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!
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


1 comment:

  1. Carrie,

    I hope you find some good help for your spine soon! And I'm delighted you've had some good things to help you. Indeed it really does help in taking that one extra step just to have something happy. In my case a kindness from a guy at work (spending half his lunch talking to me about ideas to make work better for me, a whole-page single-spaced e-mail on the topic, and a half-hour installing and teaching a program) really helped put me on a roll to make some changes (like finally fork out money for Dragon, broaching current difficulties with HR, and getting back into the land of the living by making little efforts to, like you, spend more time with people despite how I feel even if it means just spending a bit of time in the lunchroom rather than crashed quietly on a joint-easing couch). Though the man seems to have little idea how much he helped me, it has been immense. Most people wouldn't think the little effects would be so monumental and freeing...but when life is made of mostly tiny steps, they are indeed! And thus, though I don't have all the same issues or same degree of problems, I can grasp these things better than I would without HMS. Oh, I am positively delighted for you in the good! The wheelchair sounds amazing and like a good way to prevent/stall/reverse some deconditioning. I'm praying for you, lady, that you'll find some relief for body and soul, and come to know that ALL things work for good for those God calls as Christians (Romans 8:28). If I can make a recommendation on works on suffering, the Puritans are masters!

    One thought...maybe if you kept a record of things all together, like how going to the study and birthday helped you, it would help you take the extra step more often.