Freedom! (well, nearly)

 

It’s been a while since I’ve posted here, and it’s not because I haven’t had anything to talk about because actually I’ve been quite productive – just not in the way that I would like to have been. In the 16 or 17 months since the BYM338 drug trial was cancelled, my IBM seems to have gathered momentum and I find myself struggling with so many new things every day. These are not the things that you want or need to hear about, and I don’t want this to become a pity party so I will try to concentrate on the positives…..

 
Spent the winter months trying to get myself as healthy as possible, took vitamins and a myostatin inhibitor capsule (Epicat) I found online much beloved of body builders and athletes, neither of which I am. I did a very gentle yoga-in-the-chair routine every other day which I really enjoyed and every day I tell myself I’m going to start again but for some reason I don’t. I’m sure these things were very good for me physically, but mentally I just seemed to drift down and down, until I had no interest in anything at all and that’s not really like me. Then a friend found something called Ocean’s Alive Marine Phytoplankton and he told us all how well he was feeling since he started taking it and I thought it was definitely worth a go.

 
And it was! My arthritic shoulder and knee stopped hurting so badly, my sinuses cleared and the fog of exhaustion lifted to the extent that I could give up my beloved afternoon nap. Now this wasn’t quite the sacrifice that it sounds, because I’d been struggling to get off the stair lift at the top of the stairs for some time, and I’d often thought that the effort it took to lift my legs into bed far outweighed any benefit I was getting from an hour or so of sleep, but anyway I didn’t feel I needed it any more so that was that. Somehow everything seemed much more bearable and I decided to tackle the wheelchair problem, having been quite disheartened by The Wheelchair Man and the Wheelchair Clinic’s tendency to go round in circles (figuratively speaking, although perhaps quite literally for all I know) as they couldn’t bring me a wheelchair to test drive because they don’t have any with riser seats, but couldn’t approve me for a wheelchair until I’d successfully completed a test drive. To cut a very long and stupid story short, I suggested to them that the best way for them to get rid of my file off their desks was to give me some money towards a wheelchair that I would find myself, and they agreed quite enthusiastically. Took a while to get the contribution of course, and it turned out to be the princely sum of £1800.00, but every little helps, as they say. I found a lovely friendly Wheelchair Advisor from Easy Mobility in Ashford, Surrey, who brought me an Invacare TDX SP2 demo model, complete with rising seat and several other useful features, to try out. I loved it and they offered me a great deal on it, so I bought it.

 
I hoped it would give me more freedom but what I hadn’t taken into account was that I actually need someone to help me with the footrests when I get on and off the chair, and to open/close doors if I want to go outside, so I haven’t used it as much as I’d hoped, but it’s there when I need it. Now, we live in quite a weird sort of place, it’s technically a village but we are on a main road away from the village centre and there’s not really anywhere within pootling distance and there’s no way I’m crossing this busy road in my wheelchair, so the next logical step was to get a vehicle that I can drive my wheelchair into. This sounds like an easy mission. It’s not. I didn’t want one that I would have to sit in the back of, I wanted one where I could sit in the normal passenger seat position, and this limited our options enormously but we found some lovely people in The Wirral (Lewis Reed) who specialise in these conversions and they sorted out exactly what I needed. It’s worth saying at this point that my Invacare wheelchair sits a bit higher than most, so headroom was an additional complication but a VW Caravelle with a ramp and drop-down suspension fitted the spec perfectly plus it came with a free teddy bear so how could I resist? Again, it’s not something I can use without help so I’ve only been out in it once so far, but it was great, and it’s there when I need it.

 
The final development is that I have had to start the ball rolling to get a carer to come in at lunch time to help me make myself decent again after going to the loo. I could pull my own pants up until quite recently but it’s quite a tricky manoeuvre when you need to hold on to something with one hand and the other hand won’t reach behind you anymore and eventually I had to admit defeat. I’ve cut down my coffee consumption quite dramatically but I still have to ask Colin to pop home at lunchtime to help me and he finds this an unwelcome restriction on his busy retired lifestyle. Anyway, the advantage to being in the Care System is that you get access to emergency care if you need it, so if Colin was poorly or needed to go away it should be possible to get someone in to cover the things he does for me, although I’m not sure how they would go about lifting me off the blooming stair lift.

 
On the subject of the stair lift, you may understand this – our local installers don’t, and neither do the manufacturers, but I need the rail on the landing to be modified in some way so that the seat goes up to a height that I can get up from. I envisaged extending the rail and sloping it upwards – we have plenty of room for at least an additional metre of rail, and I could get off at the end where it would be higher, and roll it back to the existing lower bit to get on it. Well of course you can’t do that! The manufacturers want to make an entire new rail (of course they do, at £2.5K+) which incorporates the extra height I’ve asked for right from the bottom of the stairs and maintains that extra height all the way up the stairs, around the bend at the top onto the landing and then stops in the same place as it does now, albeit about 12 inches higher. (I’m old, I work in inches). And yes, without a doubt it would be high enough for me to get off. But how on earth would I get on it? Ladder? Trampoline? Mounting block? They can’t grasp that I need two different levels, one for getting on and one for getting off, because they say I manage alright at the bottom. That’s because it rises up vertically before spinning around the newel post, and when I come down I can stop it before it gets right to the bottom and get off, but of course I get onto it when it’s at its lowest point. Am I making sense? Or does it sound like the ramblings of a mad woman? I know what I mean. I wish they did, it would save Colin having to lift me. The OT said she would look into it and see what could be done… Let’s not hold our breath.