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Sally’s Story

Published 19/06/2020

My symptoms began the last weekend in March, even though my partner and I had been social distancing and taking every precaution. It started with awful headaches in the evening, with an aching neck and feeling hot and feverish, but I put it down to a migraine, and got through Monday working from home. Then I noticed a cough developing, and that settled it for us; I isolated myself in the spare bedroom with my laptop, paracetamol and water, my other half bringing food and drinks to the door and checking in on me. I had no prior health conditions to concern me, so at that point I was just trying to protect my other half. No testing available, so could have been flu.

Over the next few days though it got a lot worse, with diarrhoea, muscle aches and fatigue, and the characterstic chest tightness and breathlessness to boot. On Wednesday I was unable to get out of bed except to go to the bathroom, and unable to even sit up for more than a few minutes, and even those “activities” left me breathing hard. I’d never been this unwell. We called 111, who told us to call 999, who sent the paramedics, but my oxygen was ok and my fever manageable with paracetamol, so I was lucky enough to avoid hospitalisation and continued to rest it out at home. Still no testing available, so just “suspected”.

There were a couple of hours each day where I felt a bit better and watched a bit of TV, and by the weekend I felt able to help out with some dishes and cooking, and we thought that might be it and I’d be back at work soon – but come Monday (day 8) I was back in bed with severe fatigue and a burning ache in my chest and throat. Wednesday was particularly bad again with breathlessness and chest pain so we called 111 again, and this time I was referred to my GP, who talked through my symptoms and reassured me I didn’t need hospitalisation, and that there wasn’t a quick fix so I just needed to keep resting until it passed. We bought a thermometer and were pleased to see nothing over 37.9°c over the next few days, and I started to improve again over the rest of the week, until I was able to be up for half hours with sleeps in between. I slept 10hrs every night and much of the day.

After that the symptoms were the same, just varying in severity, with good days and bad days each week and no real pattern. I tried a lot of approaches to try to manage it so I could work around it, to no avail. Each week in the best moments I’ve been able to think a little more clearly, and move a little more freely (again, only made the mistake of not taking it slow up the stairs once…) but I’ve not been able to be productive more than a few hours each day even on my best days, everything takes at least twice as long as normal, even thinking, and my memory isn’t working well (I’m writing this from a diary I kept). It’s day 81 now, and I still need a lot of sleep, and I still notice how hard it is to breathe and spend a lot of time counting in for 3 and out for 3 to stay calm. I still have headaches, sore throat, chest pain, swollen glands, upset tummy if I eat much at once, instant fatigue or brain fog if I strain to do anything. My temperature still gets up to 37.7°c, and I get the occasional migraine due to my changes in sleep, diet, exercise…

My GP has been checking in every week or two, and around day 60 they referred me for a chest x-ray, ECG and blood tests to check there weren’t any complications hindering my recovery, and they all came back negative (good news, despite no answers and no quick fix!) And around day 70 or so they had stories of others with similar recovery patterns who had started to get better, and reassured me that I was unlikely to be unwell for more than 6 months in total… Again, good news – there are worse outcomes, but naturally I am keen for many reasons to ensure this recovery is a lot shorter than that! Oh, and I finally had a covid antigen test (courtesy of the symptom tracker app research project – thank you!) but at day 75 it was unsurprisingly negative (good not to be declared infectious again, though!) I’m hoping they send me an antibody test too, just so that I can be absolutely sure that’s what this was (if you’re reading this… Pretty please?)

This site has been really helpful for keeping me sane as the days rack up, thank you so much for putting everything in one place and to everyone who has contributed – I don’t have the energy to trawl the internet, and while the research is catching up it’s so reassuring to hear from others in the same boat that I’m not missing out on some quick fix or cure. There are lots of things that help, though, and I’ve worked up quite the collection of home therapies thanks to suggestions from my friends and family and some desperate googling of viral pneumonia remedies, including:

  • keeping a routine and a diary has helped me to see progress and remind me there are good days on bad ones
  • being disciplined about rest (lying down as soon as I notice exhaustion or brain fog – and it turns out TV doesn’t count!?)
  • taking paracetamol and ibuprofen as often as possible, at staggered times (I haven’t been pain free even then, yet)
  • avoiding physical and mental stress (no lifting heavy things, not panicking when I’m breathless – easier said than done of course)
  • avoiding eating much at once or when you’re exhausted (this is a trigger for my diarrhoea and fatigue)
  • avoiding steam, especially hot baths (this is a trigger for my breathlessness)
  • drink ginger tea every day (this helps with pain, breathing, fatigue, everything really)
  • taking Strepsils Extra and Jakeman’s Original for my throat and chest pain (anything with menthol and/or eucalyptus seems to help)
  • inhaling Vicks and essential oils (lemon myrtle in an oil burner has been particularly good for my breathing, plus Vicks at nighttime)
  • staying hydrated and eating lots of fruit and vegetables, especially kiwi and citrus (I’m also taking a multivitamin supplement with vitamin D, just in case that’s not enough!)
  • getting some gentle exercise each day that I can (stretches, short slow walks, breathing exercises)

I’ve just had a good few days in a row, so fingers crossed this is the beginning of the end, but regardless I’ve learnt to make the most of every minute! I’ve also learnt to ask for all the help I can get – I am just so thankful for all the support I’ve had and continue to have from my partner, my family and friends, my manager at work, websites like this one, and of course the NHS.

Recovery Update 30.11.20 – post 34 weeks

When I got sick in March I was feverish, breathless and dizzy, aching all over, had excruciating headaches and diarrhoea. Then I started to feel better and thought it was all over, but it was just the beginning of a was is so far a 34 week recovery and I’m nowhere near normal yet.

At the point of my first update after 12 weeks I was still experiencing debilitating fatigue, breathlessness, dizziness, excruciating headaches, chest and throat pain, muscle aches, gastrointestinal symptoms, and essentially would have thought I had bad flu if I woke up like that. I was only able to be up and able for a couple of hours on good days couldn’t get up at all on bad days. I took a lot of medication to try to manage my symptoms but still had to spend most of my time lying down.

However, now after 34 weeks I can manage about 30 minutes of gentle exercise each weekday including some yoga, a short walk and some strength building exercises, and with that comes the energy to do 5 hours work and be awake all day.

This is all thanks to the advice from the RICOVR program here:

This handful of short videos contain all the ingredients of my recovery plan – and it’s working!!!

It helped me to prevent the boom and bust pattern and settle into a routine of being up for about 2 hours a day, which I could then build on. I “challenge” myself every Friday, rest over the weekend (I still take ibuprofen on these days), and enjoy a slightly higher baseline the following week. I can now manage about 30 minutes of gentle exercise each day including some yoga, a short walk and some strength building exercises, and that generates enough energy for 5 hours work.

It’s hard, hard work and rest days hurt. A lot. It’s hard to hurt so much on the weekends and in the evenings and basically need to sit or lie down. But every week I see progress, and every bit of exercise generates extra energy so that I will eventually return to normal activity during the week and then start to reduce my rest over the weekend. It’s that trajectory that helps me (and my partner, and my work, and my family and friends) to hang in there!