Since cave people prized open their bleary eyes at the dawn of human-time, readying themselves for another day of hunting and gathering, there was only ever one goal, one desire, one dream, for the end of their evening.
Was it charring and devouring their fleshy prize? No. Was it seeing friends and talking about tomorrows hunting plan? Nope. Was it making sweet, sweet love to their significant other under the light of the moon in the warmth of their coven? Sadly not.
It was rest.
Rest has been the essential ingredient to any success, whether you’re readying for surgery, childcare, war (also see childcare), school lessons, marathon running, hunting for dinner, or another attempt to get healthier than yesterday. If you sleep well, meditate, relax, you’ll be better equipped to deal with what’s coming.
If you’re wondering why I’ve been missing so long, rest is to blame. Yes, my 3 month disappearance has been largely to achieve this single goal. I’ve needed to stop and get off the train of life for a bit, and the guilt I felt for having to do so is still overwhelming.
Anyone who knows my narrative and the focus of my conversations online will be well aware that my life is already incredibly tiny, quiet and non-busy. I don’t have any direct family or a social circle to think about, so my primary concerns are my daughter, dog and partner, followed by myself and the few things I value. While that sounds like nothing, I somehow manage to pile a huge amount of pulsating pressure on myself to do as much as possible with the few hours of pain-free time I have available. Dealing with our daughters development and education takes up most of our worry, but I also think constantly about my work for charities, writing, drawing, studying, reading…I need to do them all to develop, remain relevant and eventually prove my time off my feet wasn’t wasted. In fact, I want my daughter to know that when my brain and body started failing, I stayed productive and worked hard to keep on top of my grey matter.
Along came Christmas.
Our girl was critically unwell and ended up in hospital 3 times throughout the Christmas break. It’s been discussed on here so I’ll give a brief overview – She’s only 6, and neurodivergent, so illness for her is always challenging. For us as parents it was awful, and the effect of seeing her so unwell had an impact on my physical and mental health, both of which are too unsavoury to discuss in detail.
Before I go on, I’ll just confirm that, although we’re still supporting her recovery, she is continuing to improve 😮💨
Earlier in December I’d been diagnosed with ME/CFS, and I was just coming to terms with this when our daughters health started to unravel. Virtual appointments were booked for the new year and, although I was worried about the long term prognosis, I was hopeful help would start to come and forced my attention to my child. It’s what any parent would do in the circumstances.
In January, as she started improving, I had an appointment with a chronic pain team specialist to help me further with my ongoing mobility problems. My struggle to walk and ambulatory wheelchair use isn’t a secret, but the problems I’m having making it easier to manage are less discussed. I try to keep the nitty-gritty to myself. Anyway, the appointment was online, but it was long (nearly 2 hours) and required a huge amount of concentration and emotional output (that I don’t think I’d prepared for). At the end of this long conversation, the specialist diagnosed me with long covid, and suggested I’d been living with it for over a year.
I’ve had covid twice.
Now, in the years I’ve been living with pain and the deterioration in my memory, concentration, heart health, daily crashes and mobility, I’ve thought about many many things that could be at the heart of it. Saying that, I stop short at asking ‘Dr Google’ because my brain can’t take the anxiety caused by multiple cancer possibilities the search engine would return. I’m unstable at the best of times. But long covid was never on the list, and our GP (who one of us talks to at least once a month) has never mentioned it either. Although I’m now armed with more knowledge, I remain in shock about this diagnosis 2 months on.
Having read all I can manage, I tick many of the boxes, some of which you’ll be able to reference on this blog. Remember me talking about losing huge portions of my hair? Well, it’s one of the most common symptoms of long covid. Fatigue ☑️, memory changes ☑️, problems concentrating ☑️, taste and smell changes ☑️, digestion changes (for me constant, severe constipation) ☑️, daily crashes (which are something I’m still learning about called POTS and sympathetic overdrive) ☑️, insomnia ☑️, relentless tinnitus ☑️, repeating laryngitis ☑️, long recovery time from any illness ☑️.
There’s more, but I can’t be arsed to write it.
But armed with that knowledge I’ve also learned to still find some gratitude because there are some symptoms that haven’t darkened my door (yet), not least life-ending possibilities such as stroke and heart attack, which seem to be hitting long haulers (yes, we have a name) pretty hard now. As time goes on, the number of concerning symptoms becoming public knowledge only inflates, and those of us living with LC grow more anxious about the unknowns that lie ahead for us.
None of us are safe, or even well understood, because everyone is learning as they go. The people we can usually rely on when our minds and bodies tank are managing patients in uncharted territory, and I think many of us feel like Guinea pigs when we just want help.
Although I’ve had my diagnosis, the outlook hasn’t changed. In fact, the landscape is as craggy, dingy and unwelcome as ever. Despite a long covid service existing in my area, whether you get help is a postcode lottery, because who they’ll see and why is anyone’s guess.
I suffered the humiliation of being told I’m the only person out of more than 3000 long covid patients in my area who can’t leave home. Those words came from the same person who, one hour earlier, drew on the comparisons that long covid has with ME/CFS and their collaborative work with that department to try and help patients with similar symptoms.
To be clear – the centres for disease control and prevention estimates that 25% of ME/CFS patients become housebound because of their symptoms, and many U.K. NHS services for ME/CFS are built to help patients rehabilitate their housebound status as a result. So the long covid service in my area sees and acknowledges the similarities, but stigmatises any patients who meet one of the most common symptom profiles.
I’ve spoken to other long haulers who were (or still are) housebound, but in different NHS catchment areas. Some were offered help regardless of their ability to leave home, some weren’t. Like I say, it’s a lottery, and none of us want to play.
If I wanted to live with the symptoms forever, if I wanted to continue to spend every afternoon exhausted after another debilitating POTS crash, if I wanted to stay being unable to eat foods I usually love because they make me vom, if I wanted to struggle in the shower and sit on a disability seat while I grapple with my tangled hair as my neck and back scream at me, if I was happy with the pain that stops me standing for more than 30 seconds, if I wanted to keep forgetting words and getting randomly confused so simple conversations become a stressful minefield, if I wanted to keep feeling overwhelmed and bewildered when a long form is put in front of me, if I wanted to keep listening to this constant, pounding tinnitus that could bring me to tears daily, if I wanted to keep missing important events that my partner and daughter wish I could attend because I’m desperately afraid that any one of these things will happen outside and I don’t know how to manage them….then I wouldn’t be asking, over and over again, desperately, for help.
If I wanted to just live with the status quo, then I could, and I would.
I don’t want to live with the status quo.
The stress of everything (especially our daughter being so unwell) has been horrible, and the usual professional, helpful, prepared version of ‘Steph’ ended up ditching 2 video meetings like those mentioned above without warning. I just couldn’t fall apart in front of these people, and when I started feeling like I was doing nothing more than begging for help, when I felt like I’d hit the rock-bottom of health-related desperation, I closed my laptop and sobbed while my partner held me. If anything, at least he’s here to see it all, hear it all, and provide sympathy.
There’s no question I want change, I want help, I want answers, I want ways to manage and cope with the worst of this, and after 22 months indoors, I want to be outside again. Sadly, I don’t think any of the solutions I need are within reach, and I’m therefore starting to accept that this might be the landscape of my future.
Am I sad? Yes, desperately. Am I worried? Yes, terribly. Have I given up? Nearly. Nearly. Very nearly.
Then, about a month ago, I got my 3rd covid infection, along with our daughter and my long-suffering partner. I was so naive that I never even considered getting it a 3rd time, and as I’m still recovering, I feel like a frigging idiot.
Am i tired? Without a doubt.
We’re managing, but I’ve conceded that it’s time to ask for some support at home, and will be requesting a review from the community care team this week. I doubt I’ll be entitled to help via the council (I’ve heard it can be a very stressful process – not sure I can handle that) but if I can find a charity or organisation that would pop their head in the door, it would mean everything. We can’t change my symptoms, but I have to do something to give my partner more freedom from worrying about me, and our daughter a bit more normality. I don’t expect anyone to look after me, but I need more and more help and support just to stay safe. Maybe, if I can get some respite care support for an hour or two a fortnight then my partner can enjoy some time to himself and I’ll have a professional who sees what’s happening and might have ideas or act as an advocate for referrals.
So, as I say, I have very VERY nearly lost hope, but my brain taps me on the shoulder and reminds me regularly that I’m only 41, and just a year ago I truly believed I would find a way out of all this. I was determined to work towards a professional life that I can manage and enjoy. I’ve always said that this website was to show my daughter that I didn’t give up when the chips were down, so I’m dusting myself off and trying again…again. Only this time I’ll be much slower.
I’m sorry I’ve been absent, but even now I’m struggling just to take a full breath in the morning, find the courage to face the day and accept what pain and fear awaits me. But I’m here, I’m still trying, I still value the need to widen the narrative of mental illness and chronic pain, and I still want to be here to help other people with their troubles.
Remember, I have multiple pages dedicated to help and support for mental health, crisis and various areas of chronic pain. Visit my Get Support and Mental Health Helplines page for more information.
Thanks so much for returning and reading this post. I hope you’ve found something positive and useful while you’ve been here (it’s not all negative, I promise) and I hope you stay. My emails and messages are always open.
Take care of yourself 💜
The picture
Not to break with tradition, I wanted to find something I’d drawn that would work well with this post.
Despite illustration being my favourite pastime, I’ve struggled to keep it going because of pain in my fingers and wrists. It’s a fact of life that I absolutely despise, and I hope it’s temporary.
This picture was finished a couple of weeks ago while I was enjoying some 2am Ted Lasso (yes, I’m still an insomniac!). It’s based on an original oil painting by Leonard Afremov (he sells prints on Etsy). I used his original to make my own version and create something using brushes I’d never touched before. It has many, many mistakes, but I’m proud I tried something new and the rainbow sunset signifies the hope I still have for better days ahead.
Thanks for reading 💜
Creative Steph 