Things have to get worse before they get better

The past few months have been excessively tough. I’ve held back from writing because part of me still doesn’t want to admit just how bad things have got.

Over the 17th and 18th of February I had 30 seizures in just as many hours. It hit me hard (as you’d imagine) both physically and mentally. It’s only now, nearly seven weeks on, that I’m finally starting to feel that my life is back on track. I had to put absolutely everything on hold, something I would have resisted a few years ago. However, after having seizures pretty much my whole life I’c learnt that the only way to recover is to simply let yourself do so.

I am now in the process of increasing my new medication and although it finally seems to be doing its job, I’m also experiencing negative side-effects. My general energy levels have drastically reduced and my balance and coordination is completely off. The latter is rather debilitating particularly when you consider my complete lack of spacial awareness. I have a habit of walking into people and walls anyway, being unable to lean to one side without nearly falling over simply makes the prospect of injuring myself far more likely. Being wobbly is by all means better than seizures but I’m still having to adapt. Things as simple as putting on my slippers have become harder and having a cat who like to walk directly under feet is also rather scary (I think I’d kicked in the face at least three times this week).

I still feel that I am in a generally good place but after facing this trauma I’m concerned about my future. I’ve known for about a year that I’ll probably never reach my full potential, particularly in relation to careers. But I’m now concerned about whether I’ll ever have any form of independence. With my health so unstable, living alone just doesn’t sound safe which significantly affects my aim of beginning a pHd, I have to make sure I’m at a university that is easily accessible for both me and my parents/carers.

What I’m feeling the most at the moment is raw frustration, I have so many ideas and so much passion yet I feel as though I’m not really getting anywhere. I know I’m making small steps towards where I want to be but there certainly not big leaps. One massive achievement I’ve made (no idea how) is fixing my body clock after 24 years of not much good sleep. I’m currently getting up around about nine most days of the week.

Hopefully having more hours in my day will speed up my journey to success. I will always argue that it the struggles that give me the determination to continue. Everything I ever achieve will be in order to prove society wrong. I’m slowly getting and super proud!

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