15 December 2020
This week marks covid + 9. I have long covid.
Between the two weeks’ flu-like symptoms and the hospitalisation often leading to death, there is us, the long haulers. I’ve been wanting to write about my experience for a while, I was worried revealing something private, but the necessity of raising awareness on the long effects of covid overrides my usual reserve.
On the long covid cases, Danny Altman professor of immunology at Imperial College tells us that:
These figures are somewhat more worrying even than many had feared. If one extrapolates to global Covid-19 cases, this means there are 5-10 million people out there with a long-term condition for which we have no current explanation and no treatment plan. (…) There was no information on how long the condition lasts.[1]
I am on corticosteroids, Prednisolone 10 mg. This is a game changer; I can do things without the need of constantly having to rest after an activity. I have so much more energy - it is a drug. Until I started this medicine - two weeks ago - I was learning to pace myself. “Do one thing, rest, do another” was my motto. I’ve had several relapse episodes since March, I have been on antibiotics twice this year, and twice on the Otomize ear spray, a topical corticosteroid. Somehow, I have managed to complete my Barbara Hepworth project, and my masters thanks to an extension deadline, but it has been an incredibly challenging year. I can ‘t be on corticosteroids for ever, I am due to start decreasing the dosage soon. We will see.
To date I have yet to see a specialist. I have been referred urgently to ENT, and respiratory medicine but there aren’t any appointments available. The NHS is overstretched. I have had two consultations with Covid Rehabilitation over the phone. Emma, my consultant is lovely and she is also providing psychological support.
“Why me?”
The first consultation with Covid Rehab lasted an hour, gathering data we so can survey the long covid patients. But what about the Long Covid clinics, will they roll out shortly?
Soon we’ll understand how this virus operates, why my father got over it with no lingering symptoms and why I never completely recover. From the start, I had a multitude of symptoms, we now know that this is more likely to lead to long covid.
What we went through in March…I’m only just about coming to terms with it. I was not tested and could not see a GP until June. Being ill at home in quarantine, being worried that my husband and son would develop symptoms, that was incredibly challenging. I started developing a fever mid-March, very quickly things escalated, I had many symptoms besides the fever: cough, headache, ringing in the ears, earache, crackling sounds when inhaling, wheezing, tight chest, exhaustion, nausea… I called 111. They said “you are doing the right thing by calling us”. I mentally repeated “I am doing the right thing”. They said “as you know we are not testing people unless hospitalised”. I was to call back if I was experiencing respiratory distress.
I was isolating in the loft and I could hear Paul saying at the window “we are in self-isolation, just drop the stuff on the door step”. We had to get used to this new way of living. Maybe I just had flu?
On Day 9, Paul started to experience cold-like symptoms, his voice became lower… I was so worried for him, us…But no that was it, short-lived, and then he was fine.
A couple of weeks after I developed small cuts on all my finger’s joints, like tiny open wounds, thick patches, it was hell…The exhaustion was unbearable. I was told the skin reaction on the fingers can be triggered by the virus. “You must be patient”. “I must rest, be patient” I repeated.
Then my father in Paris developed a fever and a cough, he was tested positive, so was my step mother, she was positive/asymptomatic. I was never tested. The isolation with no medical support was taking its toll. I was dreaming of getting on my bicycle and going to the sea front… that was my goal. And then we did something extraordinary, we applauded our NHS workers. We united as a nation. I was infuriated by the lack of support, the lack of PPE and testing for our front-line key workers.
I was hoping I would eventually manage to do something meaningful, perhaps take a book or draw, but I was not yet ready. Then I eventually managed to sit under the sun in the garden, that was wonderful. How illness makes you re-evaluate tiny things. One morning, I went out for a brisk walk with Paul. I came back coughing and wheezing.
Once I got out of bed, and managed to do things around the house, I thought that was it, I’m feeling better, but then I entered another trying phase. I attempted too rapidly to do too many things and would often have to lay down and rest. I went back to online tai chi first, I was short of breath but I believe that tai chi did help my rehabilitation. I eventually went back to my kung fu training, I was doing my best, was at times fine, but then would have terrible days after, the crushing fatigue would come and go… and so little by little I realised “I am not fine”. I am not fine. This phase of lingering symptoms has lasted ever since. The cough never left me completely, a productive cough, the wheezing would come back at times, a crackling sound inside whilst breathing. I’ve had several chest infections since. And I developed another weird rash on my ankle, at times it is purple and flares up.
How can the outside world fully understand what goes on inside? I appeared fine – I was no longer bed-ridden, I had survived covid, but it felt like the virus was still in me. I was oscillating, with constant ups and downs depending on my activities.
Since I fell ill mid-March, I’ve had constant tinnitus, the right side is a pulsatile tinnitus (a whooshing sound synchronised to my heartbeat). The left side is a high pitch. Both sounds are there constantly, when I wake up, when I go to sleep. My fear is to lose my hearing – as a sound artist, imagine. I booked myself in for a test at Specsavers in August and my range of frequencies was still very good. So many people on the Long Covid Facebook support group experience severe tinnitus. I have tried to accept these internal sounds, and embrace them. This is the new me? Yes, it is the new me. My body is emitting these new sounds, they are my own soundtrack. I very quickly understood that if I was rejecting it mentally, it would drive me insane. There are moments it tightens my head, giving me a headache, it is exhausting, but I try to accept it. Am I going to stay like that? I can’t wait to see a ENT, I need reassurance that hopefully there is no damage to the inner ear. My GP reckons that the virus has attacked the nerves, and she says that it can take a very long time to heal. Dr A. is great, I am fortunate I am being followed by her, she is due to check on me first week of January. I have a lot of time for her. Will this whooshing sound in my head - synchronised with my heartbeat- ever go? I was hoping the corticosteroids would reduce the tinnitus too but it hasn’t.
Reading the messages from people on the Facebook the Long Covid support group [4], I am thankful I can walk the stairs, and have resumed my activities. But covid is not solely a respiratory issue. It triggers inflammation, it appears from a latest research that the autoantibodies attack our own immune system.[2] , thus explaining a whole range of debilitating symptoms. Reading other people’s testimonies on the support group, I have found out that some people who’ve had a similar experience to me - covid in March/not tested - have found themselves in a difficult situation: they can’t get sick pay because they have no evidence that they had covid in the first place, nor can they get their insurance - in the USA - to cover their medical bills. This is tragic.
We need more resources for long covid, we need to nurture our health system. This pandemic reflects how advanced - or not – society is: if we can’t look after each other in illness, then we are failing. The virus has revealed the weakness in our health services and welfare.
Last spring, I was dreaming of a vaccine and I very much welcome the breakthrough from the Oxford team. Yes, I am pro-vaccine. Why is it that so many people tend to forget that if we have eradicated so many horrendous diseases, it is thanks to peer-reviewed medical research?
I am training tomorrow - a one-to-one class - in the park outdoor with my martial art instructor. Shaf has tailored my training and whenever I’ve had flare ups of cough, shortness of breath, we have been alternating between tai chi and kung fu forms.
I am hoping I will finally see medical specialists in 2021. I have been wanting to write an account on long covid for months but… it has taken me a while.
Stay safe, wear a mask. I wear a mask to protect you. You wear a mask to protect me.
The anti-maskers were operating during the great 1918 pandemic, they operate today. Wearing a mask does not diminish your manhood, Paul Watson[3]. It makes us human, caring for others.
Take care
o
[1] https://www.theguardian.com/society/2020/dec/16/long-covid-alarm-as-21-report-symptoms-after-five-weeks
[2] https://www.theguardian.com/science/2020/dec/13/autoantibodies-may-be-driving-severe-covid-cases-study-shows
[3] https://twitter.com/PrisonPlanet/status/1339092502272466945