I’ve noticed a lot of discussion within Facebook groups recently, around the topic of walking versus the use of a wheelchair. Many disabled people gradually lose the ability to walk over a period of time. Often it occurs in stages: from independent mobility to the need for walking sticks, then a frame and finally a wheelchair.
I appreciate that for the individuals affected, it is an incredibly difficult decision to make. Do I continue to walk for as long as possible, despite the struggle and restraints? Or, do I resign myself to the confines of a wheelchair?
Confinement or Freedom
I have noticed, from comments on social media, that this is how some view wheelchairs: objects of confinement and restriction. On the contrary, I see my wheelchair as an essential mobility aid, removing the limitations I faced when walking for only short durations. The powered chair I now use offers me freedom and independence.
Obviously, your condition and individual circumstances determine whether or not you have the option to continue walking. Personally, I never had a choice. I have Ullrich congenital muscular dystrophy and lost the ability to walk quite abruptly at the age of 10. Not that I could walk very well or very far up to that point.
Nevertheless, the choice was taken from me. I had reached a stage where I literally couldn’t support my own weight. Grit and determination played no part. And so, I went from walking minimal distances whilst wearing leg splints, to using a manual wheelchair that I couldn’t self-propel due to a lack of strength and joint contractures. Sticks and frames were never of any use to me.
Roll with the punches
It was a difficult transition, of course. But not totally unexpected. As a child, I was offered little assurance of how my condition would progress. Doctors simply didn’t know. They couldn’t tell me if I would maintain my ability to walk or not. It was a case of, wait and see; roll with the punches. So that’s what I did.
To be honest, I was to a large extent relieved to be using a wheelchair, despite the fact I was dependant on others to manoeuvre me around. Even just a few small steps was a huge feat and physically laborious. That in itself was disabling me.
Committing to a wheelchair full time meant that I was free to roam with my peers. Kids at school used to squabble over whose turn it was to push me around. I was no longer exhausted, battling to stay on my feet or falling over and injuring myself. Being non-ambulant, I no longer had to wear those unsightly leg splints which pleased me no end!
Life-Changing Moment
I had recently started middle school and, within a matter of a few weeks, I found myself completely unable to weight-bear. However, less than twelve months later, I was fortunate enough to benefit from my first powered wheelchair. I can’t emphasise enough how much of a difference this made to my life. I could zip around at break times with friends, I could take myself wherever I wanted to go without the need for assistance, and I could venture into the local countryside. I was no longer confined!
It’s been eighteen years since I took my last footstep. And, I can honestly say I don’t miss walking. Naturally, I wish I could stand, walk and run ‘normally’. But I would never trade my wheelchair for my old leg splints, the bumps and bruises from falling so often, and the constant exertion to achieve a few small steps.
Thank you to the lovely Carrie Aimes for sharing her story. For more from Carrie you can visit and follow her on:
Website: Life on the slow lane
Twitter: @claimesuk
Have you had a similar experience?
How did you cope with making the decision?
Please share your story in the comments below!
5 Responses
Thank you for sharing this. I have Bethlem myopathy, and I’m just reaching the stage where I realize that using a wheelchair in certain situations would be so much easier and safer and would actually allow me to enjoy different events much more without having to worry about getting tired or finding somewhere to sit down to rest.
I’m mobile yet I’ve got into reading Carrie’s blog LIFE ON THE SLOW LANE, which has really opened my eyes. These blogs about wheelchair use should be more widely blogged so “walking” people will understand the hassles that wheelchair-bound folk face, and also make them appreciate that they can bloody WALK. I live in France and everywhere – it seems – public places are wheelchair-friendly. Most swimming pools have hoists into the water. And there are ramps everywhere. And in my experience French people (with all their faults!) NEVER park in disabled parking spots. Maybe I am wrong, but I do feel that France caters much more to disabled folk than England.
I have been diagnosed with stiff person syndrome amongst other things but in the course of 3 months I habe gone from free but difficult walking to recently two walking sticks and due to the tiredness and subsequent spasms I go through I am now contemplating a wheelchair particularly to avoid fails and fatigue ( to give you an idea after 8km walk I sleep in between cramps and spasms for between 14 and 20 hours.
My concern with a chair is I have had a faulty shoulder replacement 3 years ago and I want to be self sufficient.
Shod I stay on sticks and take the risks or go for a chair or even an electric scooter. All advice truly appreciate
Hi Andy
Thanks for getting in touch and sharing your story. I can imagine it’s a difficult time and a big decision for you to make. Ultimately it is down to your own choice and what you feel is the best option for you. However, I think safety is very important and if you are prone to falls, spasms and get fatigued after walking, I’d probably say a wheelchair or scooter would be the best decision. You won’t be risking injuring yourself or have to struggle with fatigue management. There are lots of different wheelchair options and I’m sure you will find one that will work best for you and still allow you to be self-sufficient. Do you have a specialist/consultant, OT, doctor or social worker that can help you get the ball rolling and possibly be assessed for a wheelchair?
All the best and let me know how you get on? 🙂
Hi, I am 28 and have two kids 5 and 10 years old. After 2 years of physical struggle I was diagnosed with Fibronyalgia and CFS, there are days when I can do everything and I feel young and even go out with kids. but there are weeks when I am in the bed for 20h per day, just walking in the house, holding to anything steady I can find. It hurts so much, every step, I cry because of pain and becasue painkillers dont work. It hurts when I cant go out with kids, they want to go to the forest, park, or zoo, and I know that it will be torture, I am not going with them. I am thinking about getting whellchair, but I dont need it all the time, how it will look if once I am dropping kids to school on the wheelchair and the next day I am walking. I crunch my teeth and walk, and all I am thinking how many steps left until I will sit or lay down. My husband doesnt get that, he doesnt understand how pain can stop me from walking, that doesnt help either. How do I fight with my own conciousness about it. I know it would be so much easier to go shopping with kids on the wheelchair, but how do I do that, how do I start.