Sarah Powell: My Long Covid story (with BSL video)

I am writing this to raise awareness of Long Covid. There is growing evidence that coronavirus is not just a short term illness, more and more people are experiencing this as a long term illness lasting several months or longer.

Watch a signed version of this article below, by Sam Calder-Bray:

Statistics are patchy as its all new, but some research says around one in ten people with Covid still have symptoms 12 weeks later, and over 150,000 in the UK may have had Long Covid.

Back in March, when the pandemic started and crucially before the lock down, hand washing and use of masks, I became aware that I had completely lost my smell and taste, I could not smell my home made brownie.

It was so strange, so different than previous colds as it was a complete loss of smell. At the time, loss of smell and taste was not seen as one of the main symptom of coronavirus and, as I was not hospitalised, I was not tested for coronavirus. I felt fine during this episode.

However few weeks later I started to get bizarre symptoms – my tongue felt like it was burnt, like I had been licking acid. I kept going back to the GP via online texts as there were no face to face appointments (I will say more about my experiences with my GP later on) who then prescribed antibiotics (I ended up having three lots of antibiotics before we both agreed to stop as it was not making it go away).

Over the next few months I started to get more symptoms. I will list some of these, as there were too many to list – I think I had around 37 symptoms.

These included: muscle twitching, smelling burnt onions, smelling cigarette smoke (I realised later on I was getting phantosmia – false smells), vivid dreams, joint pain, pain in my lungs, gastric reflux, memory fog (such as not knowing what slippers were called, I used the word ‘house shoes’), heart palpitations and fatigue (it was so bad).

It was a very lonely time as I did not know what was going on. My GP did not know and Google didn’t help either (!). I could not ask my friends about it because at the time no one else was infected.

As time went on, another person was infected so we were able to share our experiences and support with each other, which helped a lot. Through this, we discovered an excellent Facebook group called Long Covid Support Group.

This was a godsend for us, seeing other people having similar experiences, sharing the same frustration with the medical professionals as they were dismissive to our issues at times. Plus I finally had a name for what I was experiencing – Long Covid!!

This group helped me to go back to the GP and to keep pushing for tests which helped as it was discovered my vitamin B12 was extremely low as well as other issues so steps were taken to rectify this.

In September my symptoms and pain were extreme and I ended up in hospital for urgent tests and time off work to recover from it. My employer throughout all this was excellent and very supportive, for which I am grateful (as many people with long covid struggled with their employers).

One positive outcome from the hospital trip was that the doctor suggested I go for a test for antibodies. I was unsure about this as had heard stories that people did not have any antibodies (there is some evidence that the antibodies doesn’t stay in your body forever and there has been cases of people catching coronavirus twice).

When I saw the positive result of antibodies, I was actually in tears, finally some kind of validation that I had indeed been infected with coronavirus – most likely in March. Since then the attitude of the medical professionals has changed and I have now been referred to a Long Covid clinic.

It is now several months later and I am still experiencing many symptoms, but with a cocktail of medications, multi-vitamins and supplements, it is more manageable.

I have had to stop running and have been told not to attempt it until next year. I cannot multi task, I have to pace myself, otherwise I will be hit by severe fatigue and pain. It has been a very frustrating time and I am focusing on the now, not the past or future as I do not know what the future holds.

As a Deaf person, obviously there were many challenges to this journey. My contact with the GP has been excellent (as they are Deaf aware) – the use of Ask My GP app meant I was able to contact my GP via the app and this was very smooth with no issues.

On the rare occasion when I saw my GP, I used BSL Health Access for communication which was a godsend as obviously removal of masks is not allowed (I dread to think what would happen if BSL Health Access was not around).

Sometimes I had to go to a different venue for urgent assessments and each time I attended to these appointments, there was an intercom which obviously was inaccessible for me and despite pressing the bell several times, they would not come to the door! I had to call them via Text Relay to explain that I was here and that I could not hear what was being said. Eventually they opened the door and assessments were completed.

The worst thing for me (and for other Long Covid survivors) was that many tests were coming back as normal, therefore we have been dismissed/gaslighted by medical professionals (who would downplay the symptoms or used anxiety as a reason for our symptoms).

I had to keep going back to them for answers, especially when the pain was becoming more severe. I have noticed there has been no information in British Sign Language regarding Long Covid and it is a challenge to provide this information as there are so many effect it has on the body – the organs, the digestive systems, musculoskeletal pain and of course the psychological impact.

Slowly but surely, the medical professionals are now recognising Long Covid, and recently the Government has announced 40 new Long Covid clinics will be set up in England. This is not enough when you think about how many people are being infected and how many people then develop Long Covid.

So if you get coronavirus it is so important to rest and take it easy. If several weeks later you notice bizarre symptoms, make sure you keep a record of it and keep seeing your GP if things get worse.

Sarah Powell contracted Coronavirus in March 2020 when little was known about the virus. This is her journey and how it evolved into Long Covid. Sarah works as a clinical psychologist for SignHealth. Her hobbies includes running, eating and nature.