Ever since I became ill birthdays have been bittersweet. They are extremely difficult to navigate emotionally; on the one hand I can enjoy the day, the joy that comes with seeing friends and family (all carefully paced often across more than a day) but on the other hand it is really really hard to see another year go by in which things have stayed pretty much the same.

Somehow on birthdays I always end up looking back at life, and it is often heartbreaking to see how little has changed over the years. Sure I’ve learned how to better pace myself, we have certain symptoms under better control, I’ve gained new diagnoses, do daily physiotherapy and now have regular hospital appointments where we are trying to find out more about how my body functions.

But ultimately a lot of things remain the same as they were back when I was 12. I still spend most of my time at home, still live with my parents and rely on them for basically 24/7 care; from helping me up & down stairs, to dressing & undressing my lower half, they also deal with my fainting episodes and so much more. I rarely leave the house without them & am unable to go out on my own – I always have someone with me. And there’s much more than that too.

Because it has now been so long since anything has ultimately changed, I struggle to look to the future. In fact it’s not very often I think about the future, but that’s a story for a whole other blog post!

Anyway it’s safe to say I now find birthdays so much more difficult than they were pre-illness. Yes there are happy moments, and I do still manage to “enjoy my day” but behind that smile you see on my face is a whole turmoil of emotions and the grief for a life which I feel I’ve missed out on and am still missing out on, for all the things I’m still unable to do despite my age.

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