The other week someone asked me what a normal day with my disability is like, and I laughed.

Like many, this person was looking for me to recount a complicated series of events that measure up to the stereotype of an arduous, pitiful day of living with Spina Bifida. Only, life isn’t like that, and my answer to this strangely-worded question will always be the same: it depends on the day. I will say however, that by having my first blister in 3 years a couple of weeks ago, and living more on my own than I ever have before, I’ve started to think about and recognise the number of things I do, and things I know how to do, which simply don’t go through the minds of many of my peers.

I look at my feet religiously every morning and every night: I check for tiny little differences from what it looked like the last time I looked, and I press on my scar tissue to feel if it’s weakening because god knows it can decide to weaken at any given time, for absolutely no reason. With my blister – which I thought had healed, but it hasn’t completely – I have to constantly apply this gel my doctor gave me which dehydrates the wound to constrict the blood vessels and hopefully heal the blister more quickly. Just a few days ago some old blood from when the blister had been active came out whilst I had my shoe on, and as always, I only noticed this once I took my shoe off and saw the blood on my sock. I was at my friend’s house at the time and asked her for some antiseptic, she said she didn’t have any, I made her laugh by saying ‘that’s privilege’, and then I asked her to boil some water and put some salt in it because I know that that’s the next best thing to sanitise a wound. Then amongst all of the practical things I do, at the minute I’m having to weigh up which social events I can go to, whilst also factoring in the amount of walking I’ll need to do for lectures, whilst also wanting to continue to have fun with my friends like I was before my foot decided to be a dick.

And regardless of whether I have a problem or not, there are always days when I put my shoes on and my legs feel weak: I’m tired, I trip more often, I’m self-conscious of the possibly exacerbated limp to my walk. If the pair of shoes I’m wearing are new, I can tell that all of the structure is in the right place because as I walk my feet try their very best to revert back to their naturally deformed position, but the hard leather pushes them to where they should be, making walking both easier and stiffer than before.

I know how to make a perfectly flat bandage for any tricky angle or curve on my feet, and how to spot it when an infection is tracking towards my ankle. I could tell you exactly the type of medication I need if I get an infection, and I could tell you a million tales of when I’ve had to take it. In recent years, I’ve learnt that Spina Bifida also means that I can occasionally experience bladder retention when I’ve had too much to drink, meaning that I temporarily lose the ability to empty my bladder on my own and I have to catheterise myself before the pain starts and I have to go to A&E. It’s not a nice thing to have to do, and it hurts the next day.

Knowing all of these things (and more) is second nature to me because I have to know them, and I’ve always been taught to acknowledge that it could be so much worse. But by just getting on with it, I’m not sure that I ever take the time to consider how tiring it can be to have all of this in my head and nobody to acknowledge that I’m having to think about it.

When I was a little girl, I didn’t know what was going on. I didn’t know or care that I walked funny or that my feet were different to everyone else’s. I started to clock it when I was having operations; when there were times that nurses came to the house every day to dress my foot, and I missed out on things my friends could do because I was in a wheelchair. Then I became a teenager, and I got angry about it, or I ignored it, and I didn’t look after my feet the way I could’ve. Now we’re here, I’m an adult, and I know how to do it better than anyone else. But the one thing – my biggest crutch – that I don’t have as much as I did when I was younger, is the ability to just look at my parents when I’m weary from it all and see that they know. So I miss that look sometimes.

I had an extremely happy childhood, a wonderful adolescence, and so far so good when it comes to adulthood. But every now and then I step away from the monotony of everything I know I have to do, to realise that Jesus Christ it’s a lot. It could be worse, and everyone has things they cope with in life, however, that doesn’t mean that I won’t have moments when I’m a little tired by it.

Thus, I’m afraid that I don’t have a neat or interesting ‘day in the life’ for you because that’s not how this disability thing works. Or how anyone’s life works for that matter. And let me clarify that I didn’t type this searching for pity, or for a little moan. In my head, I think that by writing this down and publishing it I’m trying to give myself that look of acknowledgement that I can only get from my parents because no matter how they try, my friends here can’t do it yet. They’ve simply not known me long enough. And away from all of the clumsy self-psychoanalysis, this blog is another attempt to show you as much of my disability as I can communicate through words.

So there you go, now you know that if you’ve ever got a nasty cut or blister that needs nursing then I’m your girl. I’ve got the personal first aid kit of your dreams mate.