Living Life, Within the Limits of Chronic Illness

Another Milestone Birthday

Earlier this week I posted a tweet with a list of things I’ve never done

I later returned and added a few other tweets about my life:

And to be honest I was overwhelmed with the response I received (You can see the thread of tweets here: https://twitter.com/SmilingClare ). I wasn’t expecting anything like the number of likes, retweets and replies, let alone new followers, I received all from sharing an honest list of things I’ve never been able to do.

Back in 2014 I wrote a similar blog post reflecting on my life as a 21 year old compared with what I’d always imagined my life as a 21 year old would be like, and this years tweet was posted in a similar vain. Approaching yet another milestone birthday I can’t help but think about how different my life is compared with how I always imagined it would be; for me I’ve always hoped that by the next milestone birthday my health would be better – to begin with in those early years of illness it was always “I’ll have recovered by the time I’m 18”, then “I’ll be a lot better, if not recovered by the time I’m 21” – and although I have accepted my illnesses are always going to be present, and I’m never going to fully recover, I always hope that by the next milestone birthday I will be living a more ‘normal’ life but alas that isn’t the case this time.

Unfortunately many of the things I hadn’t done at the age of 21, which most people would have, I still haven’t been able to do. There’s still no parties/going out to the pub for me; I can’t cope with the noise, the lights, the crowds. Alcohol is almost a complete no go, I’ve never been able to drink much but now it not only makes symptoms worse but also interacts with some of my medications. I rarely go out anywhere other than hospitals, and when I do it’s only to local places at quiet times. Again going places when it’s crowded although possible makes me very ill afterwards. I still haven’t learned to drive because I don’t feel like it’s safe for me to do so; having passed out in the passenger seat before it doesn’t seem like a good idea – I don’t even know if I’d be allowed to because of that.

While all my old friends now have jobs, relationships, are getting married, have moved out and are even having kids, I’m still stuck in much the same place as I was before. With so many regular hospital appointments I don’t have a lot of energy left in the tank to do the basics, let alone have a job as well. I had planned to get on a dating website this year, but once again my health & the dramas that it’s brought me this year have prevented me from doing so, which means no relationship is in the offing. I am looking for an accessible home to be able to move out of my parents house & have some independence BUT that’s no mean feat in itself, and I’ll require some support when it does eventually happen. As for kids, well there’s a dream I think will never come true, I always imagined myself being a Mum but I can’t imagine managing having a child even if I was in a relationship. Not with my health the way it is; it wouldn’t be fair on them or the kid. My life is still a far cry from the one I pictured I’d be living, and the stark reality of that is sometimes hard to stomach, but for the most part I make the best of things and I’m happy.

I think it’s important to point out that I don’t begrudge any healthy people of all they can do. For making the most of their lives. I admit, I occasionally feel a little bitter and sorry for myself that I can’t do all a healthy person can. Especially if it’s something I dream of doing. But for the most part I’m happy for them. They have the abilities and opportunities I’ve been denied through no fault of my own, and they’re making the most of them. That’s the way it should be. I don’t want my friends to feel they can’t discuss their lives with me, at times their stories are my only connection with a ‘normal’ life. I don’t blame them for excluding me from events because they realise I won’t be able to cope with it.

As I approach my 30th birthday this year I am preparing for major surgery to reconstruct my left ureter where it’s partially obstructed. I’m just thankful that it seems I will get to make the most of my birthday before the surgery, rather than while recovering from it. I’ve been warned the surgery will set my health back a lot because I have so many comorbidities, and that I am also at high risk of complications because of them. In fact as I type this although I am on the waiting list, there is still a bit of a question mark over whether I can have the surgery as we’re waiting for my cardiologist to give the go ahead. So I’m busy getting things organised for the next few months so I am prepared for if/when my cardiologist gives the go ahead and I get a date for surgery. It’s not quite how I envisaged the lead up to my 30th birthday but then again this whole year hasn’t exactly gone the way I envisaged it would either. However I’m determined to make the best of things, there will be quiet celebrations on my 30th birthday and I will try to forget about the upcoming hospital appointments, admission and major surgery at least for that day. Thankfully my birthday is on a Sunday this year which should mean no post that day and therefore no hospital letters arriving in the post to ruin my day!

Here’s hoping that this next year sees less hospital appointments and some benefits from new & continuing treatments which will hopefully further improve my quality of life. So here’s to turning 30 in a few weeks time and whatever my 30th year may bring!

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2 Comments

  1. One of the hardest parts of becoming chronically ill whilst your still growing up is watching the people around you do the things you wish you could do but aren’t able to. Whenever I find myself feeling bad about it, I try to remind myself that it’s not a fair comparison and that it’s OK that our lives are different, but it’s still difficult. I really appreciate this post, it highlights how people’s lives and the timeline in which they do things when chronically ill can be different but still shows that there’s some happiness to be had. I hope your surgery goes well and the recovery is manageable

    • Clare

      It certainly is! Sorry it’s taken me so long to reply, honestly time has flown since I wrote this post. Reminding yourself that it’s not a fair comparison is a good idea, and something I also try to do. Thank you, I’m still waiting at the moment but hoping it will be soon. I hope you’re doing okay.

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