My Battle With Long Covid (Part 1)

Tomorrow marks the 1 year anniversary of when I got really sick with Covid-19..

Living and working in central London, I assumed that I was going to catch it but I had no idea how bad it would be. Lots of people at the time were saying it was like the flu with a cough and I chose to believe that. It is definitely not like the flu, or at least it wasn't for me.

As the virus quietly made its way through our office, we all got sent to work from home, thinking we would be back to normal in a few weeks. The day after we were sent home, I tried to go for a run and it was the hardest thing ever. 

The next evening as I shut down my laptop, it hit me like a tonne of bricks. All of a sudden I was experiencing absolutely unbearable muscle aches. As the night went on I developed a fever and chills, I was freezing cold and couldn't get warm. I developed a headache and a terrible cough throughout the night. Over the next few days these symptoms got worse and worse, to the point where I couldn't breathe properly. I couldn't move off the sofa for more than a minute to get a drink or some ice cream. I lay on there for 4 days straight, unable to breathe properly, unable to do anything, even shower. I couldn't taste or smell anything either, but that was the least of my problems. 

We had just gone into the first national lockdown and I live alone in London so it was pretty scary to be on my own and that sick. None of my friends and family could come and help me. At that point, even the doctors couldn't help me. I tried calling 111 several times but they couldn't do much to help and told me basically to only call an ambulance if my lips turn blue... No one really knew much about this virus back then. It was scary, it felt like the world was falling apart around me and all I could do was lie on the sofa and try to survive.

Before I got sick I had been shopping so thankfully I had enough food but I didn't have any paracetamol. If you remember at the time, people were panic buying all the paracetamol and toilet roll. I had been to 4 shops looking for paracetamol before I got sick, just in case, but there was none to be found. The pain in my muscles was unbearable but thankfully I had some co-codamol which helped and my Mum sent me some paracetamol in the post. 

Now I would love this story to end with, 'and then I recovered and lived happily ever after' but that is not the case, that was just the beginning.

Before Covid-19, I was a fit and healthy 33 year old who went to the gym three or four times a week to run on the treadmills, I did yoga regularly, I ran up and down the escalators on my commutes across London and I walked from Kings Cross to Angel and back everyday. I went out after work, did lots at the weekends. To say I can't do this anymore is an understatement. 

After getting sick in March 2020, it seemed as though I was starting to recover. I started trying to run again but it was really really hard. In April and May I tried to get back to normal a bit and then in June, I went to stay with my parents (my support bubble) in Sussex for the rest of the summer. 

One day in June, I was out running and then this awful chest pain hit me and my chest became so tight it was hard to breathe again. I called the doctor and they told me to go to the hospital because I could have something seriously wrong like blood clots in my lungs. I went to the hospital and the doctor listened to my chest and told me it was fine and everything I was experiencing was probably anxiety...

I wish it had just been anxiety! Over the next few months my condition got worse. Although the chest pain and tightness seemed to easy off, only happening when I am at my worst, I developed really bad fatigue. Like, not just exhausted, beyond exhausted. Falling asleep at my desk at work exhausted. Not being able to cook my own dinner exhausted. Having to choose between washing my hair and doing the washing up exhausted. 

In September 2020, my new doctor started taking it very seriously. She sent me for tests at Kings College but of course they came back completely clear! The only thing they showed was high levels of antibodies. With nothing particularly wrong and no clear reason for the fatigue and pain other than having had covid, all we could do was manage the symptoms with pain medication. But this doesn't cure me, it just means I can just about cope with the condition on a day to day basis. I have to be really careful how I use my energy as I only have a small amount for each day.

ONE YEAR later, I still have this fatigue. The exhaustion comes with really bad muscle aches, joint pain, headaches, heart palpitations, memory loss and brain fog. At its worst I can't remember words, I have problems with my vision, freezing cold feet, ringing ears and even skin problems. And of course, having a chronic illness like this doesn't do my mental health any favours! It is hard to feel positive when you wake up every single day feeling dreadful. My mental health had been deteriorating prior to catching covid for a few years due to other issues, and then during 2020 it felt like my body was deteriorating too.

Thankfully, with the help of my doctor and friends and family, my mental health is starting to improve. But I have had several mental & physical relapses over the past year. Sometimes I start to get better and can have an almost normal day but then the fatigue gets worse again. I have learned what makes it worse and that stress is a big trigger to relapses. I have to eat 5 times a day to keep my energy levels up enough to do my work, which is not ideal when you can't exercise. I manage some walking or yoga some days but I am a long way off being able to run again or commute 5 days a week. I know there are people out there that have it much worse than me, so I am grateful that I am still able to do things and work from home.

The past year has been so hard because I caught covid early on, no one knew about long covid. They still don't know much about it. But hopefully as time goes on we will learn more and recover. The symptoms are debilitating and it is very similar to chronic fatigue syndrome so hopefully we can learn from that. It has been pretty worrying not knowing how or when I would get better.

For anyone reading this who is also dealing with the same condition, here are my tips for dealing with my long covid symptoms:

• The doctor gave me this website which has advice about covid recovery.
• Realize that mental exertion can use lots of energy.
• D-Ribose Powder - I don't think there has been anything proven with this but I take some D-Ribose powder when I'm feeling particularly weak or want to go for a walk. I read that it has helped chronic fatigue syndrome patients and it does help ease my symptoms a tiny bit. 
• Use your energy wisely - don’t waste brain energy spending hours scrolling through social media.
• Cut down on alcohol. When you wake up feeling s**t most days, why add to it with a hangover?! I haven't had a drink since new years eve. Alcohol also makes your mental health worse and compromises your immune system.
• Don't have too much caffeine. A long covid symptom can be disordered sleep and caffeine just adds to that. Try things that create natural energy such as bananas.
• Daily naps. When you feel exhausted - nap! Your body needs it. I believe sleep is the answer to everything! I have nap most days at lunchtime.
• Eating at regular intervals but avoid sugar and fatty foods. Eat healthy foods, lots of protein and foods high in energy, such as gluten free oats and bananas.
• Listening to your body - if it is telling you it needs rest, then rest. 
• Don't be afraid to ask for help. Ask someone to do that chore for you or help with your work. I am lucky to gave my parents to stay with when I need help. 
• Baths. If you have a bath, then a nice warm bath can help the muscle aches. 
• This long hot water bottle is the best thing for pain. You can wrap it around you and it covers the length of my achy legs.
• When you aren't doing much activity a little gentle yoga can help stretch out and strengthen your muscles. 
• Pace yourself and ration your energy. Know that you only have so much energy to use (see also Spoon Theory).
• Do nice things when you do have energy. My doctor told me how important it is to not use all your energy on work or housework. It is important to see friends and do nice things that you enjoy. If you don't, your mental health will deteriorate.
• Gratitude - try keeping a gratitude journal. It will keep your spirits up and keep you in a positive mindset, which is what you need to get better.

Even though this year has been bloody hard, it hasn't been all bad. Even though I've been poorly, I got to spend all this time at home with my parents and the cats during the summer and the second and third lockdowns. I have got to spend time (from a distance) with my friends in Sussex who I wouldn't normally see very often. Plus I have managed to have some fun times in London in between lockdowns and I have even managed to start up this blog again!

If you have also experienced long covid, I would love to hear from you - leave a note in the comments!