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.

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14 thoughts on “Post Sixteen. Wheelchair Or Not?

  1. I hired a buggy from ShopMobility. Worth checking out. Try different types. I’d prefer an electric mountain bike, but can’t afford one. In same situation regarding pip. A bionic suit that flies and leaps tall buildings in a single bound may be better?

    Liked by 1 person

  2. Earlier this year I bought an electric wheelchair, after using a manual wheelchair (non-self propelling) for 2 years.

    Initially I was self-conscious, especially around the streets where I live. Nobody who saw me walking knew I was ill and suddenly I’m in a wheelchair. But, after 3 months, I no longer care what people think. My family know what I’m like when I try to walk so they encourage me to use the wheelchair.

    I regularly get out of my wheelchair (both electric and manual) when I am out, in coffee shops and restaurants. My muscles seize up when in the chair so it becomes uncomfortable after a while, so I need to get out of the chair occasionally. My family sometimes jokingly comment ‘it’s a miracle’, but you have to laugh or you’ll go crazy with this illness.

    I was also worried about deconditioning. I am able to walk short distances, slowly and with pain, during and afterwards. I decided that I would still walk once a day to prevent deconditioning, walking my dog for about 20-30 minutes in the morning and occasionally I might walk if I am making a short visit to to a supermarket or to town. But I also use the electric wheelchair daily for walking my dog in the afternoon or making a longer trip to town or shopping. I think people have got used to seeing me in my wheelchair sometimes and walking at other times.

    I don’t feel like I’ve given into ME. The wheelchair makes me feel that I have a lot of my independence back, I no longer have to depend on others to go places and it reduces the muscle pain so I sleep better. My only regret is that I didn’t get it sooner.

    I bought a Roma Sirocco second hand on eBay from a mobility shop. It was £459, instead of £1,300+ new. It came with brand new batteries (a must for a second hand chair or scooter from what I’ve read). It was almost like new, probably a shop demo model. The tyres looked like it had never been used outside and it had one minor scratch. I love it, and don’t regret buying second hand.

    Liked by 2 people

  3. FANTASTIC post! I’m in exactly the same situation…Except I was finally forced into a wheelchair by my ME becoming so severe that I had no other way of getting into the doctor’s office! So, I realised I just had to get over myself and other people’s attitudes to disability. So, I’d say “Go for it”.

    After pretty much being housebound for years my partner and I are now talking about all the places we can go. A world of possibilities has now opened up compared to before when I was more well but refusing to use a wheelchair.

    Now I just glide through the crowds thinking: “Meh, you’d never understand anyway” (and my partner, who pushes my wheelchair, seems to enjoy running over the toes of drunk people that don’t move out of the way! Eek!)

    Regarding funding, have you thought about going through PIP with a disability advice charity to support you? This is what I’m going to do and hoping it’s going to take at least some of the trauma out of it. The thing is it seems that one needs PIP to ‘prove’ we are disabled. And we are certainly disabled!

    Good luck, and thanks for writing such an articulate piece on this topic.

    Liked by 2 people

  4. I identify so strongly with all of this; the dilemma, the worries about how other people will see me,the worries about how I would see myself,about how to pay for it and even the ‘miracle’ of rising from the mobility scooter in the supermarket to reach something on a high shelf.
    Im currently feeling angry that we have to go through this on top of everything else!
    I learnt a couple of things ;
    Firstly as another poster says, get help with applying for pip. I used the ME association guide and the CAB helped me fill in the forms. I had someone sit with me in the assessment interview too. It worked!
    Secondly I made mistakes buying a secondhand electric wheelchair. It is too heavy for me to handle and put in my car. I am going to sell it and look for a lightweight folding one. I got a secondhand mobility scooter with my PIP but I am limited where I can go and find the tiller mechanism painful after using it for long. So I aim to sell that too and invest in a really good comfortable one. I think it would be a great investment so I too would be glad of any recommendations. I have to put it in the car myself so it has to be light and easy to fold.
    Thanks for posting on this great topic!

    Liked by 1 person

  5. I bought a Quingo Flyte; really expensive, but all I have to do is fold it up; it loads itself into my (small) car on its own ramp. I love my scooter. I get up and leave the scooter when I need to, and reckon that if other people have problems with that, it’s not actually *my* problem. I’ve certainly not had comments at this point. I do find that because I’m not at eye level, perhaps, I’m largely invisible in queues…perhaps people think that I’m just loitering, waiting for an able bodied person to do my shopping for me… don’t know…but have found that a polite reminder that there *is* a queue usually works… I see my scooter as enabling me to have a certain level of independence that I wouldn’t have otherwise. ‘Giving in’ to my illness was never in my head. I grieve for the active life that I have lost, but I won’t let that stop me doing what I can, when I can, using whatever aids I need to. It’s not perfect, but it is what it is.

    Liked by 1 person

  6. I came here from your comment on the post about buying your own wheelchair on The Grauniad website. I’ve had ME for 25 years, and am 68 now. Before PIP was introduced I had DLA, indefinite, for the last 12 years or so, top rate Mobility and lowest rate care. About a year ago I got the call to transfer to PIP, and I was awarded lower level of both rates, lost my Motability car on 1st November. I finally got to Tribunal a bit over a month ago, and was awarded top rate for both.

    Concerning PIP, I highly recommend Fightback4Justice (a non profit company) to help with filling in the forms. They can help over the phone (they’re near Bury in Lancashire) even if you can’t get to them. Because I live in Liverpool, so am not so very far from their base, I was lucky enough to have an advocate from them attend my Tribunal with me (I paid a fee, not a lot when you consider how much legal expenses can be, plus travel expenses). But they will help over the phone before hearings – of course should you decide to apply for PIP I really hope you get it without having to go as far as Tribunal!
    https://www.facebook.com/FightBack4Justice/

    Another, considerably cheaper, option is Benefits and Work. It was using their advice to members that I was able to move from having to fill in DLA forms every 3 years or so to getting the indefinite award. Which meant I was able to get a Motability car, which has been a real life-line to me over the years. (Will hopefully be shopping for a new one when I go home from the holiday I’m currently on in a caravan in Wales)
    https://www.benefitsandwork.co.uk/

    Another website I’d like to recommend to you is the Forums on Phoenix Rising. Lots of information on lots of helpful topics, both medical and practical. And friendship too. 🙂 There are some decent medical professionals on the forum, which is nice. It’s an international site, but there are quite a lot of UK members. You can find me there as ladycatlover. Oh, and thanks for the follow on Twitter 😉
    http://forums.phoenixrising.me/index.php

    Good luck! Do go for PIP! You are entitled so far as I can see, the difficult part is proving it for ME Yes, it’s a hassle with the form filling and the face to face with a so called “medical professional”, but it can be worth it to get the financial help to pay for help, and/or a car or at least something towards cab fares. I no longer drive (don’t feel well enough to risk it), husband drives me. I’m very very lucky that husband was able to buy a car that I can be driven in (need something high as can’t get down into “normal” cars), many people who lose their Motability cars can’t afford to buy and run a car, even with the payment Motability make when it’s lost.

    Do feel free to contact me if you want to ask about anything I’ve mentioned. It may take a while for me to reply as have complications other than being on holiday.

    Best wishes from Bwlchtocyn, Maggie

    Liked by 2 people

  7. I’m on second Shopmobility buggy. First one was too rattly. New one has spongier tyres. It’s worth thinking about the roughest terrain you’re likely to encounter and considering comfort as major factor. I’m vibration sensitive and first buggy set off a bit of a flare up.

    Liked by 2 people

  8. Hi Phoebe, I don’t know if you remember me but we went to High School together. I’ve been reading your blogs and I think it’s incredibly brave, and important, for you to share your story. I’ve learned a lot about ME from reading your posts (which are excellent- engaging and fierce) and, for what it’s worth, I don’t think you should think for a minute that it’s ‘cheeky’ to raise funds for a wheelchair via Crowdfunding. I think it’s a brilliant idea. It encourages people to think differently and anyone who’s met you will want to support you to continue to be independent. This gives them the chance to do something positive when finding the ‘right’ words is sometimes tricky. Anyway, I just wanted to say I’m thinking about you – and I’ll be keeping everything crossed that you make your target. Xx

    Liked by 1 person

    1. Hi Jenny, yes I do remember you! Thank you so much for your lovely comment, and thank you for your donation, that’s really very kind of you. I hope you’re doing well. Thanks again. x

      Like

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