There’s a light at the end of this long covid tunnel

While the world around me has been abuzz with Ukraine, Kamala, Tim Walz and Donald what’s-his-name, I’ve spent most of 2024 feeling detached from everything.  (I didn’t even know about Joe Biden dropping out of the presidential race until my friend Diana told me—and she avoids the news and is the last to know anything!)

It feels like I’ve been hunkered down in a long, dark tunnel but I’m finally seeing some light at the end.  It’s been a week since the tremors in my right side ended, and the rotten tension headache I’ve had constant for 8 months quieted down greatly 4 days ago.   

I’ve still got a ways to go.  Every muscle in my body aches, making it painful to walk; I move slower than a 200 year old sea turtle on land.  My face still hurts with pin-pricks of pain (like I slept face down in a rose bush) and just going downstairs to get my mail or getting in & out of the shower zaps me of all my energy.  I need to lay down after doing both.  I’m already sleeping 11-12 hours a day as it is.

But I know things are headed in the right direction—I’m finally able to wear my eyeglasses again too.  For the longest time, just having them on my face caused too much pain.  I’m sorry I wasn’t able to keep up with others blogs or with online friends.  This is the first time I’ve been on my laptop for more than a couple minutes in weeks.

Back around mid-July, I developed strong burning sensations in both my hands and in my face and mouth.  I contacted UPMC (my insurance provider) and they said I probably needed to see a neurologist.  Then they informed me one wouldn’t be available until late October to mid-November.

A week later, I downloaded the e-book “Final Exit” from the Internet Archives, on the various methods people have used to end their lives.  It was a frightful read but I was getting close to throwing in the towel.

I contacted UPMC again and told them that.  They arranged for me to meet a neurologist in two days time via Tele-Health, who put me on a six month prescription of 25-50mg Nortriptyline and recommended I begin taking 1000mg of N-acetylcystine (NAC) for inflammation as well, Vitamin D3 tablets daily and to avoid any exposure to sunlight.

She told me it could take 2-4 weeks for the Nortriptyline to take effect, and said it doesn’t help everyone, but several days after taking it I DID notice that drop in my orofacial pain so who knows. 

My face looks like I was in a car wreck—my mouth droops on the left, my eyes are sunken in and I’ve got heavy lines running down both sides of my face.  There’s even an online forum for ‘Covid Long Haulers’ with one discussion titled “Will I get my old face back?”   People who have fully recovered say yes, but it could take a year or more. 

Are you familiar with that quote “what doesn’t kill you makes you stronger”?  I’m sorry, but I think that’s a load of horseshit.  The other night I was looking at my blog from this time last year, at all the outings and road trips and visits with family & friends.  How did I manage to do so much?  I can’t imagine being that active or social today. 

Believe it or not, there has been a silver lining here.  Since January, I’ve lost 44.6 pounds.  No diet or exercise, just 9 months of being a nervous wreck.  I hope I can manage to keep most of it off.

Well, that’s all I have for now.  I wanted to thank everyone again for thinking of me and all your kind words.  I was going to wait until I was fully recovered before writing again but missed my blog.  Thanks for reading and talk to you soon.

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.

A tasty outing at Red Lobster, and a surprise or two along the way

A couple days ago, the Senior Center had a lunch outing planned for Red Lobster.  I had a couple good reasons for going, no matter how my noggin was handling the long covid:

1. I haven’t seen Elaine, Claire, Rose or Margie (they don’t frequent the center, only go on restaurant outings) since my last outing on February 9.

2. I’ve never been to Red Lobster, and with their recent bankruptcy, I may not get another chance!

That’s Rose in the yellow & blue striped nautical sweater, more on this special person shortly

After we piled into the Access shuttle, I began feeling that familiar pressure building up in my head & sinuses. 

I muttered “Do whatever you want, I’m still going” and Margie turned around in her seat and said “Are you behaving back there?  I hear you talking to yourself!”   It was funny, but when you’ve been living like a hermit for 4 months and only talking to 1-2 persons on the phone, you tend to get a little eccentric.

Anyway, this was one of my favorite lunch outings ever.  The restaurant seated us at a humongous round table, so I got to enjoy the company of everyone, with Evvie by my side.  The food was delicious (they kept bringing out baskets of hot Cheddar Bay biscuits) and no lie, I ordered a Pepsi (my first one in years) and it tasted like the best one I’ve ever had.

I was a little surprised at all the drinking—Dennis and Paul polished off 6 Alabama Slammers and red wines, Rose had a draft beer in a glass that was 12” high and Evvie had a pretty potent Seven Seas margarita; these people don’t mess around!

I only managed to get a couple usable photos, my Motorola smartphone doesn’t do too well in the dark (but a new phone and camera are coming soon).

Dennis (left) and Paul.  Dennis (a 3 pack a day smoker for 45 years) lost his voice in February so he recently quit smoking and has gone one week without a cigarette.  I’m really impressed!

My Sailors Platter:  shrimp in a garlic butter wine sauce, breaded shrimp, crispy curled flounder and baked potato.  I usually eat half my lunch and take the other half home for dinner, but I scarfed this whole thing down!

My friend Evvie’s platter, similar to mine but with grilled shrimp instead.  I thought her cocktail looked refreshing.

After our meal, while we waited outside for our ride home, I complimented Rose (in the yellow and navy striped sweater at the top) on her pretty necklace.  It had an open heart pendant displaying a small color portrait of a handsome man.

I said “May I ask who the gentleman is?  Your husband?”  Rose said “Yes, a wonderful man.”  I said “Is he no longer with us?”  She said “He died was 60.”  I said “So he passed at age 60?  That’s very young.”  She said “No, he died in 1960.”

What?  That honestly startled me.  I know Rose has two children who talked her into moving back to Pennsylvania from Florida some years back.  But she was married, had a family and lost her husband, all before I was even born?  

She must’ve sensed my puzzlement, she said “I’m 93, you know.”  No I didn’t know that—but I just watched this woman eat a hearty sesame-soy salmon bowl and drink an entire foot tall draft.  I would’ve guessed her age at 75, tops. 

We were the last two riders on the Access shuttle and had a friendly chat. 

I don’t know what I’m trying to say here, I was just amazed at her energy and vitality.  I don’t have a death wish, but in the last 6-7 years I’ve dealt with so many medical issues I’ve sometimes wondered if I’m going to make it to 70, let alone 20 plus years after that.  Rose manages to make it look both doable and something to enjoy while you’re at it.  Thanks Rose.

Happy Memorial Day, Everyone