and more in the surrounding area who would benefit from some kind of support from social services, either in terms of care support, or simply with loan of equipment such as bath seats, electronice raising beds etc. I feel positive that with the local social services accepting and approving this level of support for me, that it will mean that others in the area will find it much easier to get the support they need too.
Big step forward for recognition of hms/eds in the care system today!!
Social services have approved the following support for me:
1 hour 3 times a week for a carer to come and give me a bath and get me into bed.
2 hours twice a week for a carer to take me to do my shopping or go to appointments.
4 hours once a month for social stuff eg going for a night out, going for a girly shopping spree with my mum or friends etc.
1 hour once a week for a carer to clean my flat and do my ironing.
There is also a contingency fund so that if my condition deteriates at times and i am stuck in bed they will send a carer to get me out of bed, dressed (if possible) and give me a meal and then come back in the evening to get me back into bed.
I am so happy i can't believe how much support they have said i will get. At first it was only going to be 2 hours twice a week to go shopping and give me a bath. I really hope that getting all of this support will make a big difference. I especially feel hopeful that it will get me back out there and getting a social life back. Iv lost alot of friends over the past year due to my condition deteriating and that is the one thing that i have found hardest of all. I have one friend who visits me regulaly and takes me out in my wheelchair but as he has a milder form of the same condition, he is finding it harder to push me. I also hate my friends having to push my wheelchair or having to rely on friends to go to the bar to get drinks, or help me find a disabled loo, carry my shopping etc. To be honest, I hardly see anyone now so I don't even have the chance to ask them to do these things for me.
It will be great if I can get out more and start spending time with friends again knowing that I won't have to ask them to do anything for me other than just enjoy our time together.
My social worker has spoken to the care agency and they have carer in mind who they said should really suit me. I don't know anything about her yet other than she is young which is what I wanted. That way when we go shopping or out on a night out it will just look like I am with a friend rather than a carer or an older relative.
I feel like this is a massive breakthrough in my region as I don't think there is anyone else with hms/eds who gets care support , or at least to this level. I'm hoping that with them approving this amount of support for me it will make it easier for others with hms/eds to get better support in the future.
People with hms/eds find it extremey difficult to get this type of support due to the lack of understanding of the severity of the condition. It makes it even harder to get support becuase the condition can fluctuate so much within such a small amount of time. This often means that when people with the condition do ask for help, it is refused becuase it is assumed that they can function much better than they can. It is also hard for service providers to provide care on the basis that the support is helpful becuase it PREVENTS deteriation and injury rather than it being as a result of deteriation or injury.
Of the few hundred people I know with hms/eds from the www.hypermobility.org.uk forum and facebook, only a very small handful recieve any support with care. Those who do either have another condition that has justified they need for support or they are at the extreme end of the spectrum being completely dependant on others for even very basic tasks. They often also have children with the condition so the support they recieve is often more support for them to be able to care for their family.
I know of a few people in my town alone, and more in the surrounding area who would benefit from some kind of support from social services, either in terms of care support, or simply with loan of equipment such as bath seats, electronice raising beds etc. I feel positive that with the local social services accepting and approving this level of support for me, that it will mean that others in the area will find it much easier to get the support they need too.
Big step forward for recognition of hms/eds in the care system today!!
Tuesday, 27 April 2010
eds/hms videos
here are a couple of videos that look at eds/hms. Not up to posting a long blog today due to a naff day pain wise but very pleased to say i passed my driving theory exam today Woohoo!!
here are the links to the videos. enjoy!
http://www.youtube.com/watch?v=PunQu-bId1M
http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html
here are the links to the videos. enjoy!
http://www.youtube.com/watch?v=PunQu-bId1M
http://www.ehlersdanlosnetwork.org/mysterydiagnosis.html
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