Cotswold Life

COVID and me

Emma first fell ill with the virus back in March. Six months on, the aw­ful im­pact is still be­ing felt

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For the past four months I’ve kept an overnight bag packed and ready to go by the front door. And when I’m in the bath­room, I don’t lock the door. As some­one who al­ways locks a bath­room door, even when alone in the house, this is quite telling. It’s be­cause I don’t trust my body any more.

For four months I have felt that it could fail me at any time. I’ve felt sec­onds away from the point when my short­ness of breath, chest pains, sore throat, fa­tigue and var­i­ous other symp­toms were no longer man­age­able at home.

At the be­gin­ning of all this, in early March, my nat­u­ral in­stinct was to as­sume that my cough was just that - a nasty cough. De­spite re­cent in­ter­na­tional travel, it seemed al­most melo­dra­matic to won­der if I had be­come in­fected with the novel coro­n­avirus be­fore our gov­ern­ment had even de­clared a pan­demic.

As my chest got tighter and tighter, I ar­ranged a phone call with my GP. Prob­a­bly equally dis­dain­ful of drama, he pre­scribed an­tibi­otics. When they didn’t work, he pre­scribed an in­haler, then steroids. By now we were in lock­down and my won­der­ful part­ner Si­mon drove many miles around Glouces­ter­shire to find a phar­macy that was both open and had the right med­i­ca­tion. But noth­ing helped. When I found it in­creas­ingly harder to catch my breath and I lost all sense of taste and smell, I called 111.

And so be­gan a strangely im­per­sonal med­i­cal jour­ney – one in which symp­toms were boxes to be ticked, and I felt more like a statis­tic than a pa­tient. As my list of symp­toms pushed my calls up the chain of 111 op­er­a­tors, I was ul­ti­mately in­structed to go to A&E.

The next time I called there was an am­bu­lance at my house within 20 min­utes. But un­less your oxy­gen level is dan­ger­ously low or some­thing shows up on an X-ray, there is lit­er­ally no treat­ment avail­able. Af­ter be­ing ex­am­ined by paramedics and A&E doc­tors, it was ad­mis­sion to hospi­tal or noth­ing. I was de­lighted to be in the lat­ter group, of course. I thanked my lucky stars to avoid the ter­ri­ble state of so many un­for­tu­nate peo­ple fill­ing the COVID wards and the ICU, but be­ing sent home, with no med­i­ca­tion and no ad­vice other than to “Come back if you get any worse” was de­mor­al­is­ing and ac­tu­ally rather scary. I used to be a bal­let dancer and the men­tal­ity and self-dis­ci­pline of push­ing through an in­jury never re­ally leaves you. I’ve danced with torn mus­cles and bleed­ing toes. I’ve even danced with a bro­ken rib, but I’ve been hugely frus­trated to learn that there is no ‘push­ing through’ COVID. Any mi­nor ex­er­tion such as a few min­utes of gen­tle gar­den­ing or wash­ing my hair leaves me so thor­oughly ex­hausted and short of breath that ly­ing down is the only op­tion. Fa­tigue, as a symp­tom, sounds al­most Vic­to­rian, bring­ing to mind faint­ing-couches and smelling salts, but this fa­tigue isn’t about feel­ing sleepy (at least not for me). It feels like one of those marathon run­ners that you see with wob­bly legs and un­fo­cused eyes, stag­ger­ing to­wards the fin­ish-line, only to col­lapse on the ground mo­ments later. This panic-in­duc­ing level of fa­tigue has been star­tling and im­mensely com­pro­mis­ing.

And it fluc­tu­ates. I im­prove slightly, have a cou­ple of good days, as­sume I am on the road to re­cov­ery, only to go right back to feel­ing hor­ren­dous again. This is more than just an­noy­ing as it poses the dilemma of what to tell all the kind peo­ple who reg­u­larly en­quire about my health. Two weeks of be­ing un­well was what the ex­perts were telling us to ex­pect. What kind of wimp am I if three months down the road I’m still un­able to have a phone con­ver­sa­tion that lasts more than a few min­utes?

I have asked my­self that con­stantly, ques­tion­ing my re­silience, my strength of spirit, even my san­ity. Why was I mak­ing such a big deal of this? Why was I not get­ting bet­ter? Watch­ing Boris Johnson go back to work within a cou­ple of weeks of leav­ing In­ten­sive Care just made him even more ir­ri­tat­ing than usual. And then, thank­fully, peo­ple started talk­ing about some­thing called ‘Long COVID’.

It was such an enor­mous re­lief to know that I wasn’t the only one. So­cial me­dia plat­forms have come into their own by bring­ing to­gether a strange col­lec­tion of peo­ple, all shocked and con­fused by their seem­ingly end­less and widely var­ied POST-COVID symp­toms. We are the ‘Long-haulers’, or the ‘Long­tail­ers’. We are all dif­fer­ent ages, with en­tirely dif­fer­ent de­mo­graph­ics, but it was the doc­tors, the sci­en­tists, even the epi­demi­ol­o­gists among our ranks who, when speak­ing up, gave our group the grav­i­tas to be taken se­ri­ously.

Whilst I have spo­ken to my GP a few times, I have not been seen by him. Other than two vis­its to A&E, I have pretty much been left to my own de­vices. I have a few medic friends who have given me ad­vice over the phone, but to feel more un­well than I ever have in my life be­fore and not be un­der reg­u­lar, di­rect med­i­cal su­per­vi­sion has been very fright­en­ing.

More than a month ago I was grate­ful to be re­ferred to a Res­pi­ra­tory Con­sul­tant, but that meet­ing did not go well. Af­ter the short walk from the car park to the hospi­tal en­trance, I was so short of breath that I was asked at re­cep­tion if I needed a wheel­chair, but the doc­tor him­self, af­ter deem­ing that noth­ing re­mark­able was ev­i­dent in my test re­sults, started ask­ing the kind of ques­tion that re­vealed what di­rec­tion his di­ag­no­sis was head­ing to­wards. “How’s ev­ery­thing at home?” “Ex­cep­tion­ally good, thank you” I replied,

“And pro­fes­sion­ally?”

“I’ve got a job wait­ing for me in Los An­ge­les as soon as it’s safe to travel, so, re­ally good there too..”

Of course, he didn’t know me from Adam. He didn’t know that, de­spite my seem­ingly damn­ing job ti­tle of #Ac­tress’, I am not a neu­rotic or histri­onic per­son.

He didn’t know that I used to be a bal­let dancer, that I have a very high pain thresh­old. But I had told him that, prior to COVID, I worked out with a per­sonal trainer twice a week and was the fittest I’d been in years.

COVID-19 is a new dis­ease. It’s cer­tainly un­der­stand­able that doc­tors have yet to un­der­stand its patholo­gies and I’m sure that this par­tic­u­lar doc­tor spent most of his days fight­ing for peo­ple’s lives in the ITU, so my case was rel­a­tively unim­pres­sive, but it was des­per­ately de­press­ing to have my very ap­par­ent breath­ing is­sues dis­missed as, what amounts to, a bad habit I’d ac­quired since the in­fec­tion.

Ini­tially, “Try to push your­self a lit­tle more each day” was the in­fu­ri­at­ing ad­vice from the medics. Did they re­ally not think I was do­ing that al­ready? For­tu­nately, now, as ‘LONG-COVID’ is be­ing seen more and more in non­hos­pi­talised pa­tients, and its sim­i­lar­ity to Chronic Fa­tigue Syn­drome has been noted, the rec­om­men­da­tions are the op­po­site. CFS pa­tients and their doc­tors have gra­ciously been ad­vis­ing LONGCOVID sup­port groups and warn­ing that too much phys­i­cal or men­tal ac­tiv­ity can cause some­thing called ‘Post-ex­er­tional malaise (‘malaise’..? An­other Vic­to­ri­an­sound­ing ail­ment for sure) and that it’s all about ‘pac­ing’. Hope­fully, any re­search into LONG-COVID will also be ben­e­fi­cial to the CFS pa­tients who have been fight­ing for help and recog­ni­tion for far too long.

Around the world, long-term COVID suf­fer­ers are speak­ing up about their de­bil­i­tat­ing health con­di­tions and about doc­tors who tell them, like many CFS suf­fer­ers, that the is­sue might be all in their heads. The term ‘gaslight­ing’ comes up a lot. One thought­ful doc­tor pointed out that, when writ­ing notes on case his­to­ries, the com­mon use of “The pa­tient com­plains of fa­tigue” should be re­placed with “The pa­tient is fa­tigued”. A sub­tle dif­fer­ence, but far more ob­jec­tive. And re­spect­ful.

Re­cently, there have been re­ports on a new study in the jour­nal JAMA Car­di­ol­ogy, which found that 78% of recovered COVID-19 pa­tients had per­ma­nent heart dam­age. The study from the Univer­sity Hospi­tal Frank­furt on 100 pa­tients, the ma­jor­ity of whom had not been hos­pi­talised and had recovered at home, had my­ocar­dial (heart mus­cle) in­flam­ma­tion even af­ter re­cov­ery. This con­di­tion is only re­vealed by an MRI scan or a (po­ten­tially dan­ger­ous) biopsy and will, un­doubtably, be ac­count­able for many of the on­go­ing symp­toms ex­pe­ri­enced by LONG-COVID suf­fer­ers.

This is hugely fright­en­ing. Once this re­search has fil­tered down to lo­cal-level care­givers and the main­stream press, let’s hope that no-one will be al­lowed to di­min­ish the se­ri­ous­ness of catch­ing COVID-19 or ridicule mask wear­ers and those tak­ing their so­cial dis­tanc­ing re­spon­si­bil­i­ties se­ri­ously. The whole “You’re not the boss of me” at­ti­tude of the mil­i­tant mask and sci­ence de­niers who self­ishly put the health of oth­ers at risk is baf­fling to me.

What­ever the ae­ti­ol­ogy of my con­di­tion, the peo­ple who live with me have wit­nessed my strug­gles and have cared for me spec­tac­u­larly well. I ad­mit to be­ing a bad pa­tient. I’ve al­ways been adamantly in­de­pen­dent and I truly dis­like be­ing fussed over, but my daugh­ter Micha and my part­ner Si­mon have, mirac­u­lously, found a way to keep me smil­ing through­out. My son, Cameron, calls me ev­ery sin­gle day and vis­its as of­ten as he can. I con­sider my­self ex­cep­tion­ally lucky.

But I still find it hard to ad­mit to not feel­ing great. When peo­ple, so kindly, en­quire about my re­cov­ery it feels like an ad­mis­sion of fail­ure to say that noth­ing has changed. My in­stinct is to tell them what they want to hear and say I’m feel­ing a lit­tle bet­ter, even if that isn’t the case. If I’ve put on proper clothes and makeup and some­one says I’m look­ing bet­ter, it feels ungrateful and whiny to say “Thank you, but ac­tu­ally I don’t feel any bet­ter”.

When I wake up ev­ery morn­ing and, once again feel the pain in my chest and still find my­self gasp­ing for air, it’s easy to feel de­mor­alised. I have done ev­ery­thing I can to fight this mind­set as I’m all too aware that the mind-body con­nec­tion is real and pow­er­ful. Yet, as a friend pointed out, the body-mind con­nec­tion can’t be ig­nored ei­ther. Feel­ing a bit down be­cause you’re feel­ing a bit shit, is un­der­stand­able.

So, all I can do is take one day at a time: en­joy the things I can do and not harp af­ter the things I can’t, for the mo­ment, ac­com­plish. I take plea­sure in the small things; a crop of potatoes, the deer wan­der­ing through my gar­den, even a Tesco de­liv­ery with no sub­sti­tu­tions, and of course, the won­der­ful peo­ple around me.

My heart goes out to all the peo­ple who have suf­fered far worse than me, ei­ther with their own ill­ness or by los­ing loved ones. I know how lucky I am. Even with this new, smaller life, I am very happy in­deed.

‘To feel more un­well than I ever have and not be un­der reg­u­lar, di­rect med­i­cal su­per­vi­sion has been very fright­en­ing’

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