What's going on with me and this long covid

Hi Everyone.  It’s only been a month or so since my last post, but it feels a lot longer.  Since then, I’ve gotten emails asking how I am, several cards in the mail (thanks for the stickers Bobi) and my friend Diana sent me some (very pricey) herbal supplements to help with things like anxiety and inflammation.  Thanks very much everyone, your kindness and well wishes have meant a lot to me.

When I last wrote on here, it was the fourth week of May and after 5 months of living with long covid, thought I was finally on the road to recovery.  I returned to the senior center a couple times, and went on that wonderful lunch outing at Red Lobster.  The day after that lunch, I spoke to my friend Diana on the phone (who was in Utah, attending her son’s wedding) and it was our first conversation in months that didn’t include long covid.

A couple days later, the weekend arrived along with a pretty serious relapse, and I’ve pretty much been in hiding since the first of June.   Lots of cranial pressure and burning sensation in my head and face, aching in my neck and jawline, cloudy thinking and difficulty concentrating, tremors in my hands, constant fatigue.

I try to get outside daily for a 10-15 minute walk around the block, but always return with the left side of my face inflamed and a desperate need to lie down for a couple hours.  (Sunlight and neurological long covid do NOT mix.)

Aside from those walks, I haven’t gone anywhere, seen anyone, done anything.  I talk to my friend Diana several nights a week on the telephone and that’s it.  She has been a wonderful friend and I’ll be forever grateful, but to say I’m still down about things would be an understatement.  Last year I had a wonderful summer, attending museum and restaurant outings with new friends I’d made at the senior center, visits back home with my sister Shawn and her husband Jim and my niece Sophia, a couple of fun weekend outings in West Virginia with Diana. 

I was hoping for more of the same this year and that’s clearly not happening.  I love and miss everyone.

I’ve been reading and watching everything I can find about long covid, and feel like I’ve learned so much.  A couple nights ago I watched a long interview with Emma Samms, a British actress who wrestles with the condition and talked about one of her lesser symptoms, “always whiffing diesel fuel”.   That knocked me for a loop, I’ve been telling Diana for months how I’m always smelling oil or a type of fuel.

But lately I’ve been trying to focus on recovery stories, and recently came across one man who considers himself 90% recovered and how he believes this condition works.  He says you have to break it down into 3 phases:  the first phase lasts 8-10 months, a roller coaster of anxiety, pain and relapses.  You think it will never end.

(I guess I’m still in the first phase.  I’m in my 7th month, and hopeless is how I often feel.)

He says Phase 2 is next, lasting 5-6 months and there are still relapses, but they’re infrequent and you will begin feeling real hope again.   Phase 3 is almost a full recovery.

He’s very popular on youtube, comes across as highly intelligent and his 3 phases timeline make a lot of sense to me.  I also read a recent study by the NHS, who compiled statistics for 750 people with neurological long covid like myself, and said the average duration was 321 days.  That’s a little over 10 months time.

Right now I have no choice but to hope and believe that old saying “Time heals all wounds” to be true.   Thanks for letting me share all this, and thanks again for the well wishes.  It may be awhile before I blog again, I want to make a real recovery and get some of my old life back again.   Take care.