At the weekend whilst out on a wheel for some fresh air (also known as needing a break from near constant CBeebies), I bumped into someone from church. They wanted to know about my wheelchair use and asked me, very politely: can you walk? And it was this question that got me thinking about that question which many wheelchair users are asked, either directly or indirectly: why do you use a wheelchair if you can walk?
Most of the time this question comes from adults. But when it comes to inquisitive children, they amusingly stare. They either stare at me or at my wheels, or seemingly go from staring from one to the other, trying to work out what on Earth I’m doing to not have to walk.
Depending on whether the questioner is an adult or a child depends on how I answer that question, in however form it’s given: “why do you use a wheelchair?”
I personally don’t sign up to the “it’s none of their business” view. I know many people do but my thinking is it’s my responsibility to help teach others. Obviously it helps I’m a teacher by trade and a chronic Over-Sharer and therefore don’t mind the idea of speaking to completely random people about my health. But I feel that people need to understand that disabled people do not look a certain way, act a certain way or even speak in a certain way. A wheelchair user is perfectly likely to be able to stand and walk as they are to use their wheels. Wheelchairs are not just for the paralysed or elderly.
So how do I explain why I use a wheelchair when technically my legs work?
What I say is that the way I understand my ME is that the cells that power every part of my body, just don’t quite work properly. The mitochondria, the powerhouse of each cell, whose job it is to turn food energy into energy that can be used for activity, don’t work properly. Energy goes into the body perfectly well in the form of food and drink but the mitochondria seemingly can’t turn this into useable energy by the body.
Note: I’m not a scientist by any stretch of the imagination, nor am I a health professional so please do not use anything I say to be fact. I simply write about my opinions, my experiences and my understanding of what I’ve read from actual scientists.
I go on to explain that when we live with ME we simply don’t have as much useable energy as others. Therefore we have to very strictly ration the energy we do have into manageable portions. Everyone with ME has a different set of circumstances which help govern their rationing protocols, or rather how they choose to “spend” their limited energy.
For me, my husband, daughter and business as a piano teacher (alongside my blog obviously) are my expenditures. These are the things which make me happy therefore all my energy goes on these. Pre-M.E. one of my main hobbies was walking long distances or at least 2-3 miles a day. Clearly my energy levels do not stretch to this, nor do they even stretch to making it round a supermarket, standing still in a queue and then carrying the shopping to the car.
So, some way of conserving energy is necessary. I started my ME journey with a rollator to help me get around. But no matter how many times I sat on its inbuilt seat for a rest, my energy levels didn’t magically increase. I attempted a manual wheelchair but again the energy required to self-propel my substantial weight was too much. So powerchair, or electric wheelchair it is.
I explain, to anyone that is still listening at this point, that my powerchair allows me to live a relatively normal life within the constraints of an energy-limited disease like ME. It allows me to get the fresh air that is so important for my mental health but most importantly it provides me the independence I desperately need.
My powerchair allows me to live a life that makes me happy and works for my little family. It allows me to take my daughter out to the park. It allows me to meet friends and family out and about.
Deciding to use a powerchair has been the best decision I’ve made in my ME journey and it’s one I will not ever regret.
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