Thread by @ManeeshJuneja

Day 167 of #longcovid - I seem to have had an array of brain-aches since symptoms began. Sometimes, it's a feeling of pressure on the brain, other times it's like a stabbing pain, and this morning it was just a regular pounding headache from the moment I woke up 1/n

There is nothing that works for these brain-aches, and my neurologist advised against taking pain killers as they can make these particular post viral brain-aches worse. I couldn't do anything this morning due to how uncomfortable my brain felt 2/n

Over a period of 7 hours, I lay down and closed my eyes, then walked around the house feeling like a zombie, then had a short nap, and eventually the brain-ache seemed to subside enough for me to participate in a scheduled webinar this afternoon 3/n

However, just being on the webinar for 1 hour (my speaking time was 5-6 mins in total) has left me feeling rather exhausted and my brain-ache has now become worse. Sigh. Time to lay down and close my eyes again and give my brain a rest 4/n

Each day of #longcovid is so unpredictable, even if you are doing your best to rest a lot and eat healthy and think positive thoughts. It really does make it challenging to "be there" for anyone relying upon you (work, family, friends) 5/n

If you're an employer and reading this thread, if any of your staff are living with #longcovid, please be aware how challenging the illness is to live with and that given how the symptoms are often outside of one's control, please do your best to show compassion /end

So my brain-ache has changed this evening. So early evening it changed to feel like a truck was hitting the front of my head, and then another truck was hitting the rear of my head. Don't be alarmed if you're new to my #longcovid journey, this is a "normal" for the illness 1/n

Then it kinda got quite bizarre. Later in the evening I felt spaced out in my brain, and as I was heating up some veggies in the microwave, after I opened the door, I couldn't think or remember what I was supposed to do next 2/n

I stood in the kitchen for a while, not sure of what I had been doing nor what I wanted to do next. A family member noticed I was acting strange and helped me figure out what I was trying to do. Lots of confusion tonight, which thankfully has started to ease up 3/n

This acute confusion/sudden memory loss has happened a few months ago out of the blue and afterwards I had a brain MRI (normal) and the neurologist who examined me (and ruled out certain illnesses) put it down to "post viral syndrome" 4/n

Anyway, it could be worse. There are other long covid patients (and other patients in general) having a much harder time than me, so I always appreciate what I have, no matter how awful I seem to feel on any day 5/n

I have 15 years experience of working in clinical research, I have many friends who are clincians, I have a relatively high level of "health literacy", I wonder if #longcovid patients with a much lower level of health literacy have enough support when symptoms become frightening?

Not everyone wants to share their #longcovid patient journey on social media (either publicly like me) or in an online patient group. How many are suffering in silence, especially if their doctors tell them it's just anxiety? How do we find a way to hear everyone's patient story?