Living Life, Within the Limits of Chronic Illness

Category: Goals Page 1 of 4

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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2021 Goals

At the end of 2019 I posted a small paragraph in my 2019 round up post (which you can view here) with some things I’d like to do in 2020.

“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!”

2019 Blog post

Little did I know at the time how meaningful that last line was going to be to everyone!

As for me, well I’ve made the best I can of 2020. Only 3 in-person hospital appointments, a few telephone appointments and numerous cancelled ones mean there has been little progress on the medical front. Unsurprising given the pandemic and the pressures the health service is now under. But the ones which did take place proved useful.

Of the other things I hoped to do, many have been impossible due to the pandemic; meeting up with friends I’ve made online, and attending the carol service at church have had to be put on hold. Perhaps they’re something I’ll manage in 2021 though, once the pandemic situation improves!

Despite having only left the house a handful of times over the past 9 months (I can count them on one hand!) I still haven’t finished decorating my room. However I have unpacked the boxes and started getting a bit more organised.

I’m reluctant to set any goals for 2021 at the moment; while it can be nice to have things to work towards and even look forward to, my health really isn’t all that good right now and combined with the uncertainty surrounding the pandemic I have no idea where to start. There are so many things I would like to aim for, or even say I’m going to do, but I know in my heart of hearts that with my health the way it currently is the chances of managing them is very remote. And I don’t want to be reading this back at the end of the year full of disappointment at what my health, and potentially the pandemic, prevented me from achieving.

So for 2021 I think I’m just going to aim to make the best of it and see what happens. Fingers crossed it will bring better things than 2020 did! I am going to try and document the good things throughout the year, both through social media, this blog and by keeping a good old fashioned list so at this time next year I can look through and see what I’ve managed to do.

Wishing you all a happy, healthy and most importantly safe, New Year! Here’s to making the best of 2021.

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2019

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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2018 A Review & 2019 Plans

So it’s been a busy year in 2018, more to do with health stuff than anything else and so my list of goals got somewhat forgotten!

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups. Unfortunately I have yet to manage to arrange this, but it will roll on to 2019 in the hope I will finally be able to arrange meeting up with some of my amazing friends.
  • Finish decorating my room. This one still isn’t quite done but I have made significant progress on this front; the heating is now sorted, another wall painted and shelves painted. There is just a wardrobe left to paint, a little bit of wall where the radiator used to be to paint and a bookcase to find, purchase & build! (Thank goodness I have a lot of help in doing all this!!)
  • Attend the church carol service. Unfortunately due to my health and the plans for Christmas I was unable to attend the church carol service, but there’s always next year.
  • Try and find a suitable job I can do from home and manage with my health. This well and truly failed miserably, in fact I have been forced to admit that right now I am unable to work and started claiming benefits (a nightmare in itself), hopefully my health will improve and I will be able to find something manageable in the future but right now doing anything for more than 20 minutes at a time is ridiculously difficult.

So having gone through all the plans I had which I didn’t manage to do, it’s time for a more positive look at 2018, the highlight of which has got to be being a bridesmaid at my best friend’s wedding! They did so much to accomodate me being able to be there, and although I missed out on seeing their first dance, I did manage the majority of the day. It was well worth the week or so of severe payback which followed!

The other good thing that stands out for 2018 is all the things which have gone on healthwise; referrals to the CFS Clinic (although the experience hasn’t always been positive, see here for more, the Occupational Therapist seems to be understanding and helpful thus far), wheelchair services where I was provided with a wheelchair more suited to my size, and finally a specialist cardiologist in London to investigate the dizzy/fainting spells I get, the current theory being Postural Orthostatic Tachycardia Syndrome but that appointment isn’t until May 2019 so we’ve got to wait and see what the specialist says.

Now for 2019…

Obviously the some of the goals for 2018 have got to be carried over as I still want to do them:

 

  • Meet some of the fantastic friends I’ve made online through university and M.E. groups.
  • Finish decorating my room.
  • Attend the church carol service.

But really and truly I need to add a few more which might be easier to achieve too, so…

  • Learn to crochet something other than granny squares
  • Learn Python programming
  • Blog a bit more than I did in 2018, including book reviews and all sorts.

I’m still struggling to think up goals which will be achievable and make the end of the year feel somewhat better than this one does – it would have been nice to be able to cross off at least one of the goals that was on my original list, but here’s to making 2019 a better year than the last.

2018 certainly had it’s challenges but we have muddled through and there have been some wonderful highlights during it too.

I hope you all had a wonderful Christmas and New Year, here’s hoping 2019 brings great things to us all.

 

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