October 2019 vs October 2020. Today marks six months since I got sick with #Covid19. Pre-covid I was a fit and healthy 27-year-old woman. I used to cycle to work and attend two hours of dance classes 5/6 times a week. A thread on what I've learnt so far

In April 2020 my #Covid19 started with a sore throat, my chest and stomach felt hot enough to cook an egg on and I had a pulsating headache. I thought an endorphin boost would help so that night did a zoom dance class followed by a yoga class. Covid doesn't like that.

Within three days I’d become short of breath at rest. It felt like I’d been running. I went to bed that night and didn’t wake up for 21 hours. As the days went on I had a dry cough and lost my sense of taste and smell. Something wasn't right.

Week 2 - week 4 I felt like I was suffocating. For two weeks. I had a “mild case”. I couldn’t stand up in the shower and grew a dreadlock at the back of my head.

I was in regular phone contact with my GP. They had no idea what to do but they listened. An ambulance took me to hospital around week 3. The doctors asked why I’d stayed at home this long? I was hooked up to an IV drip, monitored and then sent home.

Week 5 I found the @long_covid Support Group on Facebook. I didn't know anyone else who had #LongCovid. It was a dark and isolating place. They've supported me through some really horrible moments. If you need help you can find them here: http://shorturl.at/ktJMW 

In the middle of month two I started a phased return to work from home. In hindsight it was too soon but I was desperate to return. My employer was incredibly supportive and still continues to be, I know I’m in the minority.

I struggled with my speech, my sleep, the pain. I was so over talking about how sick I was and just wanted to get back to “normal life”. It was like being stuck in someone elses body. No one had any answers they just had lots of "hope" that I would get better.

And I did start to feel better. My walking increased and I felt well enough to do 15 minutes of Yin Yoga. I was so excited about getting better that I started a recovery Instagram in June. It was a cathartic place to document my activity and treatment: https://www.instagram.com/talya.varga/ 

That feeling didn't last for long. At the end of month three I crashed again. The shortness of breath returned, my throat was sore, chest was tight, I had a fever and a pulsating headache. Do you remember that scorching hot weather? I sat in a thick fleece and slippers.

I was so determined not to give up but in reality was doing my body more harm than good. The GP sent me to A&E to check for blood clots. My tests came back ok and again the A&E doctors said *come back when things are worse*.

The government told me that this was “just the flu and I would be better after 2 weeks”. At this point I’d hit a physical and mental wall. I was broken. Why was I still sick? Why was I failing at getting better? Why does no one have an answer for me?

We have to improve #Covid19 messaging and stop putting the blame on patients. I was so numb. My hat goes off to anyone who has been sick for a long period of time and had to attempt to navigate our complicated health system.

We throw around #mentalhealth phrases like “its ok not to be ok” but when it comes down to it you don’t have the toolkit to deal with not being ok.

My friends and family were great, they checked in regularly but they couldn’t understand what I was going through which made communicating with them really hard and made me feel even more isolated especially when they joked that "this was really dragging on".

I tried all sorts of diets: gluten-free, dairy-free, sugar-free, alcohol-free, vegan, intermittent fasting, low carb. Did they help? No. I just had to ride this out. Stop fast-tracking my recovery and go back to the basics. It took 5 months to realise that and lots of rest.

Around month 4 I started getting neurological symptoms which meant the left side of my body went numb and I had pins and needles. The sensations moved to both legs. Then I struggled with weakness in both legs. I was having to use my arm to pull myself up the stairs.

My #LongCovid symptoms were so severe that in the last six months I have been tested for cancer, MS and lupus (they all came back ok). The doctors also ruled out asthma, pneumonia and blood clots on multiple occasions.
My triggers? My period, stairs, stress and heat.

Last month I crashed. I had a new sore throat, muscle aches, fever and was sleeping 12+ hours at night. I couldn’t get out of bed. I was signed off work and told to rest. Ten days later my breathing got bad again and I had to go back to hospital.

Most of this month people have had to care for me. I really hoped that I would be bouncing out of bed right now but I’m happy that I can breathe. There isn't a cure for #LongCovid all you can do is rest, up your fluids and take paracetamol.

If you're lucky enough to have access to private health care you can get tests and treatment. NHS? You have to wait months if not years. This has to change. People with #LongCovid need rehab and research now.

So far it looks like the only organ affected is my heart. I'm now on medication to lower my heart rate which is helping a lot. I've also been prescribed medication to help with my insomnia. Next week I will be taking part in the @PerspectumGroup #Coverscan research trial.

How can you help? If you've got #LongCovid download this app: http://peoplewith.com/  and help us #CountLongCovid

Media pals? Keep writing about #LongCovid your hard work this summer means we're closer to getting research + rehab. If you're a friend? Send funny memes. They make my day a bit brighter.

I’ve learnt to live with #LongCovid for now and if I’m back to full health by October 2021 I’ll be happy. Until then life will be scaled back and will involve a lot of pacing. I'm going to focus on getting physically and mentally stronger.