Adventures in an Electric Wheelchair - Part 8

In which I get a little sad and a tad cross, but turn it around at the end

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Hello Red Cabbage Heads

How is the world with my fellow chronics? For the new people I have ME (myalgic encephalomyelitis) often know as CFS (chronic fatigue syndrome). I’ve been living with this disease for 15+ years now.

This is the story of persuading myself to buy an electric wheelchair so that I can experience the wide world again. I chose the Mountain Trike, an off-road chair, as I wanted to go on decent dog walks and picked one up just after New Year.

This is a post I don’t want to write. I am SO disappointed. We have had the trike now for a month and I have only been well enough to take it out a few times. And it’s been tough. It hasn’t coped with the hilly roads round here. We took it somewhere flatter and the steering broke. Then we took it out again, having mended it first, and it struggled and I struggled. For an off road outfit it didn’t like any type of hill, it didn’t like a little mud, it struggled going up a slope and R had to push it as well. It just didn’t have the oomph it needed. And the steering was still stiff and it took a lot of energy to twist the handle. Not as much as when it broke, but still a lot. And I was quickly shattered. And of course doing too much with MECFS means you pay for it for days afterwards. And, and, and (bad writing there - tut tut Chennell). It takes me at least a week to properly recover from that sort of energy over expenditure.

It seems I didn’t write in detail about testing out this particular wheelchair, but I had already subscribed to my Visible device and was able to measure the amount of energy it took to use the wheelchair at my test session. In that 1.5 hour session I used 2.8 pace points (these are like spoons for those used to the spoon theory). I get a total of 12 points to use through out the day. So to use 2.8 for this activity was a good exchange in my book.

Trying out the wheelchair over these 3 times this month has used massively more pace points than previously. 10.1 for a slightly longer session of 1 and 3/4 hours, then 7.7 and 7.6 for around an hour and a bit. Out of 12 available points that’s too high an energy usage. I think it’s all the wrestling with a steering system that still isn’t right. (It was fine when we tried it out when we bought it and before the adaptations went on.) Now my wrists hurt a lot after using it, causing my arthritis to flare in my hands and holding the levers is consequently painful.

We are going to take it up to the moor sometime in the next couple of weeks, my health and weather permitting, and see how it fares up there. If it’s not as good as the Robooter I tried out then it’s not fit for what I want it for. I can remember exactly where I took that one and how well it did so I can compare exactly. I’m not holding my breath at the moment though.

I can only hope that a) when we take it back to the service centre where they did the adaptions and serviced it that they fix the stiff steering and lack of power, and b) I get maybe more used to it and it doesn’t cost so much in energy cos otherwise it’s going to have to be sold on. It’s too expensive a piece of kit to rarely or barely use. The other chair we bought last week for non off road bimbles was £425 compared to the £5500 this one has cost.

So obviously R is still going out and about cos his body works better than mine, despite his dodgy hips, and he is taking videos of newborn lambs, and telling me of the spring flowers he is seeing, the barn owl he saw, the hares and rabbits, and deer, don’t forget the deer, and I’m SO JEALOUS! It’s a horrid emotion to have, it makes me feel physically awful, and I feel guilty for being jealous of my own husband. And then bad for feeling guilty when jealousy is a perfectly normal and allowed emotion. And I’m so frustrated at this frigging illness and how much it has robbed me of. I’m cross. SO CROSS. SO CROSS! Can you tell I’m cross? 😡🤬😭💩💀😖🤬😡 here are some emojis to help us process my feelings.

I suppose I will probably have to find other ways to get to the moors. We will be that couple that park in a lay-by with a fold out picnic table and our thermos flask tea enjoying the view. The ones I always laughed at when I was a teenager. That will be us. I’m not giving up on getting up there somehow.

Photo by Max Harlynking on Unsplash

Anyway, that’s all for now, I’ll update after the moorland trip🤞🤞🤞.

Ta-ra, Tx

☕️ buy me a coffee here ☕️ to help assuage my sadness ☕️

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