Moving On From A Wheelchair

If you follow me on Instagram, you may have seen over the last year or so that I’ve written a few posts about how the biggest unexpected benefit of using a wheelchair (for me) was that it enabled me to save energy which I could spend on getting physically stronger.

After two and a half years of hard work, getting some things levelled out (and some stuff which is probably just the natural progression of things), my physical ability has changed substantially compared to where I was back then.

I think it’s important to share this and show that (as much as I bloody hate the word), living with long-term conditions really can be a *shudder* journey.

The more I speak with experts, the more I realise that there’s so much basic information about quality of life management stuff that just wasn’t presented in a great way (if at all) to so many people, which leaves them feeling really lost and hopeless.

This post is gonna serve as an intro to a new blog series I’ve been working on with physiotherapist Claire Campbell, who both lives with and specialises in chronic pain.

This series will share the latest evidence-based information about understanding the role of movement and exercise for people living with chronic pain, and give tonnes of information and ways of thinking about things that I know would have been really beneficial to me many years ago.

I’ve definitely noticed that there’s been a shift to a more understanding approach, and I think having the information to understand how and why our bodies and brains may react in certain ways can allow us to become a more informed and active participant in our management.

Like with everything in life, as we learn and we grow up, things change. Our symptoms change, how we manage our day-to-day life changes, and the way we use mobility aids can change too.

I know a lot of people online face backlash when they write about ‘doing better’ (which is such a relative term anyway). I get it, it can be really hard to see people making improvements when you’re still struggling, especially if you haven’t had access to the same level of care and support. But I think this can lead to a culture where people feel scared to be honest about these things, and that doesn’t really help anyone.

Granted, a lot of times people may attribute the very natural progression of their conditions to pseudo-science, which can be dangerous (and I promise I won ‘t be doing here).

But, compared to where I was a couple of years ago, I am in a better place. My quality of life is substantially higher.  And I would say that being able to use a wheelchair played a huge role in that.

Before I get into the meat of this post, I want to make some disclaimers:

Firstly, I know that I’m extremely privileged to have had access to a wheelchair and regular sessions with a Personal Trainer. I know without her expertise, care, and adaptiveness, I’d not be in the position that I’m in today.

Secondly, I’m not saying that I know the secret to being ‘cured’, because I’m certainly not (saying that…or cured).

I’m not claiming that everyone should do what I do, and that anyone who has not made progress is in any way failing or wants to be having a hard time. Again, I know so many people do not have access to the care and support they need. I’m only writing about my personal experiences here.

There are some conditions where moving and exercise can be really detrimental, and I’d never say that people should do anything that’s unsafe for them.

By aiming to use a chair less, I’m in no way saying that a wheelchair is a bad thing. I’ve always viewed it as a *tool* that can help as and when I need it.

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I’ve always known that keeping as strong and as mobile as possible was the number one thing that I needed to do for my joints, but learning how to balance this once I developed fatigue was a real challenge.

On top of everything else that was going on at the time, I think it’s pretty fair to say that I was deconditioned and scared.

These are totally understandable things, and having spoken to chronic pain experts for resources I’m working on, pretty damn common.

If you experience decline (and see hundreds of people in Facebook groups telling you decline is inevitable – even when this isn’t the case) and don’t receive care or support that proves anything otherwise, it’s easy to feel at a total loss, upset about your future, and unsure of what to do.

It can be overwhelming to know how or where to get started. This is a really common thing for people experiencing chronic pain – our bodies and our brains become extra sensitive and protective.

The thing is, those feelings often develop for a really important reason. But there’s a point where that awareness can go too far, and the habits and self-protection mechanisms that we learn are no longer helpful (and in some cases can be actively harmful).

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I’d started with a personal trainer quite a while before getting a chair because I wanted to find a way to work on getting stronger. I didn’t really make any progress because I was unable to keep up with regular sessions due to pain, fatigue, and the knock-on effect from any ‘life’ activity’ I was pushing myself to do at the time.

Using a chair not only opened up more opportunities to just go out into the world, it meant that I was able to save a huge amount of pain and energy (my knees have always been my biggest issue) without the significant level of knock back I was experiencing before. And, for the first time in a long time, was able to dedicate time (almost) every single week to building things up.

This was extremely important to me, as I was really concerned about becoming more deconditioned.

We started small. Like, really small. Our focus has always been on performance, but done in a way that didn’t push me too far too quickly. This manifested in two main ways:

• What movements do I need to be able to do to get through my day in a sustainable and more comfortable way?
• How can I learn to actually feel safe doing these movements?

Honestly, I’d say the mental side has been a good 50% of this. Over twenty years of worsening pain, and being scared of injuries (for very good reason) or causing myself (or others causing) more harm made me avoidant.

Claire very kindly read this post before publication, and she made a great point that I wanted to share:

“Often people with chronic pain will be safe to move and report that the main problem is not being able to do certain things consistently. It is common to believe that the pain they experience is damage occurring to their bodies, which leads to a lot of fear.

From the research that has been done, it is understood that the nervous system can be on high alert and can be very sensitive to any perceived threat. This can be experienced as severe pain or fatigue, but not necessarily related to injury.

I know that in the case of people with hEDS who are pushing past their capabilities they may be causing injury though! Hurt doesn’t always mean harm, but it can sometimes. Knowing the difference takes a lot of awareness, experimenting and practice.”

In our series, we’ll be talking about this in a lot more detail – there’s also a section on ‘expected’ body pushback when you start giving it new things to do, and I think that’s really important to understand.

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We repeated the same movements for months (some I’m still doing even now) with subtle changes, having to adapt to what I was physically able to do on any given day.

There were, and still are, times when my pain or fatigue was too bad and I couldn’t do anything for periods of time. Or I had a work commitment that meant I had no energy spare.

But one of the most important lessons that I learned was that just because I had to stop and it felt like I was going backwards, I wasn’t.

That physical work I’d done was still there, and when I was able to get back to it, even though we may need to start slowly and take a few steps back, I always came back to the point where I’d worked up to. It was a plateau. It hadn’t all been for nothing.

Even just one session a week that I planned for and nothing else, gave me a starting point to build up from, and over the next couple of years it all added up to make a huge difference.

Just like how most diet advice is pretty boring and unsexy, it’s the same with physical rehab. It’s slow, plodding dedication to just show up and keep trying.

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As I was doing this, I was learning how to rest and pace properly, and gave my body the time and care it needed to recover without pushing myself too far so that I would crash. Getting a couple of deficiencies and my thyroid levels balanced out about a year ago also made a drastic impact on my quality of life.

Whilst I still do experience fatigue, the severity of which comes in waves, it is not as debilitating as it was when I started with all of this.

It’s important to remember that there are so many small things (including just…things change…) that play a role in how we feel and how our health is, that we can ‘t really attribute it to any single thing.

Around this time, I started really making an effort to check in with my PT about my progress. It can be really hard to see when you’re in it and are having ups and downs. But comparing what we were doing then to where I started made me really proud, and honestly felt like a massive shock.

I’d gone from barely being able to stand up three times from the sofa with a chair in front of me, to doing regular ‘stair practice’ and ‘walking practice’ and seeing improvements in my ability to get through the day.

The funny thing is, I didn’t really have a specific goal in mind with all of this. I just wanted to feel more secure in my body. I didn’t really think about specific things I wanted to be able to do. I don’ t think at the beginning I would have been in a place to set goals or to believe that I could make the progress that I have made – it can be really hard to see past how we’re feeling at any given time. But secretly my PT did, and it’s something we talk about regularly now.

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Every new movement and every new activity required learning both physically and mentally how to do it.

We broke things down to its smallest parts, and built them up, making them feel second nature again.

This was just as important mentally as it was physically. In some cases it was like tricking my brain and going through the motions, or even breaking it down even more, so I could learn that the component parts were safe to do.

This is something I’ve also written about before on Instagram, and took into my ‘real life ‘. I constantly talk to myself when I feel scared, reassuring myself that these were things I’d practiced.

I learned to recognise that even when I did hurt myself, more often than not, I was ok. A bad pain one day didn’t mean it would last forever, a bad day doesn’t equal a flare up.

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This year, I started to make some changes that I didn’t think I was ready for, but it turns out I was. So much about this experience has been small, safe, experimentation to help me challenge my limits.

For a review I was sent a pair of crutches that were actually comfortable and was able to start going for tiny walks outside my flat with them.

Then a couple of months ago, I received a loan of a rollator (also for a review) and honestly, that was a huge shift for me.

I started really slowly, and have been building up to using these for ‘walking practice’ or as I now call it ‘walking’ outside my flat, and short trips like to the cinema or for a meal (when going by car, just before lockdown).

I was already getting to a point where the chair felt like it only needed to be used for long-distances, extremely crowded places, or events that were particularly tiring. I had to be stopped from getting ahead of myself because I got excited and wanted to keep trying new things. As with everything, it’s about taking things one slow step at a time.

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Over the last few weeks in lockdown, and whilst working on the exercise resources, I’ve been doing a lot of reflection on movement, exercise, and the progress I’ve made.

I feel like it ‘s important to be honest about where I am with mobility and mobility aids, because I spent a lot of time trying to destigamtise the use of them and talking about the benefits they brought to my life.

But I think it ‘s just as important to be realistic about how, why and when we may need to use them.

Just because you may need a particular mobility aid for a period of time, it doesn’t mean that you will need it for the same reason in two years time. And vice versa.

I know that hard work and maintenance is required for the rest of my life to help keep me as strong as stable as I can be. I know when I was younger I was hoping for some magic bullet, but in reality, a lot of long-term conditions are pretty dependent on self-management. I think what’s really upsetting is that decline isn’t actually inevitable for a lot of them, it’s once again the lack of appropriate care and support.

I was in a pretty bad state and it took years to get to that point, so we can’t just expect improvements to happen overnight or even in weeks/months. Again, I know I’ve been so lucky to have support for this and I will never forget that for a moment.

There are still times when I just can’t do things and I need to take some time in bed. I still experience pain and fatigue every day. That’s just the nature of things. But the most important thing for me has been that my quality of life has improved dramatically, and I’m not only getting stronger, but I’m learning to feel safer in my body.

This has had knock-on effects for the rest of my life. I’m able to work more, spend less time online, become more self-sufficient, and overall I feel like I’m getting my life back.

I firmly believe that using a wheelchair gave me a chance to kickstart all of this in a way I wouldn’t have been able to without it. And I will forever be grateful for that. I just don’t feel like I’ll be needing it as much in my life anymore.