Friday 5 November 2021

My Battle with Long Covid (Part 2)

'Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.' - Robin Williams. This is one of my favourite quotes of all time and something I try to live by...

If you follow me on Instagram or have been reading my blog for a while, you might have seen that I have been battling long covid for a really, really long time. 

National Covid Memorial

Here's the first post I wrote about it back in March 2021, one year after catching COVID-19 in March 2020. Back when I wrote that, I thought to myself that surely this must be nearly over, I had been ill for a year! But no. It was far from over.  

Although my symptoms come in ebbs and flows, 19 months after catching the virus I am now just as bad as I was 6 months ago. I think this is down to daily life responsibilities and stresses that come with it and the fact that I have a rather demanding full time job, so am unable to take the rest I really need.

The main symptoms that I am still living with are extreme fatigue, brain fog, muscle and joint pain - these are the worst and most debilitating - as well as tinnitus, rashes, dizziness, heart palpitations, breathlessness and migraines. 

My symptoms are unpredictable. Each day is different and I never know which symptom is going to flare up that day. I feel trapped inside a body which was once fit and healthy, that has been ravaged by Covid.

One of my visits to St Thomas's Hospital

While the world seems to be moving on and get back to normal, there are millions of us who feel left behind, struck down by this life changing health condition. We can't see when our lives will ever get back to normal. 19 months down the line, I really do struggle to see a future where I am better, but I have to remain positive and know that, one day, I will be. 

Now don't get me wrong, I do live a good life and I am in a better position than some people who have long covid so bad that they need a wheelchair. I have amazing friends and family, I live in one of the most awesome cities in the world and visit the most amazing restaurants each week. But what people don't see is that I have to really carefully manage everything I do and pace myself well to avoid relapses. The main trigger of relapses is stress and doing too much physical or mental activity in a short space of time. 

I am so thankful to those people who have been understanding and who have helped me through this time; especially my parents, family, Charlie the cat (for being my emotional support animal!) and my closest friends. I am lucky, in my personal life, to be surrounded my people who want to understand my situation. 

However, something that my situation has taught me, is that there are so many people living with invisible illnesses who are facing stigma and discrimination everyday. Disability doesn't have to be visible to be real. It seems that there are a lot of ignorant people out there who, just because they can't see an illness, don't believe its true. 

I've had people telling me it’s all in my head. I've had colleagues laughing about long covid when they thought I couldn't hear. I've had a lot of unsolicited advice, usually starting with 'I'm not a doctor but..'. Please, if you aren't a doctor or if you haven't had a hidden illness then we really don't need your 'advice'. 

What we need is patience, understanding and support. We want so desperately want to be healthy and understood but I have noticed that so many people in this world lack even the smallest amount of empathy or understanding. You would think this pandemic would have made us better humans, but a lot of people really haven't changed. 

So many people assume I'm fine because I look fine. I can put on a face of make up, a nice outfit but be feeling absolutely terrible on the inside and people wont understand that, because to them I don't look sick. For me, and so many others like me, everyday is carefully 'managed'. And even if I'm having a good day, the symptoms are still there lurking in the background waiting to come back if I make a small mistake, like getting stressed or walking too far. 

The positive is that now more research is being done and I guess this will also help with people's understanding of other similar chronic illness like ME and CFS. 

Having this illness has changed me forever; maybe for the better though. I will never again take the small things for granted; exercise, dancing at a wedding, walking around a new city, travel.

Just after a really bad relapse

It has been a tough few years for everyone though, not just for those of us suffering with long covid. So as an active user of Instagram and with my following slowly growing, I wanted to highlight the difference between Instagram and real life. 

Like a lot of creators and bloggers, I use my Instagram and social media as a way of creating happiness. Nothing makes me happier than a delicious plate of food or a beautiful outfit or restaurant and creating colourful photos for other people to enjoy. But it does not show the harder side of my life. I'm trying to be more open and have started doing some Instagram Vs Reality posts.

We all know that social media is a highlight reel but I now know it can be extra hard for people with illness and disabilities (or anyone having a tough time) to be looking at everyone on social media living their 'best lives'. 

When the above photo was taken, I felt awful as I was just coming out of one of the worst relapses - but you can't tell, can you?? I literally had to hold onto my friend's arm just before this because I felt so faint. 

So please always remember that you can never really know what someone is going through so never judge a book by its cover (or a person by their Instagram feed!). 

Instagram Vs Reality

If you are in the same position as me, my previous post has a list of things I find helpful for living with long covid.

Some more recent things I have found that slightly help are:
  • Acupuncture - I haven't had many sessions but I think it helped slightly so far
  • Protein shakes 
  • Avoiding stress (easier said than done!) 
  • Pacing 
  • Turmeric supplements and Turmeric tea (good for helping inflammation)
  • Rest (which is hard when you need a full time job to pay for living in London!)
  • While it doesn't help you feel better, it might help with awareness and people giving you more understanding. This sunflower lanyard for hidden disabilities, discretely indicates to people that you have a hidden disability and may need more time. I hang it off my handbag when I go on the tube.

I have had lots of hospital tests including blood tests, ECG and a chest X-ray and they all came back clear. Which is super frustrating because when the doctors cant find what needs treating they can't treat it! So for now I am just managing my symptoms with pacing and pain killers while I wait for my appointment with the Long Covid Clinic which unfortunately isn't until February 2022 (which will be nearly 2 years since I caught Covid).

View from St Thomas' Hospital

If you have been in the same position as me, please leave a message in the comments or drop me a message on Instagram - I would love to hear from you! I hope by writing this, it has helped even just one person.

No comments:

Post a Comment