It has been a while since I posted about my Long Covid journey. In March 2020, my world turned upside down. I went from travelling every other week with presenting, voiceovers and filming commercials, to almost bedbound for months. I lost my voice for three months, had ongoing respiratory issues and then, in August 2020, developed heart issues. Unfortunately, those ‘heart issues’ included several suspected minor heart attacks.
All the physical issues continued for the next year, though I made some improvement in the later part of 2021.
And then I got a chest infection at the end of 2021 and, in March 2022, I got pneumonia.
I really tire of talking about my health. Sigh.
(Just to interrupt this litany of depressing news, *spoiler alert* I am doing significantly better, but please read on.)
Though I was getting further help in a Long Covid clinic through the NHS and also with a private Long Covid specialist, it seemed my body (especially my lungs) couldn’t just ‘roll with the punches’. Doctors did not have answers for my ongoing symptoms, especially my respiratory and vocal issues.
In May 2022, I saw a private respiratory specialist who basically said, ‘Covid turned respiratory medicine on its head. I can’t help you and your best bet is to get into research studies.’
But through my NHS Long Covid clinic, I put in a request to be in any respiratory research studies.
It took several rounds of applying for studies before I qualified. It was for those of us who were never hospitalised, have done respiratory physical therapy but still have ongoing breathing issues for a year or two (or more, as in my case) AND also have had normal x-rays and lung function tests.
I went through the interview and they scheduled my day of tests.
And then I got Covid again in June 2022 and I had to delay the research for another three months post-Covid.
Yet, a few things internally changed for me before this round of Covid - I learned how to be ill.
That sounds odd to say (but someone has even written a book about it).
I have learned on my recovery journey that fear and anxiety only fuels illness.
Through daily meditation, breathing, neuroplasticity (retraining the brain when stuck in anxiety ruts), and journaling practices, I chose a deeper way of peace. I took the time to rest, hydrate, do loads of self-care and, most of all, not ‘push it’ when I felt better.
And I continued to use the ‘artistic’ side of my brain with watercolours and releasing anxiety and concerns through my journaling practice—these are things I had been doing on an almost daily the past year and were key for me when I felt really poorly to help my mindsets.
Two and a half weeks post the second infection, which felt like a very different version (much more mild that didn’t affect my lungs) than the first time I got it, I woke up with more energy than I have had in over two years.
The dreadful post-exertional malaise episodes came to a halt, brain fog lifted and the chronic fatigue dissipated. It was shocking and probably came down to a few things. Most likely it was combination as Covid may have reset my immune system (theory), my holistic lifestyle finally kicked in, a few medicines I’m taking did their job and I had many people who had kept me in their thoughts and prayers.
Since this summer I have improved up to 90% because of a few things. First, a consistent low histamine diet because of mast cell activation where my immune system went crazy post covid.
I also take prescription antihistamines, which were especially helpful over the summer hay fever months. I’m on two prescription mast cell stabiliser medications and this summer I started a controversial medication (LDN) which stopped the joint aches and I believe possible the awful chronic fatigue post-exertional malaise.
But the lungs still continue to be a lingering issue. If I do anything like walk up an incline, climb over one flight of stairs, do push-ups or sit-ups or any kind of exertion, my lungs ‘flare’ up. This leads to a tight chest, breathlessness, upper lung discomfort or pain and vocal distortion.
Which sucks if you are a voice artist. Despite what my friends like to say in comfort, ‘husky’ really isn’t THAT needed in the VO world.
Two Research Studies Regarding Long Covid and the Lungs
In mid-October of this year, I spent the day at the University Research area of one of the local hospitals. I'm in two national research studies partnered with the University of Sheffield (Oxford and London Imperial College) involving specialised tests not commonly available for the lungs. I took vats of blood, did every imaginable breathing test, did a mild exercise test and almost passed out, and did some weird finger probe lung thing that even the research docs who were with me knew very little about.
After an initial CT (that had to be ‘clear’ in order for me to proceed), I spent over an hour in the MRI machine strapped in and had to inhale gasses that made me feel a wee bit high for about 10 minutes, obviously the most enjoyable part of the day.
Since then I have found out they discovered no huge abnormalities on the 'standard' tests but they can’t tell me if they found ‘interesting’ items in my tests done for the actual research studies. They will let me know if I will go back as soon as three months from now (if they find ‘interesting’ long covid findings) or a year from now to repeat the tests. No, it won’t give any answers in the immediate (and definitely no treatment options), but it is one step further to seeing what is really going on that normal tests are not finding.
So what now?
These days I am doing part-time freelance work as I continue my medications, diet and pacing while I slowly (I mean slooowwwwly) build up fitness without flaring up the lungs.
I also am excited to launch something that redeems some of my time over the last few years of being so ill with Long Covid. I’ve combined both of my two daily practices: watercolours and journaling.
On Amazon (especially in the UK and US) from mid to late November, I have a series of journals and sketchbooks with my original watercolours that wrap around the covers. Watch this space as I will start posting links on all my social media when everything is ready by mid-November 2022.
And if Long Covid has affected you, I’d love to hear from you. Over the last two years, I’ve received messages from all over the world from individuals who saw me or heard me on the news in the UK or read my blog posts. I hope I can provide some encouragement, as this is still a relatively new and unknown condition.
Here is a sneak peek of what I will release in the next few weeks!