How using a wheelchair gave me the freedom to be active

For Emily, being active had always been at the bottom of her to-do list. Living with ME, Chronic Fatigue Syndrome and POTS meant she had little energy and had to reserve what she did have for vital everyday tasks. She shares how using a wheelchair has given her the freedom to become more active.

My story

As a child I was sporty, but at the age of 12 I was diagnosed with ME/Chronic Fatigue Syndrome. My main symptom is fatigue, but I also suffer from headaches, short term memory loss and find it hard to concentrate for long periods.

When I got ill my activity levels dropped. Throughout secondary school I had to prioritise what I would do using my limited energy. Schoolwork had to be top of the list, so all my energy was saved up for when I was in school or doing homework.

At 24 I got a second diagnosis. I was told I also have Postural orthostatic tachycardia syndrome (POTS). My POTS basically means that it takes me five times the amount of energy to do something whilst standing up.

Being active

My conditions mean that it is very easy for me to overdo it when it comes to exercise. I may not realise at the time that I am overdoing it. But the next day I will suffer with a lot of pain and being unable to move

Over the years I have tried lots of different forms of exercise to find the right thing for me. I went through a stage when my health got a lot better and I built up my strength going to the gym and swimming. But then my health took a dip again and I couldn’t keep these things up.

I go through a lot of ups and down with what I can do when it comes to exercise. This has meant I have had to keep starting over again, building up my stamina.

Changing my approach

I had always been wary of wheelchair sports. There was  a clear image in my head of wheelchair athletes who were paralysed at the waist and had big strong arms. I didn’t fit that mould, my condition affected me differently and I am not very strong.

Recently, I started using my wheelchair more and have found it’s opened up the world to me. I have more energy to use on other things as I am not using it all being stood up.

The wheelchair has opened active doors to me too. I joined Liberate dance, a wheelchair dance class, as well as a wheelchair martial arts group. These are activities I wouldn’t have considered before, but using my wheelchair to be active has meant I have a lot more energy for the activity itself.

Being able to be active again has been great. It feels good to be able to physically move through space without feeling dizzy or being in pain.

Feeling a part of something

Liberate dance has opened my eyes to what wheelchair sports look like. I have met more people like me, who only use a wheelchair sometimes. We all have different conditions, but we all equally have something we are dealing with. There is a sense of unity. For the first time I wasn’t the only different one. I didn’t stick out.

Adapting the classes

Both Liberate and the martial arts I do, I can adapt to suit me. I have a van with a little sort of bed in the back. When I go to dance classes I pop out halfway through and have a lie down before joining the class again.

I have been joining the martial arts class virtually during lockdown. I had wanted to join the class for a while as I thought it looked really cool. But it was too far for me to get to, especially when I didn’t know how much of the class I could manage. Joining virtually allowed me try it out and see what I can do. The class is to music and I have found that I can do every other song.