Oh goodness. Even writing the title of this post has made me nervous.
Before we go any further, we’d better get a few very important caveats out of the way. First and foremost, walking is not the ultimate dream or end destination for every wheelchair user. Safely and sustainably increasing walking capabilities isn’t possible for every chronically ill person, and it should never ever be forced. By increasing my walking distance, I haven’t in any way ‘defeated’ or ‘overcome’ my long-term illness, nor is this one of my biggest victories or achievements as a chronically ill person.
The ableist take-home point from this blog post would simply be that I can walk a bit further. The non-ableist take-home from this blog post is that walking or no walking, using a wheelchair has changed my life for the better.
Phew. Now we’ve got that out of the way, where do we begin?
I’d been mildly ill with my condition since I was a teenager, but it was only after my health rapidly declined that my struggles were taken seriously. Following a referral to a specialist in 2014, at the age of 20, I was finally diagnosed with ME/CFS. At this point in time, my symptoms meant that I could barely leave the house without days or weeks of suffering afterwards, let alone live a life anywhere near the one I wanted. It was a miserable time, and I remember feeling utterly helpless about it all… until about a year later, I decided to have an honest and frank conversation with some of my chronically ill friends, and then my parents, about the possibility of using a wheelchair.
It had taken me a while to come around to the idea of using mobility aids. As somebody with no prior experience of disability before becoming ill, I’d internalised the idea that many of the non-disabled public fall victim to – the belief that mobility aids such as wheelchairs are a last resort, a worst-case scenario, something to turn to when there is absolutely no other option.
Thanks to the marketing of these mobility aids still featuring mostly elderly people, it had never even occurred to me that a wheelchair could be anything other than what my own internalised ableism was telling me. As I mention in one of my most-read blog posts of all time, it was social media that was my saving grace – seeing other young people, including some with ME/CFS, speak positively about their mobility aids and use them with style and grace gave me the confidence I needed to finally embrace this new path.
Shortly after this, I acquired my first transit wheelchair. I proudly named him George Ezra and he became the established sixth member of our student house. Original George Ezra sadly didn’t last too long on the cobbled streets of York, so I now own his successor George II, as well as a majestic power-chair named Janice. Beginning to use mobility aids wasn’t without its challenges – something I discuss in more depth in this past FAQ blog post – but it was clear from beginning just how much of a difference they made to my condition management and my overall health.
Let me try and explain. One of the characteristic symptoms of ME/CFS is something called post-exertional malaise – the worsening of symptoms following physical or mental exertion, lasting for hours, days or even weeks after the original exertion has taken place. At my worst, it would only take accidentally standing for a couple of minutes longer than I should have done or walk a couple of metres further than my baseline, and I would go through hell for days afterwards – not only unable to move without pain but unable to tolerate light, sound or even the presence of other people. I’d be hollow with exhaustion and yet plagued by chronic sleep disturbance – and when I did manage to drift off, I’d wake up feeling like I was drowning and couldn’t inhale enough oxygen to breathe. Such fun.
There is no targeted medical intervention for post-exertional malaise. The only method of somewhat preventing and regulating the effects of it is a concept known as pacing – something of a buzzword in the chronic illness community. Pacing is the process of managing your activity within any period of time, resting before you feel tired, and maintaining a state of homeostasis to reduce strain on the body. In essence, it’s one of the most effective ways of managing fatigue and pain-related conditions we have. In reality, it’s an absolute pain in the backside for somebody trying to live their best life as a young adult.
In those early days, I’d naïvely accepted that if I wanted to have any kind of independent life alongside M.E., I’d have to accept the debilitating post-exertional malaise that came with it. If I wanted to go out of the house or do anything out of the ordinary, I’d have to suffer the ‘payback’ and clear at least a few days afterwards to recover from it. Because of this mentality, I was unknowingly falling victim to the ‘boom and bust’ cycle. I’d do as much as I physically could whenever I had the opportunity, and then crash, ending up even more poorly than I had been before. I was up and down so much that I’d never consistently stay on my baseline. For a time, things just seemed to be getting worse and worse.
When I became a wheelchair user, however, things slowly began to change. I was able to leave the house and go out into the world, taking away some of the physical exertion of walking and standing. As expected, these changes significantly reduced the post-exertional malaise that came afterwards. They didn’t remove it completely: for people with chronic illnesses, even the impact of being out in the world and surrounded by external stimuli can drain your battery (and anybody who’s been pushed around in a wheelchair by other people will confirm that a lie-down to recover afterwards would be necessary even for non-chronically ill people…). However, I found that instead of having one good day of over-exertion followed by several poorly days, using a wheelchair helped my ‘boom and bust’ cycle begin to even out. For the first time, I really began to understand the benefits of paying attention to the baseline rather than focussing on enduring the highs and lows.
Using mobility aids meant that I was able to start participating in life in a safer and more sustainable way. That alone would have been enough for me. I was as surprised as anybody at what started to happen next.
The Turning Point
Once I began using a wheelchair and no longer routinely over-exerting myself with standing and walking, I found that I started to feel a bit more resilient. It was as though some of the pressure had been taken off my body, allowing it to regulate itself a little better. I began to feel more…okay. Not necessarily stronger, but much less breakable. I found my real baseline, and using a wheelchair helped me learn to pace myself in a way that made much more sense to me and my lifestyle. It enabled me to live my life again, without feeling like I was completely destroying myself in the process.
Before I carry on, let me emphasise one more time that nobody should ever be inappropriately prescribed physio or exercise therapy, and nobody should ever feel forced or guilt-tripped into trying to ‘up’ their activity levels – you can read more on my thoughts and experiences with that contentious topic in this past piece for HuffPost UK. Physical capabilities are so unique for people with ME/CFS, and no two people experience them the same. At the end of the day, chronically ill individuals know better than anybody what will be realistic for them, and what I’m sharing today is very much my personal experience.
In 2018, four years after I began using mobility aids and my health began to stabilise, I moved into my little flat where I live now. During that first year, with the support of an occupational therapist with specialist knowledge of ME/CFS, I finally felt that the time was right to set a little goal for myself… to simply make it down the stairs to my letterbox a few times a week. Eight months later, I felt comfortable enough with that goal to up the distance a little more, and then later still until a little more again. In 2020, I started to routinely be able to do a lap around my building just as part of my day. And at the beginning of 2021, for the first time, I managed to go for a short walk around where I live. It’s only been doable once so far – I wrote this blog post back in April 2021 and I’m here editing it in September 2021, having not managed it again since – but it’s something that would have seemed completely unthinkable not all that long ago.
If I had still been booming-and-busting my way through existence, there would have been no chance I’d have the quality of life I have now, or have seen the improvement that’s slowly and steadily come. Quite frankly, I wouldn’t have been surprised if I’d just continued to deteriorate. However, using mobility aids helped me to break out of that horrific cycle, establish a baseline, and very slowly and carefully build things up from there. In that way, using a wheelchair has helped me to walk.
The Reason I’m Sharing This Now
So, what made me share this now? Throughout my entire time online, one of the things I’ve been asked about the most is my experience of using mobility aids – why I started using them, how I went about it, how I deal with any stigma or insecurities. I also know, from being in this position myself, that when you’re a young person relying on parents or carers, it can feel incredibly difficult to initiate these sorts of conversations… and that’s before you factor in the complexities of conditions like ME/CFS and symptoms like post-exertional malaise, both of which continue to be rather misunderstood outside of the community.
Over the years, I’ve also spoken with a few different mums of younger girls with ME/CFS. They’ve told me openly that they’ve always been against the idea of a wheelchair, that it’s never been something medical professionals have discussed positively with them, that they have a negative perception of mobility aids… but after seeing stories like mine and those of other chronic illness bloggers, they’re beginning to change their mindset and understand that wheelchairs aren’t inherently a last-resort or some kind of tragedy: they’re a tool that might reduce their children’s pain and help live the life they choose to live. And that, for me, was everything. Not only that these parents were honest enough to acknowledge their past beliefs and open to learning from the lived experiences of others, but that seeing stories on social media and having these chance encounters might just open another avenue of support for young people. I hope it plays a part in normalising an experience that even in 2014 felt more abnormal to me than it should have done, and still continues to be challenging for many people today.
If you’re a young person reading this who’s been considering mobility aids but feels wary of initiating a conversation about it with their parents or carers, I hope this gives you some confidence and a bit of extra oomph to back up your own perceptions. If you think it might be helpful, you’re more than welcome to send this blog post directly to them. If you’re a parent who’s reading this post on behalf of a younger person who’s struggling, I hope this somewhat reframes the idea of mobility aids that our ableist society has caused us all to internalise in the past.
I don’t know what the future holds, or what kind of challenges my chronic illness is going to present me with next. What I do know is that by using mobility aids, I’m much better equipped to handle whatever life throws at me. Unless, of course, Janice the power-chair throws one of her strops… but we’ll save those stories for another time.
Beginning to use a wheelchair was truly one of the best decisions I have ever made, and has changed my life for the better. If you’re at the beginning of your own journey with mobility aids, I hope with everything in me that they might change your life for the better too. You deserve only the best. Never, ever forget that.
Thanks for reading! You can find out more about me on this page, read more about my chronic illness story here, and shop my books and eBooks on this page. Do feel free to say hello over on Instagram too!
Where To Next?
- Becoming A Power-Chair User: FAQs, One Year On (Blog Post)
- Using Mobility Aids When You Have An Invisible Illness (YouTube Video)
- I’m Not Undefeatable, And That’s Okay (HuffPost Piece)
- 5 Tips And Tricks For Choosing The Best Mobility Aids (Blog Post)
- Redefining Success As A Disabled Person (TEDx Talk)