Making a Big Decision - choosing mobility aids
Power chair or not?
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(This is a great song and has been in my head the whole time I’ve been writing.)
Hello Red Cabbage Head readers, (Cabbage Reds?)
How is the world with my fellow chronics? For the new people I have ME (myalgic encephalomyelitis) often know as CFS (chronic fatigue syndrome) a mane I disagree with and dislike greatly as it doesn’t encompass in any way all that ME is. I include it purely as that’s what a lot of people know. I’ve been living with this disease for 15+ years and I’ve tried an awful lot of things, to help, 99% of which haven’t.
So we’ve come to the point where my walking is awful. Actually, we’ve been there a very long time and I’ve fought it every step of the way. (See what I did there? Puntastic!) I regularly push myself and over exert myself in an attempt to feel and look ‘normal’ - internalised ableism is real - and of course it never works, I’m always shattered afterwards and needs many days of hard resting to recover. Even admitting I’m disabled is difficult.
I do have a manual wheelchair, bought around 10 years ago now. Only lightly used. When it was purchased we chose one with big wheels so I could push myself around; except now I can’t, I don’t have the energy in either my legs or my arms, and I feel so guilty asking R to push me in it (weight gain hasn’t helped) and I feel powerless in it because my autonomy has been taken away - I have to ask him to stop and let me look at stuff or go a different way etc. I hate it intensely. People look at you differently in wheelchair, their assumptions are often that if you can stand and walk a little you shouldn’t need a chair at all, or that you don’t look ill enough, or that you no longer have a brain and need talking to like a child or, worse, over the top of you but yet still about you. They can try to take control, moving you without asking for example. I hate this intensely. Did I already say that? Yes I did. Must be true then.
So having been away for a couple of days I took stock. We had one day where I walked, albeit slowly and with my new elbow crutch - physio recommended - and one day where R pushed me around. I’m using the Visible app and heart rate monitor atm and so I can quantify the energy used, and surprise, surprise using the wheelchair is good for me!
It’s taken me years to come round to the idea of NEEDING a wheelchair. I think it’s because it’s not a spinal injury, it’s not an amputation, and I can stand and walk if I absolutely need to. Even without a stick if I don’t mind doing myself the injury of energy depletion. I feel I don’t deserve it because others are worse off than me, and then I look dispassionately at it and see that actually I’m quite bad.
So, I’m hoping to get an electrified power chair to give me back that sense of autonomy and I’m looking at getting a roughty, toughty one so I can go on walks again with R - the major thing I miss doing with him. It really is the one thing I miss most I feel. Every day he and the boy disappear off for up to 3 hours (more often an hour and a bit) with the dog and go the most wonderful of places - I mean my most visited place is the sofa so almost anywhere would be wonderful to me - and come back with fabulous pictures and stories of who they met, animals they saw (owls, hares, hawks, new lambs, even chickens sat in a line on a gate, etc), and I try to live vicariously though these tales but I’m also quite a bit jealous. And then I feel guilty about feeling jealous. And then I feel cross at myself for having a shit illness and not being able to get better (there’s no cure so I shouldn’t really beat myself up about it - the NHS here offers a big fat zero really. I have partaken in 3 ME clinics so far - on the wait list for another - and an ME Zoom course where we participants taught the course leaders more than they taught us. There are no infusions, no pills, no therapies offered. Though you can get 6 weeks of CBT which, when I did it, was 6 weeks of gaslighting you telling you you needed to think yourself better. I’ve thought a lot over the years, really hard, about being better, I’ve tried and tried and you know what? It didn’t work.)
So at the moment I am on the cusp of a decision. If I go for a powered wheelchair (off road or not) am I giving up? I feel old. It’s affecting my choice of what I will look at. I don’t want an old lady mobility scooter. I don’t want a massive thing that looks like a ride on lawnmower. I want funky. Young. Something I won’t be embarrassed to be seen in (thanks society for telling me all my life how people are going to make judgements about me based on how I look and me struggling to throw that off!).
On one hand it feels like giving in, to finally accepting that this is it, I really will never get better, that any break through won’t come in time for me now. A feeling that is amplified every time I ask R to push me around. And on the other there’s a bit screaming about deserving a life still, that I’m still young (ish) and I should be able to go out and about without worrying about how ill I’ll be for days or weeks afterwards. I’ve still not recovered baseline from well overdoing it in January. It’s September now. That should have taught me a lesson back then, even if it was just about assertiveness. (written about here). And I don’t really want to think about it too much, it’s a bit upsetting, I’ve been this bad before and it took 2 years to recover to my previous baseline, which still wasn’t good. Looking at wheelchairs makes me think about it.
So why don’t I deserve a break? I think I do. And I also don’t. My mind is going round and round in circles. I know what I want. To go on rambles with my husband and the dog. I know what I need, an off road powered wheelchair that doesn’t make me feel like a twit AND is capable of going round the streets and shops if needed. a) these things are hard to find - I’ve spent hours and hours searching on the internet b) a lot are too large for the boot of the car and it needs to fit in there or we can’t take others with us - or the dog which means we would rarely go out and use it which makes it a complete waste of money, and the car is new and we can’t change it for 3 years and I don’t want a van and c) they are SO expensive. They start at £4K and go up to £12K - the one I would prefer is, of course, the £12K one which we can’t really afford. So I need to look out for 2nd hand ones, which are as rare as rocking horse poo. Which means waiting. Which means I start to doubt myself. Which means I give up for 24 hours because I feel I don’t deserve it. Which means I get cross. Which means of course I deserve it. Which means I scour the internet again for alternatives. Which means . . . . And round and round we go. I’ve been round the cycle at least 5 times in the last 2 weeks.
Now isn’t that above funky and fun?
In an exchange with
we ended up talking about people who say that they ‘don’t do sick’ and the place of privilege that person is talking from. It’s all very well to say ‘I don’t do sick’ when you aren’t the one affected. And should that person very end up long term sick you can guarantee they will be the complete opposite and expect all the help, sympathy, and compassion a person can muster. Its not a choice. No one chooses to be ill long term.My MIL is still a bit like this with me with often saying ‘are you not better yet?’. It’s been 15 years with an incurable illness, that she knows is incurable, ‘no not yet!’. Last week she asked R how I was, and he was truthful and said not too well from going out ONCE and she laughed 😡. R told her it wasn’t funny and she was quite affronted and said I shouldn’t go out then! Yep, that’s what I should do, other people don’t like to know about people being ill. So we should all hide away and never do anything, (And this is from the worst complainer in the world!)
And that pushes me back to I deserve it. Fuck them all. All the non believers, all the gaslighters, all the self opinionated twats who like to over share too much. Fuck them all. But . . .
Ug! I’m testing out a couple of all terrain power chairs in a week and a bit. I’m sceptical. We are still looking at 4K. Not an insignificant sum. I won’t qualify for an NHS voucher as I don’t use a wheelchair inside the house. I use a stick and furniture surfing. So I need to self fund. And I still need to persuade myself this is a good use of the money. I feel guilty even thinking about spending money I don’t bring in, and just on me. Money that could buy something for everyone to use. Something that doesn’t require others to lift it into the car, to assemble it, that doesn’t inconvenience them.
Emotionally I veer from excited about what could be, holidays where I can actually explore, adventures with the family; and being distraught and on the edge of tears about my illness and how I can’t afford the best one, even though it probably wouldn’t fit in the car anyway and I may as well give up and just accept my fate. It’s as bumpy a road as the tracks and trails I wish to be on.
So, I don’t have a great resolution to this ‘essay’, there is no answer as of yet. I may do another when I’ve worked it out. So ta-ra for now. Take the best care you can, and rest well.
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I'm so sorry it's all so difficult. I have just enough experience with all of it (overdoing and its aftermath , frustration, jealousy, guilt, internalized ableism, pain management classes, clueless "help" from others, people who just don't get it) to empathize deeply. I hope you can choose whatever will give you the most of the life you want to live. It is so short. We all deserve accommodations for our needs.
Oh Tamsin, I really relate to this, a lot. In fact you have ''stolen'' quite a lot of what I was going to write in my post today... (It''s ok, I forgive you!! ;)) For what it is worth, I think you should go for it with the power chair, you know you need it, and it will really impact your life for good, so sod anyone that tells you otherwise - including that damn ableist inside voice of yours!!! I am in the same boat at the moment, having used a mobility scooter a few weeks ago for a festival, I realised how much less energy it takes up compared to the stick, or even my rollator (which I HATE with a passion, but it helps, a bit). It is really shitty that they cost so much though, it really is the only thing holding me back from looking into them - I haven't even tried to look for one because I know, like you, I will find 'the ideal one' and not be able to afford it!! This shitty illness is bad enough without wasting mental exertion trying to work out what mobility aids we can afford - we deserve them as much as the next person, so what we still have our limbs, we still can't use them properly!!! Anyway, thanks for sharing, I am thankful for you, and others on here for being honest about the realities of chronic illness which we all live with, you've got this!!