Occasionally I develop a problem with my feet, and it can be as small as a blister or a cut but it almost always becomes infected. I can’t walk on it until it heals, and *POOF*: I’m in a wheelchair.

So…what’s that like?

Well obviously it differs from person to person. It’s also pretty impossible to generalise ‘a normal day’ of having an infection for me because: how did it happen? do I have the correct footwear? do I have enough footwear? am I at school? am I at home? am I at University? is it the holidays? am I still growing? have I just had an operation?- the list goes on.

Now is the longest time I’ve gone without using a wheelchair because I’m able to just avoid it since I don’t have school anymore. But so I can paint a picture for you, this is how it was during my last experience when I was 15 and I stayed in that bloody thing for 6 months:

I’d wake up, check my foot, take the bandage off and see what level of infected I was that day. Then I’d crawl into the bathroom – I can’t hop, my balance is non-existent lol. I’d do some next-level spider-man moves to get into the shower without allowing my infected foot to touch any surface, then I’d get washed. Finished, I’d have to carefully dry around the wound and make sure to not damage it further. Next, I’d have to dress my foot.

So I’d take out my medical kit, with all the specific products my feet require. I’d make a perfect bandage, ensuring that there were no creases in the entire thing because creases mean blisters and blisters are not my friend. It’s also important to mention that I don’t have any feeling in my feet, so infections don’t hurt: I recognise when my foot is infected simply by looking at it. So these bandages have to be perfect because the second I put my sock on, I’ve got no idea what’s kicking off down there.

NEXT, I’d have to get changed without accidentally catching the bandage on my clothes, or making it roll up once I put my sock on. Whenever it did catch or roll up, I’d have to start again. Then I’d slide down the stairs on my bum; hopping around the house using my zimmer-frame. (That’s right, I used to have a zimmer-frame, I’m cool.) My dad would bring my wheelchair into the kitchen and after my breakfast, I’d strap in. Once at school he’d push me to my friends and I became their responsibility for the day.

At every point in my life, all of my friends have become friends with me whilst I’m physically independent. So we’ve never started off with them being used to, or knowing what it’s like, for me to be in a wheelchair. Thus being in my wheelchair doesn’t just change my life, it changes the relationships my friends and family have with me.

Thankfully, my pals were mostly brilliant and loved the novelty of pushing me around. But we were children. So there were times when they were accidentally really unsympathetic or insensitive because they just didn’t know what it was like. Plus, they knew me out of the chair, so were used to me doing things for myself. This meant that sometimes they forgot that I wasn’t asking them to go and get me food, or to push me to the bathroom just to be annoying: I was asking because for that period of time, I couldn’t do it for myself.

And they also didn’t realise just how humiliating it felt for me to have to ask them to do these things. Even though I physically felt fine, since I never have any pain, all of a sudden I was overwhelmingly dependent on other people.

I’ve chosen to live a life where most of the time I’m so independent that I don’t seem disabled at all. And that has meant that in those moments when my Spina Bifida catches up with me, and all the actions I take behind closed doors to monitor it come into full view for the rest of the world, it’s just really hard to navigate.

It’s easy to say ‘I’m in a wheelchair, so everyone should be sensitive to that and help me with whatever I need’, but people are people, and you can’t tell them how they should or shouldn’t be. You can ask for help, but you can’t also expect them to fully comprehend something they’ve never had to experience before.

This is a part of my life that very few will ever know the full scope of because ultimately my disability is mine to deal with – not anyone else’s. My family and friends have always done their best to support me when I’m in my wheelchair, and their best is more than enough. And thankfully, being in a wheelchair is not a reality that I have to live in very often – but it does still happen. And even when it does I try and stay as chirpy as I am normally, because why make my frustration worse by spreading it?

After all, I’m one of the lucky ones: at least I always get back out of the chair.