Smiling Clare

Living Life, Within the Limits of Chronic Illness

Author: Clare Page 2 of 53

All Change

So in recent months things have changed quite drastically for me, not only has there been the number of hospital appointments, but also things at home have changed. The usual routine, the amount of help available, it has all changed.

I still live with my parents, one has always worked, the other has always been around to help me out, keep the house and the like. But now that’s changed. Don’t get me wrong they are both still here for me as much as they possibly can be, and they do an amazing job, given everything they have going on, but it means I am spending more time on my own in the house.

And truth be told I’m finding it a bit hard. Sure it’s only a for a few hours each day that I’m alone, most of the time, however it’s a few hours where I’m restricted to staying downstairs (admittedly mainly through my lack of confidence on the stairs), to find ways to pass the time which always seems to go slowly with no one else in the house, and generally keep myself entertained.

It has also resulted in me doing more around the house. Granted it’s still not a lot in comparison with what a healthy person would do, and it’s only a tiny bit of the housework that has to be done. But it’s a big deal and has quite an impact on how much else I can do.

I’m doing my best to pace it all out and make it manageable with my physiotherapy routine, but obviously hospital appointments blow it all out.

I’m also finding I’m getting lonely not having anyone to chat to during those times. I used to long for the times I was home alone as it meant I could get some peace and quiet and much needed rest, or catch up on shows I like that no one else does, but now it seems there’s too much of it, or perhaps it’s more that I never know how long it’ll be and thus can’t plan things to fill the time as the things I like to watch on TV and DVD aren’t what my parents like, and if I start an episode I hate switching it off knowing I’ll have to go back to the beginning of the episode next time I get a chance to watch it because I won’t remember what happened!

Perhaps I’m just someone who can’t be pleased? But life at the moment is really difficult (and I’m not just referring to my health when I say that), and spending so much time on my own I want to keep myself busy in order not to think about it too much. Believe me, it is possible to have too much time to think. But I can’t always keep myself busy without overdoing things, and I don’t want to do that, I know that slow and steady is the way to manage all my conditions.

I’m sure, as always I’ll find a way through and adjust to the changes which have happened. It’s just going to take a bit of time. Learning how to balance everything else that is happening on top of the physiotherapy routine, and hospital appointments when my energy levels aren’t exactly at their highest was bound to throw up some challenges along the way. It’s just proving a little more difficult than I expected it to be. And lonelier too.

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And the physiotherapy continues…

I meant to write an update back at the beginning of December after my appointment then but hospital things spiralled and combined with Christmas preparations I just didn’t get a chance.

So, back then things with physiotherapy were going very well; I was managing to complete the gentle exercises twice a day, and had managed to increase some of them to five reps each. My physiotherapist was really pleased with me. And we talked about maybe increasing a little bit more, adding in an extra one to help my shoulders.

However, since then I have had a number of viruses, which have meant some days I’ve been unable to do any physiotherapy, while others I’ve only managed half of what I was previously able to do. I have gradually built it up again as I have recovered from these viruses, only for another one to strike and ending up back at square one again. But we will get there.

Now I know I’ve been saying how fantastic and understanding my physiotherapist is, but I couldn’t help but feel a little apprehensive about the latest appointment; it was the first time I was attending a physiotherapy appointment having not been able to keep up with what had been suggested. And while I know I’d been told it was ok for me to reduce the amount I did during bad days/patches, I was still worried I’d be told off for reducing it so much.

But alas I needn’t have feared that! In keeping with my experience thus far with this physiotherapist, she was brilliant yet again and told me I’d done really well at managing my physiotherapy exercises while more unwell than normal! I’d done the right thing in reducing them, and the fact that I’d continued at a reduced level rather than stopping them entirely for days, had allowed me to bounce back to my “normal” level more quickly.

I have to admit it felt rather strange being praised for having reduced my activity level when feeling worse than usual, after so many years of being told to keep trying to do more but not push through symptoms. (I still don’t know what that really means!) So for now I’m continuing as I was, slowly building back up with the aim of increasing the number of reps for each exercise up to 5, when I feel ready.

I can’t explain how reassuring it is to be told that I’ve shown I know how to manage my physiotherapy and fatigue levels effectively, reducing and increasing the exercises as my symptoms allow. For once I finally feel like I’m doing something right in the eyes of the medical profession, and it’s not being detrimental to my health either.

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Well 2019 has certainly not gone the way I expected it to. At the beginning of the year I never would have imagined I’d have had a total of 15 hospital appointments, let alone become fairly laid back about those appointments.

Back in May I was a nervous wreck about hospital appointments, I hated hospitals and any appointment at them would make me incredibly anxious. Now for the most part I just take it all in my stride. That’s not to say there aren’t appointments I get anxious about; there are, but considering the number of appointments I now have at hospitals, for the most part I don’t get anywhere near as anxious as I used to.

I also never would have imagined I’d be ending the year having been diagnosed with joint hypermobility and referred to specialists in London about that as well. Let alone doing physiotherapy to help strengthen and stabilise my joints, within the limits set by my other conditions. And also be under the care of a haematologist, trying to figure out the cause of some abnormal blood results.

Such a lot has happened medically this year; it seems to have been dominated by hospital appointments, often with at least one a week for weeks on end at times. But there has also been some other momentous things happen as well.

Two holidays, albeit not far from home, but a change of scenery all the same. Yes, not just one, but two! Admittedly one was significantly better than the other, but we made the best of both of them. And it was good to have a break of some kind.

I’ve gained a little independence through buying a secondhand wheelchair with power add on; meaning I can get myself around shops and into town. Not yet confident, or even well enough, to go out on my own in it but at least it does mean I am in control of where I’m going. Although admittedly to begin with, after so many years relying on someone else to push my wheelchair, this was rather terrifying!

I’ve also been out with friends for a meal, without my parents, but with my manual wheelchair, which I managed to self-propel from the car, to the restaurant table etc. with relative ease. Okay, so it completely broke me for the days that followed, but it was so completely worth it for the enjoyment I had during those few hours out of the house.

I’ve even met up with one of the many friends I’ve made online through social media, and I’m hoping to meet up with more in the future.

Quite honestly 2019 has been one overwhelming year in terms of my health, and everything that’s come with it. But my friends, both new and old, alongside this blog and my social media accounts, have kept me going; provided an outlet when I’ve needed it most, and quite truthfully I don’t know where I’d be without them. So thank you to all of you whether you’re my friends reading this, or someone who just pops on occasionally and reads these ramblings of mine, I really do appreciate it.

As for 2020, there’s already 4 hospital appointments booked, here’s hoping they’ll all prove helpful! I’m also hoping to arrange meeting up with some more of the friends I’ve made online, health permitting on both sides of that one! To finish decorating my room and unpacking my stuff which has been boxed for two years now, as well as making it to the Christmas Carol Service at church, which is one thing I didn’t manage this year due to poor health.

Here’s to making the best of 2020, whatever it might bring!

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Christmas & Me

I have to admit I’m usually a fairly festive person, I love everything about Christmas; the carol services at church, the kindness shown by all, spending time with friends and family, decorating the tree, even the gift buying.


This year despite the bright face I’ve been putting on I’m finding it hard to really get into the spirit of Christmas. I don’t know why. Whether it’s because even in the weeks leading up to Christmas it’s all been about medical appointments and managing them alongside festive preparations. Or just that I seem to have so much more to do this year. Or maybe it’s just because I’m still recovering from a virus. Any of those things is possible. Or it could be a combination of them all.

The truth of it is I’m not really looking forward to Christmas. Not in the way I have done other years. This year I’m going to have to use my wheelchair for part of the festivities over the Christmas period, well more of them than I have done other years. I’ve grown used to using my wheelchair when out and about places, but not when visiting other people’s homes. But there is now a walk from where the car is parked to a family member’s home which is unmanageable for me so I will have to use my wheelchair for that. And it feels like a big deal, almost like a step backwards, even though deep down I know it’s not a step backwards, it’s just recognising something which is too much for my body to handle, and finding a way to do it anyway.

I’ve accepted my wheelchair in so many ways, but needing it quite as much as this is a new thing. And as such takes some getting used to.

I am also desperate to get to the Carol Service at my local church this year, but as I write this I am recovering from a virus that has completely floored me. I’ve had to cut back on everything in order not to overdo things. I’m only doing half of the physiotherapy I had been managing fine, I’m having to factor in more rest breaks, and longer ones at that.

The carol service falls 3 days before Christmas Day.

It will be busy. It will be loud. And that’s without the inevitable tea & chat afterwards. I don’t know if or how my body will cope with it. But I didn’t manage to go last year, and it’s an important part of Christmas for me. Christmas without going to a church service of some kind just doesn’t feel right, after all it’s where the meaning of Christmas is.

Do I risk going and being really unwell for the busy days that are Christmas and Boxing Day? Or even worse finding myself falling more unwell while there and forcing someone to leave early with me? Or do I just decide that yet again I’m not well enough to do what I class as an important part of celebrating Christmas?

I really don’t know what to do. Christmas doesn’t feel like Christmas without going to church. Not to me anyway. But just managing Christmas with family and friends feels like it’s going to take an awful lot out of me, and I don’t know if I have enough in me to manage that without negatively impacting my health. Going to church as well might be too much, but should I do it anyway because it’s important to me?

I should be used to making decisions like this by now. I mean I’ve been having to make decisions like this since 2005. Surely by now it shouldn’t be as difficult as this? Surely it shouldn’t tear me up so much to choose managing my health over whatever it is I was hoping to do? But the truth is it doesn’t seem to be getting any easier. Not for me anyway.

So I’d like to wish everyone with chronic illness, no matter how mild or severe, the best of luck for surviving the festive period. For making those difficult decisions about the important events to you, and managing your health. I know how difficult it can be, and I’ll be thinking of every one of you during this busy time of year.

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