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!!!
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