Around two weeks ago it was International Wheelchair Day and this got me thinking about my relationship with my own wheelchair and the journey we’ve been on together. So, I decided to write a little something about my new identity as part-time (ambulatory if you want to be posh) wheelchair user and how I have grown to love my once-loathed Hot Wheels. Full disclosure: this post contains zero cat content.
The journey towards acceptance of my limitations has not been smooth or easy. The first time I used a wheelchair was when my husband and I were flying home from Italy for the final time. I knew that I would find the travelling absolutely exhausting, so was advised by friends and family to make use of the special assistance through the airport, to avoid over-exerted and the subsequent payback that comes with it. To say that I was not keen on the idea would be an understatement. I was so embarrassed at the thought of someone seeing me in a wheelchair, which really doesn’t sound good when I say it out loud. It’s not that I had ever or will ever think of being in a wheelchair as something to be embarrassed about, it was more that I was still in denial about my condition and hadn’t yet made peace with what my body was no longer capable of. How had I gotten here? How could I have gone from fit and active to wheelchair-bound in the space of a year or two? And how could I really need a wheelchair when I didn’t even have a ‘serious’ illness? People would think I was faking, or that I was doing it for attention. Everyone in the airport would stare at me, knowing that I didn’t really need that wheelchair.
As it happens, no one gave a toss except me and it really did make the whole process much more manageable.
A few months after moving home, we got our own wheelchair and I began to use it more regularly. I expected that over time I would become less uncomfortable, but that wasn’t quite the case. Whenever I was using my chair, I found myself making jokes about it - or myself - a lot. I convinced myself at the time that I was doing it to make everyone around me more comfortable. I know it wasn’t easy for some people to see me in the chair initially, so I found humour to be a helpful defence mechanism for putting everyone at their ease. I would shout “it’s a miracle!” whenever I stood up out of the chair, or quote Brian Potter from Phoenix Nights. It soon became apparent, however, that the only person truly uncomfortable with it was me. I was making these stupid jokes for my own benefit.
So why was I so uncomfortable? When I confessed to my husband that I felt everyone would question whether I really needed the chair, he asked me a very simple question: “when have you, or anyone you know for that matter, EVER questioned someone’s need for a wheelchair?” Well of course I bloody hadn’t, and I don’t know anyone who would, so why did I think everyone around me would suddenly turn into the DWP and start asking me to prove myself. It was utterly nonsensical.
As I continued to ruminate on this (and believe you me, I have a lot of time on my hands these days so I can ruminate with the best of them), I started to question whether my discomfort with my wheelchair was part of some wider social stigma or prejudice that I had unknowingly internalised? Did I view having a disability or using a mobility aid as something shameful? Absolutely not. So it was difficult for me to understand why exactly I was now judging myself for needing a chair. I knew I felt embarrassed about it, but I couldn’t quite get to the real root of the issue. Why did any outing leave me a sweating, anxious, apologetic wreck? Whenever I was out in the chair, I could physically feel myself shrinking into the smallest version of myself, in the hopes of not being seen or noticed.
I mentioned this to my Occupational Therapist during one of her visits and she told me that one of the hardest things for people with M.E to do is accept their condition. To go from living a fit, active and busy lifestyle to being housebound is very hard to swallow. To do so thanks to an illness so heavily entrenched in stigma and disbelief is even harder. Imagine how devastating it is to have your life brought to a crashing halt by a disease that can’t be treated. Imagine how much more devastating it is that many still hold the belief that your disease isn’t even real. When faced with all of this it can be hard not to doubt yourself at times, not to question if you are simply not doing enough to get well. Maybe if you just pushed yourself, you’d start to improve? Maybe it is all in your head after all.
It would appear that the only prejudice I had internalised was toward my own bloody condition.
After much soul searching, I realised that the reason I worried that people would think I didn’t really need my chair because I still couldn’t quite accept that I needed my chair. I had been viewing it as a concession, as if by relying on my wheelchair was somehow ‘giving in’. It was my mum who pointed out that the chair was simply the difference between doing something or staying in the house, and it was this that helped me begin to see my wheelchair not as something I was surrendering to, but an aid which actually empowers me to take part in activities that would otherwise be impossible or unachievable.
Since becoming an ambulatory wheelchair-user I have connected with others in my position via social media and have learned a lot about the ableist language and attitudes that are still extremely prevalent today, and just how damaging these can be. Earlier I used the term “wheelchair bound”, but I have come to realise that language like this is all part of the problem. I am not “bound to” my chair, my chair is my freedom. I am limited at the moment, so my chair is holding up the fort me. It is doing the work that my body can’t manage just now. Although I continue to hope that my limitations are not permanent, I am learning to make peace with them in all of their various forms.
And so, to my little Hot Wheels who I have mistreated and resented for far too long, I would like to offer an apology. Not only have you taught me to worry less about what other people think, you’ve enabled me to do things that would have been impossible without you. You helped me get to Oslo to watch my brother get married, you took me back to Milan to see my pals, you made it possible for me to stroll (well, roll) along the seaside. You’ve taught me a lot about acceptance and self-love, and to give significantly less f**ks about other people’s opinions of my illness.
Lastly, you’ve also helped me get the best parking and queue jump like a boss. You’re the best.
As some of you may know I recently travelled to Oslo to celebrate my brother’s wedding. It was a beautiful day and a great time was had by all. When my brother and his girlfriend initially announced their plans, I was excited – I had always wanted to go to Oslo and I couldn’t wait to celebrate their big day with them. With that excitement however, also came anxiety. How would I manage a big journey like this? How could I enjoy myself but not make myself ill? If you have a chronic illness like M.E then chances are you know very well that this feeling generally comes before any event, large or small. How will you pace it? How bad will the payback be? Is it even worth it? Of course there was no way on earth I would miss my own brother’s wedding, so here’s how we made it as M.E-friendly as possible.
1. Prep like a boss
This trip to Oslo was my first big journey since I flew back from Milan in February and I experienced a pretty big crash after that. I was determined that wouldn’t happen again, I wanted to be on my best form for the wedding day. My best advice to you, if you either have M.E or are travelling with someone who does, is to start organising and packing as early as you can. Write a list a week or two before of the things you’ll need to take with you and start to slowly pack what you can in small bursts to avoid over exerting yourself. Perhaps most importantly though, lean on those around you - even if packing seems like a low energy activity, it is still draining your battery so if someone else can do it for you, let them. In the week leading up to the trip I tried to do as little as humanly possible to conserve my energy for the journey, and I let other people pack my bags for me. Just maybe don’t tell airport security that…
If like me your mother happens to be a nurse at your GP and therefore acts as your medical secretary, then chances are that you’re already super organised with your medication. If not, then check your prescription(s) ahead of time to ensure you don’t run out half way through your trip. My family and my husband had to help me to remember to keep on top of my pain meds every 4 hours. I usually try to take the pain meds only when things get unbearable because they’re pretty strong and can sometimes make me feel a bit out of it, but I think it’s important when you’re exerting yourself more than usual to be extra vigilant at staying on top of your pain levels to avoid a crash. This really helped to make the whole trip more manageable and enjoyable. Turns out everything is easier to cope with when you’re high as a kite. (Joking, mum!)
2. Me and my Hot Wheels
As I would be travelling with my wheelchair, we made sure to book airport assistance for both journeys. I’d recommend this even if you have M.E but don’t regularly use a wheelchair, simply because you will save so much energy by avoiding the long walk to your gate and standing in long queues at security. Airports: another thing I never thought of as a particularly ‘athletic’ activity until now.
*Fun fact: evidence shows that 97% of M.E patients have some form of Orthostatic Intolerance. Which means that standing upright in one position for too long can lead to dizziness, weakness and nausea, which is why standing up in a queue for a long time can be tricky. I know what you’re thinking – is there no end to this rollercoaster of fun?!*
The assistance at Manchester wasn’t brilliant but at different airports I’ve been allowed to bypass queues and go to a separate security gate, which takes so much of the stress (and noise) out of the whole process (plus you feel like an absolute baller flippin’ the V’s to all the regular chumps as you breeze on past to the front of the queue. Who’s laughing now, you healthy losers!) It’s really easy to add assistance to your booking online and comes at no extra cost.
We also carefully researched the journey from the airport to our apartment to make sure it would be manageable (something to consider carefully before booking accommodation) and researched how accessible the transport would be. Thankfully, most of the public transport in Oslo was wheelchair friendly, so I didn't have to get out and walk too many times, thus managing to avoid the looks of awe on people's faces when they think they are witnessing a miracle.
3. My Travel Non-Negotiables
We all know how noisy airports can be, so this was an element of the trip I was dreading, as well as all the germs flying around in the air con on the plane. Think very carefully about what you will need to make your journey as comfortable as possible before you travel. I also sought advice from my Occupational Therapist at my M.E clinic who had some useful advice for me, so make sure to utilise all the help you have available to you and ask other people what has worked for them. In my hand luggage I packed the following:
Just knowing that I had my emergency stash on hand made me feel more comfortable throughout the trip, and I although I had a pretty big crash after coming home and subsequently spent a week in bed, I have yet to contract an air con induced cold, so good work Vicks.
4. Food, glorious food
I won’t go on too much about food because it is my greatest love in this life and I could wax lyrical about it all day, and also because I’ve had such a roller coaster journey in trying out different diets to help manage my symptoms that it deserves a whole blog post of its own. I have spoken to so many people with M.E online who are able to manage (albeit in small ways) some of their symptoms by following a very careful diet. I was also advised by my consultant that eating little and often, rather than eating three large meals a day was more suitable for people with M.E because our digestive systems don’t quite pull their weight, the lazy idiots. With all of this in mind I made sure to pack snacks and lots of them, and to seek out a shop on arrival so that I could buy my staples – gluten free bread, non dairy milk and plenty of fruit. We all know that one of the best parts of going on holiday is committing yourself to happily gaining about half a stone as you allow yourself some time off from eating sensibly. Alas, not this time. I’ve found that the slightest change to my diet can affect my symptoms in a big way; making me even more fatigued or causing terrible stomach cramps, so it’s important that you try to maintain your regular diet and try to avoid throwing your regimen out of the window. Thankfully I’ve never yet had a bad reaction to gin so hurrah for small mercies!
If all of that sounds really bloody boring and you want to just let your hair down for a few days then make sure you take your supplements, kids! My liver doesn’t function as well as it should so I take Milk Thistle to help flush it out (also helpful in enjoying the above-mentioned gin). I rarely eat meat so I take L-Carnitine to supplement my diet and I take vitamin B, Q10, L-Glutamine and loads of peppermint tea to give my digestive system a much needed kick up the arse. So if you want to go mad and eat a cheeseboard or have cocktail (I strongly believe that a little bit of indulgence does you good sometimes), then I suggest taking the relevant supplements along with you because it helps minimise the inevitable payback. If any of them are in powder form I recommend getting a letter from your doctor to take along with you to avoid any embarrassing run-ins with sniffer dogs.
5. Pace yo self
Those of you that have M.E or other, similar chronic illnesses know that one of the most important ways in managing your energy and symptoms is pacing. While this is undoubtedly helpful, it is also one of the hardest things to master. When I was first diagnosed I was told to always bear in mind that whatever I think or feel like I can do, I should cut it down by half and then half again. This is not so easy to do when you’re beholden to a travel schedule, so the best advice I can offer here is to just shut up, literally. I never realised how much energy is taken up by talking until I got sick! At several points throughout our stay in Oslo I put some calming music on my big old headphones and just shut myself off from what was going on around me. If you’re a worrier like me and are anxious about coming across as rude or antisocial, just explain your reasons for this and people will understand (and if they don’t then why the hell are you going on holiday with such insensitive gobshites?) Taking little breaks from joining in the conversation and cutting yourself off from too much sensory stimuli can really help you to save up little pockets of energy along the way.
Learning to live within your energy limits is so difficult because it means leaving before you’re ready or calling it a day when you’re having fun and just want to stay out for longer. This is crucial though to avoid crashing as the more crashes your body has the harder your recovery will be. Before flying I had my doubts about taking the wheelchair with us as I still struggle a little with feelings of guilt at people having to push me around or adapt their plans to suit me. I’m also not yet entirely comfortable using it out in busy spaces, I’m still getting used to it. My family wanted to do some sightseeing whilst there and I had resigned myself to not being able to join in, but thanks to their insistence that I bring the chair I managed to see some of the city, enjoy the sunshine and go out for lunch - something I haven’t been able to do in a very long time!
I still struggle to walk for more than about 15 minutes, anything exceeding that always brings on a big flare up of symptoms. Had I been on foot in Oslo I would have missed out on so much. I used to see my wheelchair as a concession or a mark of defeat, but now I’m learning to see it as a tool to help me pace my physical activity, so I can actually get out and enjoy life a little more.
Next step now is to accessorise it for different occasions. Any and all Halloween suggestions welcome, though preferably cat related. Obviously.
Thank you so much for taking the time to read my blog. If any other chronically ill cool dudes like myself are reading and want to add to my list of suggestions on how to make travelling more manageable, I’d love to hear from you. I’m still getting to grips with it all and always happy to listen and learn from other’s experiences. I also just want to clarify that many people with M.E would not even be able to contemplate going on holiday, especially not abroad. It is not at all possible for them and would make them severely ill. This advice only relates to people with ‘mild to moderate’ M.E like mine. A lot of it could be adapted to work for a short train or car journey, as I’m a firm believer that even a short and relatively close by change of scenery does the soul good (as long as it’s not going to make your illness worse) and that there are plenty of ways that travel can be managed to make it more bearable for people with chronic illnesses. I have written to Manchester Airport to make some suggestions about how they could make improve the service they offer for people in wheelchairs and people with nervous system disfunction. I’ll update you on what comes of it.
As ever, onwards and upwards!