Smiling Clare

Well today is a milestone day, one of which will be marked with cake! You see today marks 20 years since I got diagnosed with Myalgic Encephalomyelitis. 

In the years since, I’ve gained numerous new diagnoses which have put into question that original one, however the hallmark symptom of ME, post exertional malaise, is still present and correct so I suspect it is in with the mixture of everything else. 

I don’t really know what to write today, things are proving pretty tough at the moment – not health wise as such, but as a result of things outside of my control meaning getting enough rest is proving rather tricky. And there’s unfortunately not much I can do about that. Hoping for a solution in the not so distant future but there could be a lot of work involved to get that, which in turn has me worried about overdoing it. Whatever happens I’m a big believer in “this too shall pass”, that keeps me going through the rougher times, always has and I hope it always will. 

I’ve learned an awful lot over the years about what “works” for me in terms of pacing, symptom management & living life (albeit a very limited one). I also know I’m one of the “lucky” ones who has seen some improvement either through medication for other diagnoses, or just sheer luck through circumstances and pacing. Although I’ve described things as pretty tough at the moment, I know they could be a lot tougher, and are nothing compared with what some of my friends live with every single day. I am incredibly fortunate in that sense, however I describe things as pretty tough right now because I feel like I’m hanging onto my current level of health and living by a thread, which could break at any moment. It’s a very tight balancing act and it would only take something else beyond my control to cause that thread to break and my health to spiral again. 

Over the last twenty years there have been many ups and downs. Looking back I have absolutely no idea how I ever managed to do my degree part time from home, my cognitive function now is nothing like it was during those years. But I did it, something 20 years ago I never thought I’d do. I’ve learned so much about myself and how strong I can be when there is literally no other choice, I’ve learned to stand up for myself more and advocate for myself at medical appointments and quite honestly wouldn’t be the person I am today if I hadn’t experienced all these years of illness. 

That being said there is a heck of a lot of stuff I’ve missed out on in the past 20 years which most people take as a right of passage so to speak. And sometimes I feel like that….naivety….if that’s the right word, puts me at a disadvantage when trying to fit in with the world and meet new people. I find it incredibly difficult to know what to talk about because my life and experiences are vastly different to the “norm”. But I’m still here and trying. 

Anyway for someone who wasn’t sure what she was going to write today I feel like I’ve rambled on (with probably random thoughts) for long enough! It’s a day of mixed feelings all round, but a rather important one in my life all the same. 

I haven’t done my usual ME Awareness Post this year, because there is quite honestly so much going on & I just haven’t had the brain power to do both this post and that one. I hope to get a “day in my life” post up this month though, as much as anything else because I like having the little record to look back on each year of what’s changed. 

I’m off to enjoy some much needed cake…ta ta for now! 

Well as has seemingly become habit recently I’m rather late posting this. This blog has been rather neglected lately too; I have all these ideas for posts, some half written in drafts, others still just ideas in my head, but just no energy in the bank to put them together and actually publish them!

But I am hoping to set aside a little time and energy each week to actually start posting again this year. Things are proving rather difficult at the moment, with a lot of admin required which is taking most of my limited energy (more limited than usual due to a lack of sleep) alongside increased symptoms from changing medications while we try and find the right combination to manage said symptoms.

I’m also in the process of trying to find a PA to give my parents some time off each week, but once again that’s more admin and demands on my energy until I find someone which then reduces what else I can manage to do – like writing blog posts, or replying to messages from friends and the list could continue!

Anyway this year I am hoping to create some blog posts specifically about aids and things which help me live independently/make my life easier. I am constantly stumbling across new things which help, saving up and changing aids to see if my latest find is better than what I’ve already got and sometimes just adapting everyday things to suit my needs better.

Fingers crossed this blog might actually get a few more posts on it this year than it’s had in recent years! I still try to be active on social media but even that has been limited lately due to the demands on my energy so I can’t even promise to be active on there – that’s if I even know which one is best to use these days!

Anyhoo I think I better pop off for some rest, and hopefully it won’t be long until you see another, possibly more helpful, post from me soon!

I’m posting this a lot later than usual – time seems to have disappeared this year despite my not actually doing a lot – but here’s my annual day in my life post:

My alarm wakes me at 8:25am, if my dog Dolly hasn’t woken me already, I feel unrefreshed even if I have managed to sleep a good few hours despite the pain. I slowly sit myself up in bed, sometimes using the electric bed adjustment, assessing the pain and dizziness as I go.

Once up I let Dolly out before making my way to my kitchen to do our breakfasts – biscuits & fresh water for Dolly, and cereal and a cup of tea (made with a hot water dispenser) for me. I take my time having breakfast, cup of tea & morning medications before going to get dressed in my bedroom, sitting on the bed to do as much of it as possible. I go to the bathroom and do my teeth and wash my face.

I then brush Dolly before my Mum arrives to help me with some bits, this usually includes a short walk on my crutches for physiotherapy and helping me cook a meal for lunch – with a rest in between.

I’ll have a rest after eating lunch & taking my lunchtime medications before I sit on my perching stool and wash up. I then have another rest for a while before doing some kind of activity- usually card making, knitting or a little bit of housework; a little bit of hoovering (just a small space, not the whole flat), dusting or putting shopping away depending on the day.

Then it’s time for another longer rest – usually a few hours, where I’ll put something simple to follow on the TV for company with Dolly curled up next to me on the sofa – before my Dad arrives to take Dolly out for a longer walk, help me remove my compression socks and get a few other things ready for bed – like night time medications.

Once he leaves I lock up for the night & settle on the sofa with a hot drink and something on the TV & take my last lots of medications for the day. I usually give Dolly a load of fuss too as she tends to snuggle up more in the evenings.

Later on I get the last few things ready for bed such as a drink of water, I get the crockery out ready for the next morning, let Dolly out for her last wee & get ready for bed.

I settle myself in bed, write in my journal for the day, take my final medication of the day & snuggle down hoping to sleep.

As with previous years post this is just an average day. Some days are worse, some are better. I adjust my activity levels and the aids I use accordingly. But this is the amount of activity I currently do each week day at least, unless the day is a bad one. This year’s average day has been a difficult one to write because I’m still working out what I can manage on an average day in terms of living on my own – housework, admin etc – and also because despite it being a year on from my surgery I am still recovering from the knock it caused to my other conditions.

Looking back at last year’s post is actually quite strange, in some way it seems like a lifetime ago that I was preparing to move and have major surgery but in others it seems like just yesterday. It has been a difficult year of adjusting to a new normal, lots of hospital appointments, lots of medical admin and living on my own.

It’s heartening to see how much things have improved since last year; at the time I didn’t expect to be managing on my own in my flat as well as I do – even with help – but here I am. I was also expecting major surgery to be a lot harder on my body than it was, I defied the medics expectations and not only did my body handle the surgery better than expected, I was discharged the following day; not after a week like I was told. That’s not to say it hasn’t been tough on my body and particularly on my other conditions – I’d be lying if I said it hasn’t affected them – but it’s not been as severe as I was warned about, it has however lasted longer and I think I’ve got used to a lower baseline as a result (it’s hard to judge as obviously my pre-surgery baseline to compare to is when I was still living with my parents). In particular I have found my joints to be more unstable after the 6 weeks bed rest post-op, only doing short slow walks round the communal garden each day to help prevent blood clots, my muscles de-conditioned and it has taken months to be able to get back to doing the same level of physiotherapy that I was doing before.

Some things haven’t changed since last time I wrote a Day in my Life post though, so I shall quote from my post back then:

“…when people visit I always put on a brave face, an act so they don’t see just how bad the ME is. I don’t do this for my sake, but to protect them from the truth. There are some who see the ‘real’ me now but it’s taken a few years for me to ‘drop the act’ for them. And if they themselves are having troubles or stresses the ‘act’ of being better than I am and not letting on how bad I really am comes back to protect them. I don’t want to add to their worries.”

This is particularly true when things are proving especially tough, like after last year’s surgery and my first social outings that followed on after that.

As always let me know your thoughts and comments either on Twitter @SmilingClare, Facebook Smiling Clare: A Life Within An Illness or add a comment to this post and I’ll reply when I’m able!

Well I’m posting this a little later than intended. Honestly I don’t quite know where my energy keeps disappearing to, but it seems managing on my own and the day to day tasks alongside hospital appointments leaves little energy for much else – that’s despite my parents coming over to help a few times a day!

But anyway, 2023 has been quite a year with several huge things happening. At the end of 2022 I knew major surgery was on the cards for this year however I had no idea moving out of my parents would be on the cards too. Let alone that it would all pretty much coincide with one another! It’s been a bit of a tough year with several trips to A&E alongside the move and surgery. There’s been a lot of learning to do as well; it turns out you learn a lot about what you can and can’t easily manage (and how much you relied on living with your parents) when you move out! Overall though it’s been good, living all on one level is proving a lot easier even with the additional things which come with living on your own.

Despite all the challenges I’m classing 2023 as a good year –

• I got an accessible flat close to my parents, albeit not fully accessible so I’m having to get adaptations done but I think I would’ve been waiting forever if I’d waited for something perfectly suitable! With help from friends and family we have decorated & furnished it, and generally made it liveable (If you’d seen the state it was in when I viewed and accepted it you’d know that was a lot of work!)
• I’ve had major surgery which has hopefully fixed my kidney; I say hopefully as I don’t get the post-op scan results until I see my surgeon in the new year, but given I’ve not been in agony with kidney pain, or had a urinary tract infection since the surgery I’m assuming it must have been a success!
• I’ve continued with physiotherapy, with a break for major surgery of course, and it seems to be paying off – things are getting slightly easier. It’s still only a tiny bit of movement each day & very slow to build up but it is helping.
• I was referred to another consultant (in addition to the many others!) and they were very understanding and actually listened to me. We hope together we can come up with a plan which helps better manage my pain levels.

Going into 2024 I already have 4 hospital appointments booked, 3 in January alone. But I’m hoping I might finally get round to editing and posting the many posts I have drafted from 2022 which I didn’t get round to doing this year what with everything that has happened. I also hope to start blogging more regularly and perhaps even give the site an overhaul design-wise! Otherwise the aim is to just appreciate every moment which feels nice at the time, and doesn’t involve medical appointments!

Anyway I’m going to leave it there, I hope you all had a lovely festive period with lots of enjoyable moments and that 2024 is kind to you!