Breda O’Brien: Living with the lingering consequences of Covid-19

Headaches. Nausea. Weird bouts of coughing that feel more like retching. Scratchy throat. Aches everywhere. Exhaustion. My kind doctor is of the view that I should follow the latest guidelines on Covid-19 and self-isolate without getting a PCR test, and wait for 48 hours after symptoms have resolved to return to work.

Her argument is along the lines that if it walks like a duck, quacks like a duck, it is likely to be Covid-19.

But I don’t think it is a duck. Or even if it is a duck, I think it is also a rat, the kind of rat that results in a flare. Some of you reading are already nodding sympathetically because you know what a flare or flare-up means. Medically speaking, a flare is a transient worsening in the severity of symptoms of a chronic disease or illness.

Arthritis, fibromyalgia, inflammatory bowel disease and migraines are just some of the chronic illnesses where people experience flares.

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It may come seemingly out of nowhere or there may be an obvious trigger, such as stress or another illness, especially viral illness like Covid -19.

Most of these conditions are not listed in the very high risk or even high-risk category for Covid-19. No one would equate the degree of risk involved with the worries faced by those undergoing treatment for cancer, or those with chronic obstructive pulmonary disease, or just even suffering the frailty associated with old age.

Return to normality

It is a worry, nonetheless. Those of us with chronic illnesses understand very well that people are fed up with restrictions, particularly younger people. Making mask-wearing optional feels like a liberation and a welcome step on the road to return to normality (whatever that is.) But for some of us, easing the restrictions means increased worry as the consequences of getting the infection are likely to be worse.

Those of us with so-called invisible illnesses feel particular sympathy for those with long Covid

Covid-19 has also triggered a relapsing syndrome of its own, generally termed long Covid, or sometimes post-acute sequelae of Sars-CoV-2 infection. The Irish Society of Chartered Physiotherapists suggests that long Covid has up to 200 associated symptoms, with 60 appearing to be more common.

Those of us with so-called invisible illnesses feel particular sympathy for those with long Covid. Getting a diagnosis or help can be a long, frustrating journey at a time when you have little energy in the first place.

I always have to wrestle with impostor syndrome when I write about having fibromyalgia because I know I have a much milder version than many others.

Diverse

It is sometimes referred to as a ragbag illness as the symptoms are so diverse.  Since it is more common in women, it can be easily dismissed as hypochondria or women’s problems. Two key aspects are non-refreshing sleep and ongoing pain found on both sides of the body and both above and below the waist.

The most common reactions I get to telling people that I have fibromyalgia are: “What’s that? I have never heard of it,” and: “But you don’t look like someone with a chronic pain illness.”

I often say that the other definitive symptom should be guilt because the unpredictable nature of it means I have sometimes let people down at the last moment, confined to bed during a flare.

When you don’t look like you have much wrong with you, that can be difficult for other people to understand.

There are certain pains, such as a burning pain in my outside upper arms, that tell me that I am teetering on the edge of a really bad flare

It took me a long, long time even to go to my doctor initially, but when I did, he was sympathetic and helpful. The symptoms were so insidious and crept up so slowly, I had begun to forget that it is not normal to be in pain all the time, even if those pain levels are only a three or four out of 10.

I gradually wrestled my way to managing my fibromyalgia. There are certain pains, such as a burning pain in my outside upper arms, that tell me that I am teetering on the edge of a really bad flare and I try to adjust my energy expenditure accordingly.

My own tinpot theory is that syndromes such as long Covid, fibromyalgia and ME are going to turn out to have much more in common, something to do with disrupted inflammatory processes, than is currently realised.

Setting up clinics

One positive aspect is that so many health professionals, such as chartered respiratory physiotherapists, have experienced long Covid that there is a real momentum building to offer services that help.

Nonetheless, I am willing to bet there are lots of people out there with vague, odd symptoms, who have not even realised it is long Covid. The HSE has invested significant funds in setting up clinics but once again, they are not available countrywide.

Barring the advent of a new, vicious variant, the pandemic seems likely to recede and become a memory. But for some people, it will open a new, frustrating chapter of trying to get help for a confusing, changeable syndrome that is not fully understood.

As well as being conscious of those who have been bereaved, or deprived of companionship for long periods, it is important to remember those people, too.