Antifoul

The priority this week for Fear has been redoing the antifoul. This has involved lots of standing up and walking around. The consequence is that I am now in a lot of pain and dealing with severe fatigue.

When I stand up out of my wheelchair, I always get a shocked response. People tend to stare, and I inevitably get the comments of ‘oh your better’, ‘why do you need a wheelchair’ or my personal favorite ‘you must be faking’. I can’t explain the way in which my heart sinks every time I get another comment and the dread of trying to explain.

My condition means that although I am a full-time wheelchair user I am also an ambulatory wheelchair user. This means I can stand and walk around to some degree without the use of my wheelchair. To allow me to do this I often rely on different mobility aids such as my custom orthotics, crutches or a walking stick. When I walk around you can’t really tell there is an awful lot wrong with me, I look ‘normal’.

The reason I predominantly use a wheelchair is because I cannot walk for any significant distance or stand for any length of time. Due to my condition, the ATFL ligaments in my ankles are snapped and I have lots of microfractures throughout my ankle joint. This means my legs rotate inwards when I walk and my ankles unless supported collapse on themselves when weight is applied. This makes walking painful but also very unstable as I can often randomly collapse with no warning. As well as the physical damage to my joints standing up and walking around also exacerbates my other symptoms, increasing my chances of fainting or having a seizure. 

You are probably wondering why I walk then? Well mostly because I’m super stubborn, impatient and fiercely independent. I hate people doing things for me and I get frustrated when needing to ask for help. The main reason though is because my condition is progressive so I will eventually lose the ability to walk. While I am still able to it is important to maintain the muscles in my legs as this will hopefully slow down the deterioration and keep me walking for longer.  

About one-third of wheelchair users in the UK are ambulatory wheelchair users, and there is a massive lack of understanding within society about this. If you’re in a wheelchair you’re expected to not be able to move your legs, and if you do move your legs or stand up it’s often met with prejudice and discrimination. There is a constant fear that if you get ‘caught’ standing up and walking around you will be accused of faking it. I get scared whenever I stand up or walk because I am just waiting for the comments and the questions. I fear what people might say or think.

Project Fear is about more than just circumnavigation the UK and Ireland. Its about doing what scares you no matter what. So I am sharing my truths, in the hopes that it makes others feel less alone. I have a disability whether I am using my wheelchair or not and I do not need to be ashamed of who I am or what my disability is.