Smiling Clare

Living Life, Within the Limits of Chronic Illness

Hello 2022!

As any regular readers of this blog will know, I usually write a bit of a review of the previous year and set some goals for the year ahead but to be honest I’ve not really had the energy to put together anything like that… until now and even now it’s probably shorter than normal. But here it is, better late than never right?!

2021 was quite a year; I like to think I did indeed make the best of it like I said I hoped to at the beginning of the year but it certainly threw some challenges my way too! In all there were 17 hospital appointments, 4 jabs as well as numerous letters and phone calls with my GP (I’ve lost count of those!), dental appointments and other appointments. Unfortunately all 3 Covid jabs caused my health to flare badly for a few months, so things were pretty rocky at times as a result. In fact a month on since my booster jab (which might not be my booster jab as the nurse thinks I might require 3+ booster due to my health) and I’m still recovering from the flare it caused; slowly getting back to what my baseline was beforehand but not there yet. However thankfully I am able to do more than I could in those first few days/weeks following it.

We’ve learned a few more things about my body during 2021; the cause of the bright red rash which appears most notably on my face, neck, chest and upper arms is dysautonomia – my autonomic nervous system not working as it should – and we’re trialling high dose antihistamines to try and control that. Through physiotherapy I also learned that certain muscles don’t always engage when they should, particularly when climbing stairs, and we’ve been working on improving that through strengthening exercises.

Once again, there were few trips out other than to hospital appointments, although I did manage a particularly noteworthy trip to a garden centre with one of my best friends in November. And it was one of the best days.

2021 was also the year I finally reached out to the council for help/adaptations in the home as my mobility deteriorated drastically after my first Covid jab. So far I’ve got a couple of grab rails at the top of the stairs, and encountered what feels like a whole heap of obstacles along the way to finding out what other options are available in my parents little house. In the meantime I’m still struggling with the stairs, steps into the shower and more. So here’s hoping 2022 brings some progress on that front!

As for 2022, I have no real resolutions as such, but I am setting myself a goal just so I have some incentive to actually get it done.

  • To get myself a new wheelchair with power assist as my current (second-hand) one is beginning to fall apart. That’s something I’ve been “doing” since talking with my local wheelchair service in August 2021 but thanks to numerous hospital appointments haven’t actually made any progress with. It’s rather a big and important goal as it will help me so much, I just need to get my butt in gear and start sorting it!

Apart from that the plan is to continue to manage all the medical appointments (both hospital & GP) and medical admin that chronic illness keeps throwing at me, while also trying to make the best of the year. I’m hoping to be able to do something special to mark my milestone birthday in September but that all depends on a whole variety of things including my appointments!

But that’s about it really; I don’t want to put too much pressure on myself given the way my health is and the demands of medical appointments, I mean I have two medical appointments in the first week of January alone, and many more either booked or due to be booked later in the year. I wonder what the total will be for 2022… I guess only time will tell. Besides I think getting myself a new wheelchair with power assist is going to be a big enough task in itself!

Best Wishes to you all for 2022.

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Merry Christmas

I know most people aren’t having the Christmas they planned again this year, but I just wanted to pop on and wish you all a very Merry Christmas, whatever you might be doing.

I hope you find lots of little moments of joy throughout the festivities this year, and of course I will be thinking of all those who are unable to take part due to severe illness.

I’m going through a setback since I had my booster jab at the beginning of December so am having to be incredibly careful in terms of what I do each day; my baseline of activity is now about half of what it was pre-booster, hence this short post – I had planned to do something a bit longer but alas do not have the energy or brain power.

So anyway, Merry Christmas to you all. I hope there’s something for you to smile about this Christmas and you can enjoy some special moments. Hopefully I’ll do a post before the new year, but just in case I don’t manage it: Happy New Year as well. Here’s hoping 2022 is a better one for us all. (I know mine begins with a mass of medical appointments, so hoping it can only improve from there!)

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The Future

It wasn’t until very recently I realised that I don’t tend to think about the future any more. 

People always ask me what I want to do with my life. What I want from it. What my dreams are. And I honestly have no answer. I don’t tend to think about it. 

I guess I dare not to hope too much. To dream of what could be any more. I take everything one day at a time, sometimes one hour at a time. My health dictates that I do. 

How can I think about the future when I don’t know what my health might be like? Right now I have no solid answers, nothing to indicate whether my health will stay as it is forever, improve at all or even deteriorate. My doctors are still working on finding out exactly how my “system works”, to quote one of my doctors. The truth is we still don’t know a lot about what is wrong and what it means. 

With that in mind, is it really that strange that I find myself unable to think about the future? 

I’d like to imagine it might include finding a partner, moving out of my parents house and living more independently. Much like I always thought it would happen when I first got ill; although back then I always imagined I’d get better too, now I’ve accepted that might not happen. But do I really dare to hope that any of the rest will happen? 

I’m not usually a negative person, I’m always one for finding the positive in a situation. But for some reason when it comes to the future, and what I want from it, I don’t really have any answers; positive or otherwise. The only thing I want is to know exactly what is wrong with me and what that might mean, what the treatment options are, and ultimately what the outlook is. 

Until I know that, is there any point in even taking baby steps towards something which could end up being unobtainable? I’ve had so many hopes dashed over the years; things I’ve hoped to achieve but not been able to, perhaps this is just my way of protecting myself. 

Perhaps I need to chink away at the wall I’ve put up, to try and find a way to see something in my future rather than just focusing on getting through each day. Because at the moment that is all I’m doing. And it’s all I can think of doing. 

I dare not hope too much, I’m scared to do so. I don’t think I could cope with the disappointment if my health meant whatever I hoped for couldn’t happen. And I know that sounds negative, but trust me I do find positives in every day. I’m just not ready to try going beyond that yet, I need to focus on the things I can do before working towards those things I might be able to do. 

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Birthday Blues?

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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