Someone actually uttered five scary sounding words to me recently. “You’ll soon be turning thirty”.
Doesn’t sound like anything major I hear you say. Well to me it is.
Yes I still have a few years until I turn 30, although I am essentially the wrong side of 25 for it not to be classed as “fast approaching”. And here I am:
- Still living with my parents
- Being cared for by my parents
- Unable to leave the house on my own
- Dependent on someone to push my wheelchair when I do get out
- Unable to drive
- Unable to work
- Never had a night out
- And there’s a whole lot more I can’t think of at the moment.
I know this doesn’t really matter; age is just a number and we shouldn’t be judged on what we have achieved at each birthday. And yet with “milestone” birthdays, somehow it seems that much harder to just ignore and accept what chronic illness has robbed me of.
On my 18th, I managed to have a party at home with family, family friends and my best friend. Back then my M.E. was lot milder than it had been, and is now for that matter. But I still couldn’t manage a party out somewhere. I only had the one friend from school that I could invite as I hadn’t been in school for the previous 5 or 6 years due to illness. I was starting my degree at The Open University, studying from home part-time; not the university experience most 18 year olds go through.
On my 21st, I’d relapsed significantly in the years that had followed my 18th. I was back to having moderate M.E. and using a wheelchair to get out. Everything had to be carefully planned to avoid too many visitors at one time. We had a quiet family walk (wheel for me) round part of a local park, and lunch outside the cafe there. Then we went to my Grandparents for a buffet meal with them and a few other family members. I was around halfway through my Open University degree, while most friends had finished their degrees and were starting their careers.
Chronic illness almost factored in another milestone birthday on it’s own. My 24th birthday effectively marked the point where I’d been ill half of my life. That one was a hard one. I can’t really explain why, I guess its just a scary thought, being ill half your life. And I suppose it hammers home that this might just be the way life is going to be; the lack of improvement, the almost yearly relapses, it’s difficult to see a way in which things will change for the better.
For some reason or another, I have always hoped that I would be recovered by my next milestone birthday. Which makes each milestone birthday harder too; there’s always a sense of disappointment that despite my hopes and dreams of being recovered, or at the very least a lot better than I have been, by my next milestone birthday I’m not. My 18th was the exception but back then my hope had been that I would be fully recovered by my 18th, and so it was still very disappointing to still be ill, albeit not as severely.
And so it will come as no surprise that despite the fact I should really know better, I had hoped that by the time people started mentioning my thirtieth birthday I would be a bit better than I am. I would have a partner, possibly even have moved out of my parents home because of that. I would be working from home, managing to create a career that worked around my illness. Life certainly wouldn’t be pretty much the same as it has been for three or four years, there wouldn’t be endless medical appointments trying to find answers to worsening symptoms, and I wouldn’t be entirely dependent on others to get out of the house, even if I had to use a mobility scooter for that to be the case.
As much as I try to quash these hopes, and in the years in between milestone birthdays I generally just accept life the way it goes, each time a milestone birthday approaches I end up feeling disappointed that I’m not where I imagined I would be; even with allowances made for illness. I know it’s daft. I know not all dreams come true. But I can’t help but hope that one day, eventually, things will change for the better in some way.
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