Post Sixteen. Wheelchair Or Not?

I’m currently trying to decide whether or not to buy an electric wheelchair. It is however, an expensive purchase, in the thousands, so if I do, I have to be sure. The problem is, I’m not sure.

If I go for it I will first have to get over some significant emotional barriers about what this means for me. Does it mean I am ‘giving in’ to my illness? If it does, is that bad? There’s little point in pretending that I don’t have ME, that I’m not severely incapacitated by it. Will I become too dependant on it and risk deconditioning? I don’t think so. I can walk short distances and I don’t plan on using the wheelchair to get somewhere I can manage by foot, I like to use my legs when I can. So I’ll still be walking the same short, and infrequent distances as I currently do, and I had it confirmed at a recent hospital appointment that my muscles have not (yet anyway) deconditioned. Will I feel self-conscious and embarrassed to use it in public? Probably. I already feel self-conscious and embarrassed to use my walking stick. Will people treat me differently when they see me as a wheelchair user? Possibly. This article in The Pool suggests that 25 per cent of Brits find it “uncomfortable” talking to disabled people. Apparently some people feel they have nothing in common with disabled people. Will the people who once felt they had things in common with me no longer feel that way? Has my personality now reduced down to nothing but ‘chronically ill person’? To be honest I think some people already do feel that. They can’t see that despite this life-changing illness I am still the same person, with the same interests, the same morals, the same passions, the same dreams and the same goals, it’s just that my body no longer works as well as it used to. Something I struggle with is that my illness is ‘invisible’. Generally speaking I look ‘well’. There’s no way that someone who didn’t already know could look at me and know that I have a severe debilitating chronic illness/disability. So a wheelchair would solve that problem, wouldn’t it?

There are many situations that I currently avoid. On a better day I can manage the walk to the post office and back, although not without PEM (post exertional malaise). But this is based on not having to stand in a queue, and I can’t possibly know ahead of time if there is a queue or not, so I don’t risk it. A wheelchair would change this. There are also many activities that I simply cannot do, that are far too much for me, that I don’t have the energy for and that my legs wouldn’t manage. Like walking to my mum’s house, or having a wander along the High Street to visit my favourite coffee shop that is just that bit too far for me to walk (I’m talking about you Coltman’s). When I go out I might be able to stay out for longer while maintaining my energy levels. On better days I could do these things with a wheelchair. Note that this would still have be on a better day, I might have wheels but I’d still have ME, I’d still have daily widespread pain, debilitating exhaustion, dizziness, brain fog and sensory overload. Having an electric wheelchair won’t undo any of my symptoms, it will simply give me access to a higher level of mobility than I currently have. So far, I’ve begrudgingly accepted my current limitations, the fact that I’m mainly housebound, that many activities that used to be so everyday and normal for me are now off limits, I don’t like it, but it is what it is. But maybe it doesn’t have to be? With a wheelchair maybe I could regain some of my lost independence and freedom, maybe it would open my world up. If I can get past my fears and insecurities it could be wonderfully empowering.

I do however have concerns, some rational, and some possibly less so. I’m concerned about how much I will use it, will it be worth it? Like I said, the arrival of a wheelchair is not going to suddenly improve my health enough that I can start going out every day, or even every other day. What if I only get use out of it a couple of times a month, is that enough to justify the cost? I also have to think about the overall use of my already limited energy. If having a wheelchair will allow me to go out more frequently, will I actually end up using more energy on these outings, energy that I wouldn’t have used otherwise? Should I accept and stick to my limitations, remain mainly hosuebound in the hope that only prolonged rest and limited activity will allow me to recover? Maybe. But this existence has already damaged my mental health, so what will a few more years, decades, or a lifetime of this do to me?

One of my main concerns is based around the fact that I can walk short distances. I worry about what people may think, or say, when they see me get up from my wheelchair and walk. There’s a horrible meme that I’ve seen on Facebook a few times, (which unfortunately means that I have friends who have ‘liked’ or shared this meme). It’s a photo of a woman standing from her wheelchair to reach a high shelf in a supermarket. The caption reads “There’s been a miracle in the booze aisle!”, or something along those lines. It’s cruel, it’s ableist, and not in the least bit funny. I don’t want to become a meme. Some people seem to think that wheelchairs are only for those who cannot walk, at all, ever. I read The Mighty, an excellent website full of personal accounts written by people all over the world living with various illnesses and disabilities. I’d recommend it for anyone, it has aided my understanding of the vast world of illness and disability immeasurably, and couldn’t we all use a good dose of increased empathy. I come across a new post pretty much every day about people judging disabled people. Either they don’t look ‘disabled enough’ to use that parking space, despite having a Blue Badge (or the equivalent in their country), or they look ‘adequately disabled’ in their wheelchair, but then they rise from their wheelchair and their spectators think ‘my god it’s a miracle’, or more frequently, they think the person in the wheelchair is a fraud. This kind of thinking is common, far too common, I read these stories frequently. Many people judge and make assumptions, they lack the ability to consider any set of circumstance other than their own, they view disability in black and white, rather than the many shades of grey that make up the world of disability and chronic illness. I don’t want to be the person being judged for getting out of my wheelchair when I can, need or want to, and I don’t want to be the butt of anyone’s jokes, especially not when I’m already going to be feeling all sorts of self-conscious and vulnerable sitting in my wheelchair.

Of course, when I’m able to temporarily push my fears aside, when I’m thinking rationally, or when I think about how I would advise someone else, it’s a different picture altogether. I view a wheelchair like a pair of glasses. People who don’t have perfect sight wear glasses, or contacts, to aid their vision, and some people use wheelchairs to aid their mobility. It’s an aid, something to help and enhance a person’s quality of life. No one judges me for aiding my vision by wearing glasses when I use the computer or read, so maybe no one will judge me for aiding my mobility by using a wheelchair, and those who do view me differently, well, do I want them in my life? And I know I shouldn’t care what strangers think, but I do, sadly. When I’m able to think positively about this new world of mobility, I already know where I’ll go first. My favourite walk, in the valley behind my mum’s house, it’s so peaceful, the town is completely out of sight, and maybe this sounds cheesy, but it’s where I feel closest to my dad, we walked here together so many times. The wheelchair I have my eye on won’t manage the whole walk, I’d need an all-terrain, four wheel drive monster of a wheelchair to walk the full thing, but just a glimpse of the valley would be enough for me. The thought of being able to go out and not worry about how long my legs will hold me up, or whether my lightheadedness or dizziness will overwhelm me, well that thought brings me nothing but joy.

The wheelchair I’ve been eyeing up is lightweight and foldable, and of course it’s electric. I don’t have the strength in my arms to self-propel, I mean, I couldn’t even squeeze the juice out of a lemon the other day. And I don’t want to be reliant on someone pushing me, that defeats the purpose entirely. The reason I have to be absolutely certain about this is the cost, it’s incredibly expensive, around the £2,500 mark, possibly more depending on what accessories I buy, like a second battery etc. Before you ask, no, an electric wheelchair, for me, is not available on the NHS. If I want it, I have to buy it. There is however another option. Crowdfunding. It is not uncommon at all, actually it’s incredibly common, for people to crowdfund their electric wheelchair. I don’t know how I feel about this, actually I do, I feel really uncomfortable about this. I know it’s not exactly the same as a person asking for sponsorship to fund their amazing holiday to Peru so they can hike The Inca Trail to Machu Picchu, under the guise of ‘charity’, but the idea of it makes me squirm all the same. So I ask you, how would you, my friends, family and readers feel about me crowdfunding my electric wheelchair? Would it be really cheeky and/or presumptuous of me?

There’s another option, I could reapply for PIP (Personal Independence Payment), a benefit that helps with the extra costs of a long-term health condition or disability, it’s the one that is gradually replacing DLA (Disability Living Allowance). I did apply for this a couple of years ago, I attended the horrendous face-to-face assessment, the assessor lied in his report (for example, he claimed that I made my own way to the assessment centre, even though my mum drove me, which he knew, he gave her a form to claim back her petrol expenses) and the DWP turned me down. Despite the fact that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, I didn’t fight it, I simply didn’t have the energy. I also felt that I could manage without PIP, I had my ESA (Employment Support Allowance) and the rental income from my flat (minus the letting agency fee, mortgage, insurance etc), so I wasn’t feeling hugely driven to challenge the result. Something really annoying though, I really could use a Blue Badge, which means when I go to the GP, or to the hospital, or anywhere that has designated disabled parking, my mum could park there. But, in the region in which I live (Scottish Borders), I can’t apply for a Blue Badge without first receiving PIP. So, to get a Blue Badge, I would need to reapply for a benefit that I don’t really need, then apply for the Blue Badge. It’s ridiculous. But actually, the more I think about it, I could use PIP. It would take time to save up, but it could pay for my wheelchair, it could pay for the expensive experimental treatments that I currently cannot afford, acupuncture for my chronic migraines, for example. It could pay for my counselling (currently paid for by a kind benefactor), it could pay for my supplements and my private prescription for Low Dose Naltrexone. The more I think about it, my illness/disability does incur many costs, having ME is expensive, and that is exactly what PIP is for. But do I have it in me to go through the traumatic (no exaggeration) application process again? I don’t know. My mental health is fragile, and the DWP are certainly capable of pushing me over the edge.

One of my biggest bugbears in life is unsolicited advice, people advising me when I haven’t asked for advice. But I am now asking for advice, your advice is very much solicited. What should I do? What would you do? Should I feel self-conscious? I know you’ll say I shouldn’t, I guess what I really mean is, can you understand why I will feel self-conscious? Can you empathise with me? Have you ever had judgemental thoughts about someone who can walk short distances using a wheelchair? Did you laugh at that internet meme? Do you think it means I’m giving in to my illness? Do you think it will hinder my recovery? How should I pay for it? Can I crowdfund this without people thinking “cheeky cow, pay for your own mobility aids!”? Should I put myself through the harrowing process of applying for PIP which will undoubtedly end up at a tribunal (most do)? Or, could it be one of the best possible things I could do for myself? I just don’t know. I really don’t.

Update: The day after I published this I had a moment of clarity regarding the fears that are holding me back. You can read about this here… Post Sixteen Continued… Wheelchair Or Not. An Afterword.