Living With A Chronic Illness In The Time of Corona

Well hi there! It’s been a little while since I’ve been posting on either On Being Childfree or On Living With Illness. I’d never intended to take such a long break but at the start of lockdown everything just felt so strange as we all tried to navigate this global uncertainty and I came to the conclusion that people probably had enough on their plates without me touting around for guest posts from people sharing further struggles and challenges.

And now here we are, coming up to three months since we went into lockdown. Remember when it was announced back in March and we all wondered how on earth we’d get through three weeks? Time somehow has a way of flying by even when our lives are turned upside down.

Pete and I have spent a long time talking about how fortunate we are. With no elderly relatives, no children, him able to work from home comfortably in a dedicated office, the excuse of a dog to make sure we’ve at least been getting out for a daily walk originally. Yes my work has been very thin on the ground but overall, we’re fine when I think about how many people have suffered such heartbreak, financial uncertainty, relationship worries and more.

However, it doesn’t tell the entire story. Because when you’re ill during a global pandemic, and I don’t just mean a stomach bug or a cold, I mean suffering with an ongoing illness, it can be the biggest physical and mental battle you’ll go through.

Many of you know that last year I was diagnosed with Ulcerative Colitis and severe iron deficiency anaemia. It certainly turned a large part of my 2019 upside down, following on from a torrid 2018 that I will probably always look back on as being the worst year of my life, although as time goes by the sadness of the great work debacle lessens and I’m able to focus more on remembering all the good years I had and less on the final year of hell.

What I still feel frustrated about though is the fact I’ve been left with a lifelong illness that was almost certainly caused by the stressful events of 2018 and one for which there is no cure. Yes, compared to so many people with other illnesses I’m so very lucky. And even compared to other people with Ulcerative Colitis I think I manage pretty well less than 18 months after being diagnosed. It still makes me sad at times though and I’ve done some proper ugly snotty crying to Pete over the past couple of months about how unfair it all feels.

UC is in general considered to be a cyclical illness. What this means is that whilst it never goes away fully, you can go through periods of remission and periods of flare. These can last for weeks, months, years even and when the remission happens it can feel as though you’re not even ill anymore. Yes, the fatigue side of the illness never goes away (at least not in my experience) even when all the other really unpleasant symptoms subside but honestly, having unexpectedly reached remission between around October last year and March this year, it’s SUCH a relief.

The difficulty is though that you just don’t know when a flare might appear. For some people it can be triggered by food, for others it’s a lot more insidious and in my case it’s a stress/anxiety/nerves thing. Which is so odd because I’ve always considered myself the most positive, happy-go-lucky person. Outwardly, I rarely feel stressed but the subconscious within us all is incredibly strong and I’ve learned so much about something called the gut-brain axis, which I’d never heard of prior to getting ill.

In layman’s terms, this explains the power our brain and mind has over our digestive functions. It’s why for some people if they have to give a presentation at work, or a job interview, they’ll get a temporarily upset tummy because the brain is sending signals to the digestive system that something is wrong and there’s absolutely nothing you can do about that. No medicine can control it. The only solution is to try and stay as relaxed, calm, stress-free as possible.

Under normal circumstances, that’s somewhat achievable. I’ve learned that things that are good for me are exercise, taking deep breaths when I experience the painful cramps UC can cause, just trying to keep myself in a positive mindset and understanding that my mind and body now need to rest more regularly than they ever used to do, and will need to for the rest of my life as long as no cure is discovered.

But what do we do when something like Covid-19 strikes?! As quickly as I was breathing a huge sigh of relief that I’d reached a state of sustained remission, I was plunged straight back into flare. What this means for me is regularly waking up in the night to have go to the toilet, sometimes 2-3 times a night. It means being in the middle of gardening and suddenly gripped by the most painful tummy cramps and wondering if I’ll be able to get the toilet in time. My hair has started falling out again (not dramatically but every time I wash it there’s more hair loss than there was), and that feeling of sometimes struggling to catch a breath because I’m losing more iron and absorbing less nutrients.

It’s nothing that doctors/consultants/medication can help with, it’s just something that you have to learn to manage. Subconscious worry is so hard to combat – on an immediate level its financial and worrying about future employment opportunities. I’d started applying for full-time jobs again at the back end of last year which had continued into this year but all that has ground to a halt. Paid freelance campaigns have been increasingly thin on the ground, totally understandable since businesses are struggling across the world.

And simply just on a humanitarian level we all worry about people in general, even ones who aren’t friends or family. We worry about people in abusive relationships, people who are working on the front line, people who are single parents, people who can’t see loved ones, people who have to isolate by themselves, the list is endless. I don’t think you can even be alive and NOT care about the lives of strangers, surely?! It’s what’s fuelled our daily conversations at home of showing gratitude and not wanting to take anything about our own personal situation for granted.  

Part of me wishes I could switch off that worry because I know the more I worry, the more my body breaks in many different ways. But if we can’t show compassion in times of difficulty what’s even the point to any of it? I know so many people will understand what it’s like to have an illness during a pandemic, from people who have had cancer treatment postponed, to the army of chronic illness sufferers out there. I’m not alone, far from it.

And as hard as the past 3 months have been, I know that if I got to remission before I can get there again. I’m hopeful that as we tentatively start to emerge into a new world – needed on so many levels – how I feel will settle down again. It’s a bit like being a human volcano (which if I think metaphorically makes me giggle, alternating between being dormant and being explosive). And just a little reminder that when so many of us have been spending even more time online than normal, we never really know what’s going on behind closed doors in people’s lives. To all the Spoonies out there, you are seen.

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