Living Life, Within the Limits of Chronic Illness

Tag: 2019 Page 1 of 7


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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Festive Placemats

It’s approaching the season to be jolly…or at least that’s how the saying goes! So I thought I’d share one of the things I often end up doing every year in preparation for the big family meals.

I don’t know about anyone else, but we don’t have a set of matching placemats large enough for the number of people, and dishes we have at the table during the festive period. We just use the ones from throughout the year, including some odd ones we’ve collected over time. But it can look messy and disorganised, we just don’t see the point in spending money on placemats which can only be used a couple of times a year, and have to be stored in the meantime.

And so one year we came up with a solution…each year the placemats and also the coasters get covered in festive wrapping paper to match the theme of the table. That way we have enough of them and they all match each other!

I start off with the plain, boring placemats like the one in the photo below

A picture of a brown coloured placemat with a gold-like border around the edge

And with a little bit of wrapping paper and sticky tape, transform them into pretty festive placemats, as shown in the photo below.

A picture of six placemats, after they have been wrapped in gold coloured paper


It’s quite a simple task that I’ve managed on the sofa rather than at the table at times. And no doubt will probably do again this year.

After the festive season they either stay like this for a few months, depending on how festive the paper is and how many stains they receive over the Christmas period, or we just take the wrapping paper off and put it in the recycling.

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Physiotherapy Continues

Well I had my third physiotherapy appointment a couple of weeks ago, and things are still going really well. Even in just a month of doing the gentle exercises, mostly laying down, I have seen some little improvements in my ability to climb the stairs each day.

It’s nothing drastic, but lifting my foot up high enough to reach the next step has become that little bit easier. And most of the time I’m a tiny bit steadier on my feet while climbing them too.

This may not sound like a big deal, but it makes the task of getting up to bed each night that little bit less challenging. It’s often still like climbing a mountain, but perhaps that mountain is becoming more scale-able.

So at my physio appointment we ran through whether I had been managing the exercises suggested, and how frequently/how many reps of each I’d been doing, before going through them one by one to make sure I was doing them correctly. (Turns out I was doing one of them slightly wrong, so it’s just as well we did that! My memory isn’t the greatest, so it didn’t come as a surprise that I’d done that)

We discussed adding in an additional exercise once a day, which we agreed would be manageable. Along with increasing some of the easier exercises to twice a day instead of once, by easier I mean the ones my muscles clearly weren’t struggling with, unlike others which when I complete my muscles still shake with weakness.

It was also suggested I slowly start increasing the number of reps I do of the exercises by 1 rep, working towards doing 5 reps of each. But this can be done as slowly as required; increasing by 1 rep, on one exercise done once a day, doing it for a week or so and then trying another increase in a similar manner.

The most important part about that is if it proved to be too much I should drop it back to what I was managing, and continue in that way until I felt it was time to try again. Because there is no point in pushing, it will likely do more harm than good.

So all in all another great appointment. I go back again in a month, and we will see what progress has been made, whether I’ll have been able to increase the number of reps of some exercises, and by how much. But I don’t feel under pressure to have managed it, and I think that is possibly the most important part about this process; if it isn’t manageable we will review things, it won’t be seen as a failure on my part, or as me not trying hard enough. And that makes all the difference.

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