Day 221 of #LongCovid and I haven't been able to post updates on here for a few days as my relapse was really debilitating

Here's a thread on relapses, resilience, and dreams #covid19 1/n

On Thursday, I was incapacitated the entire day, body and brain in total and complete shutdown. Was unable to leave the bed. Brain was unable to do anything. This has happened before 2/n

The symptoms kick in around 30 mins after waking up and start to ease after 10pm at night, but essentially during the day, they are there and are constant 3/n

On Friday and Saturday, body and brain felt exhausted but not as bad as Thursday. New symptom appeared, had trouble standing up and was unable to walk. So had to crawl on hands and knees from bed to bathroom for example. Again, this has happened before 4/n

This morning, Sunday, I feel completely normal, in both brain and body.

I was desperate for fresh air and was able to walk 4 mins round trip to buy a coffee. Hooray

My natural way of being is back (bored and restless energy) but will be taking it very gently today 5/n

It's weird how the symptoms can switch on and off for no reason. One day you're struggling to do anything and the next day, it's as if the symptoms were never there 6/n

I find that people I know are generally ignorant about post viral illnesses (including myself before I got sick) - no matter how much I explain to friends and family about pacing, or relapses, or the symptoms themselves, they don't seem to understand 7/n

Family and friends are very worried when I relapse, but I'm used to this disease now and the relapsing-remitting nature of it. I don't see the point in complaining or worrying, those actions aren't going to make me better and are a complete waste of my precious energy! 8/n

On Friday night, I took the last 2 pills of my 6 week high strength prescription to address my Vitamin D deficiency. Getting my Vit D levels back to normal didn't prevent this relapse. GP told me some patients don't notice any impact of having normal Vit D level again 9/n

GP suggested I resume taking 1,000 IU of Vitamin D with over the counter supplement, which I will do. However, taking that supplement for the first 4 months of my Long Covid didn't make any difference in terms of preventing symptoms/relapses 10/n

It's good to hear that more resources are being allocated to #LongCovid but it would be more inclusive if resources were allocated to ALL patients living with long term symptoms after a viral infection, e.g patients with ME/CFS have been ignored and neglected for years 11/n

Many of the symptoms of #LongCovid overlap with ME/CFS. Imagine how things would have been different today had society taken post viral illnesses seriously in the past... A useful post by @Plutonian_sword HT @richardvallee https://www.theunion.com/opinion/columns/jonathan-hawkins-covid-19-and-chronic-fatigue-syndrome/ 12/n

My experience of #LongCovid has been rather horrible but I do feel I'm quite fortunate. I wake up every day and count my blessings. There are so many patients whose symptoms have been worse than mine and also patients who have been living with similar symptoms for decades 13/n

Keeping dreams alive is important. I dream of making a full recovery, one day in the future, whenever that might be.

I rarely drink alcohol but I have a mini bottle of Spanish champagne that I will open the day that I am fully recovered /end