Well, it’s officially 2023 and I’m sure many of you are feeling as redundant as I am about what the future holds. These are not simple times.
But my fear of external catastrophies, things I have absolutely no control over, has forced me to find the silver lining on every charcoal cloud.
So when I was passed to a specialist team at the end of 2022, with a whole new diagnosis under my belt, things started to feel even more uncertain, and the sparkled edges of my cloud grew feinter. Which is why it’s taken me a while to open up about it all and find the courage and energy to write this public post.
The most frustrating part is that this journey started over a year ago.
Back in 2021, when we were all still recovering from a global pandemic, life at home had become confusing and concerning.
My existing pain had been morphing for a while, but when Covid-19 finally found me, my pain got far worse. I’d experience random flare ups where I’d sweat and shake uncontrollably as the pain from arthritis and DDG started to inflate and move to my legs and arms, leaving me exhausted and in need of sleep. Usually it happens in the afternoon, but lately it’s taken on a life of its own.
My regular twice weekly shower (which never felt like enough, made me feel dirty, but was all I could manage) has gradually changed to a shower once a fortnight. I HATE THIS FACT, but I can’t be ashamed of it. It’s the only way I can get through something that’s so time-consuming and tiring. There are so many steps to take in order to make showering alone an easier process, and even though I have a shower seat to help me, I’m always wiped out for the rest of the day, and sometimes for several days more. Sadly, I’m not exaggerating.
My partner helps me get ready, laying out towels and my hair and body care products in order of use so I have to bend and manouvre as little as possible while I’m encased in the hellish log flume. I take breaks regularly throughout and when I’m done I take ANOTHER break before starting the drying and dressing process.
I know it’s not normal, I even admit it sounds pathetic, but it’s the only way I’ve found (so far) that’s liveable.
Playing with our young daughter has become much harder as I struggle with the task of learning alongside her while tiring over the volume of mental function needed to keep her engaged. I can’t do bedtime stories any more either, because sitting up for a long period while trying to read in the dark with tired eyes and aching arms and legs is more difficult than ever. Another fact I HATE.
Looking back at lockdown…well, actually, that’s the point. I can’t. My memory is so tilted that lockdown, in it’s entirety, is gone. I don’t even remember the important things like my daughters birthdays, christmasses and seeing my old friends. It’s all evaporated.
Now, the really weird thing is, I CAN remember odd parts of the last 12 months, and I have memories of my childhood and key moments fully intact, but the mundane things, moments with friends and family that you keep in the dungeon of your mind and bring up at drunk weddings and staff parties, are also gone. I regularly find myself saying “I’m sure I saw that person once, but I can’t remember when.” or “Did we go to that thing in 2014? I can’t recall it.”.
Then there’s the effect on my daily memory, which has a much bigger impact on my life and mood because specifically – it destroys my creativity.
Writing, whether it’s for this blog, lived-experience articles, or creative writing for competitions, is one of the most important elements of my life. I love it. I love having a voice, I love that there are places my voice (and my personality) fits in, and I love that I have a soapbox, however small the crowd is in front of it.
So when you spend so much time trying to say things but the words completely evade you, well…words evade me. I think I’ve mentioned before that I can sit at this screen for half-an-hour trying desperately to remember regular words from my vocabulary, but they are bloody gone. I end up using the thesaurus a lot (something I find frustrating) but I’m old-school and believe I should be able to write creatively on my own. And these aren’t complicated words. Yesterday I couldn’t remember ‘hypocondriac’ (ironically). Writing this post today I had to look up ‘dungeon’ and quite recently I had to ask my partner for the an alternative word to examine – I wanted ‘probe’. It’s incredibly embarrassing, and possibly one of the reasons that life indoors feels so acceptable to me. Losing my words in public could be horrifying, leading to panic and a desperation to flee faster than my kid eats a McDonalds.
Which leads to the final symptom that’s been causing me problems. Huge, massive, how-do-you-survive-this-way? problems.
Life inside.
No, for anyone new I’m not actually imprisoned, but I can understand some of the negative elements of incarceration. You see, I’ve only left our home once in 18 months. I have missed every occasion, milestone, and celebration in our small family life throughout that time, and it makes me very sad to admit.
Now, for some time my anti-social tendancies and my lack of a social circle was blamed on agoraphobia. This is still partially the case, but it’s become impossible to challenge my phobia, to TRY and go out again by using the graded exposure we’d been trying, when the possibility of my physical symptoms relapsing or flaring is very real.
Some days I can barely get to the bathroom, I use heated products from the kettle and hot water bottle to help relieve my pain (yes, even in the 40 degree summer heat I was sat right here with a boiling bottle behind me), and I have no idea how I’d manage my pain without them. Then there’s the flare symptoms, the shaking, the sweating, inflating pain that currently only stops with rest, and the foggy brain. The difficulty I have trying to knit together tasks that seem to have a long list of steps to manage – this is something my partner helps me with at home, but outside I don’t know what I’d do. Just getting to the car has twenty steps I haven’t taken for a year and a half – it feels unmanageable. Then, finally, there’s the possibility i’ll feel ridiculously tired without any warning at all.
All these things have taken over a year to test (from home) and have hypothesis after hypothesis ruled out. Endocrinology problems are now fixed, neuro were happy with my pathology, and my liver is functioning normally too. I’m not diabetic, my heart is fine, blood levels, vitamin levels, hormone levels…tick, tick, tick.
After over 12 months of desperation, my GP finally made a diagnosis in December.
I have Myalgic encephalomyelitis/chronic fatigue syndrome, commonly known as M.E./C.F.S.
This is a new journey for me, and as the diagnosis was only sent to the specialist in December, I’m still waiting for my first appointment (via zoom).
Saying that, a huge piece of my puzzle is finally in place, and even though all these facts are upsetting and frustrating, the silver lining is the diagnosis itself, which gives me some direction and hopefully, one day, will lead to some improvements.
Another small sparkle added to the clouds fluffy lining was the answers to questions I hadn’t been asking that appeared from nowhere. Conversations with M.E. specialists and organisations uncovered that some of the less-important problems I have might be part of the same diagnosis. Sore throats on nearly a daily basis, mouth ulcers, general forgetfulness, and longevity of the symptoms are all commonly part of M.E./C.F.S., especially when you’re talking about someone who used to lead such a healthy, busy and active lifestyle.
M.E. / C.F.S. charities and organisations
For anyone with questions who, like me, is struggling to get help quickly via the usual channels, there are places to go that might be able to offer some ideas and support.
M.E. Support are a UK based organisation founded by a lady who was diagnosed with the condition back in the 90’s at the age of just 14. This website is a great resource of information as well as having an email contact option for Louise directly, and information covering places to get alternative external support.
Action for M.E. are a UK based charity who help anyone, of any age, with M.E. symptom management, diagnosis, advice and support. They have a great helpline with highly knowledgeable people waiting to talk to you. Their number is 01179 279551, but opening hours vary so please check before calling.
The M.E. Association are also UK based and offer similar services such as specialist services. local support groups, and a telephone helpline. Their number is 0344 576 5326 and they are available 365 days a year, however opening hours vary so please check before calling.
I am a long way from the 31 year old marathon runner who was active every day. In fact, I’d say I experience grief every day at the loss of the old ‘Steph’, even all these years since I was able to run a half marathon. I know it’s gone, but I don’t think I know how to ACCEPT the new life ahead. I hope that, with the support of organisations and individuals like those mentioned above, 2023 will be the year of this internal acceptance starting.
The picture
How do you draw a chronic pain diagnosis? How do you illustrate that you’re constantly tired and forget simple, obvious things, but can’t explain why?
How do you use a pencil to show that it takes hours just to have a shower once a fortnight?
You don’t.
Instead, I am using my first ever picture created with my new Apple Pencil (thank you Christmas!) and its nothing more than a kawaii depiction of the pain I feel, along with the frustration it all causes.
I wish Cacti were friendly, but if they are anything like M.E. / C.F.S I need to work to make them friendlier somehow.
I guess keeping them hydrated is a good start.
Thanks for reading 💜💜🌵🌵
Creative Steph 