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.
I had been stopping by, hoping there would be an update and had assumed that since there wasn't you were still dealing with long Covid. I do hope this fellow is right and there is an end for you, even if it is still a few months away. I can only imagine the pain, discomfort, and the anxiety and depression that accompanies it. Perhaps you need to take your walks in the late evening or very early morning to avoid the sun.
ReplyDeleteTake care and stay connected. We're all thinking of you and wishing you a full recovery.
Very kind, thanks Maebeme.
DeleteHi Doug. I've been thinking about you, and wondering how you've been doing with this awful long covid. Thanks for letting us know the latest. It must be so discouraging; and on top of the physical symptoms, the social isolation has got to be rough.
ReplyDeleteYou've got a lot of us blog friends who worry about you, and care about how you are doing. If nothing more, I'm hoping that are comments will remind you of this fact, and perhaps ease some of the lonliness that surely you must feel.
Take good care Doug. We're all rooting for you and hoping your long term covid eases sooner rather than later.
Carole
Thanks so much Carole.
DeleteI'm so sorry. I know my now son-in-law was devastated and depressed as time went on, but he did improve evidentially and is almost back to normal. Sunlight and hot temps were his biggest enemy and he has switched to tinted glasses and avoids the sun when possible. He gave up teaching (bright lights in classrooms) and works from home in his new home office located in a chilly basement. I would say he is in a "cross your fingers" phase 3. He also goes to bed about 2-3 hours earlier than pre-covid. But still so much better quality of life. I hope you zip to this point soon!!!
ReplyDeleteI did order the Andy and Don book and absolutely loved it. I am in love, still with Barney and Andy of Mayberry, but the book was so informational on their real lives and real character - good and bad. I am doing a summer reading challenge and I think I am rating it #2 on my list so far. Thank you for the recommendation.
Good to hear MM, Ive wondered how your SIL was. Thanks for sharing.
DeleteThat long Covid sounds a real bummer.
ReplyDeleteI’ve been meaning to email you these last few weeks but, procrastinator that I am, I kept putting it off. Just this morning I thought, “I’ll write to Doug today (or tomorrow, or… well you know the drill)”.
Anyway, I was going to say, “Hang in there”, but I guess that’s all you can do at the moment.
I’m beaming good thoughts at you across the Pacific.
Thanks Music Man.
DeleteThank goodness, I have been so worried!
ReplyDeleteCeci
You're very sweet, thank you Ceci.
DeleteI too have been wondering: What happened to Doug? Why hasn't he posted? I hope he's okay. So . . . sorry to hear you've had such a hard time of it with Covid (I had it once, fall of 2021, got over it pretty quickly but felt lingering effect of tiredness for about a month (my sister got it summer 2020 and spent a week in the hospital, but she's okay now)). Anyhow, glad to see you're alive and, if not well, at least it seems you're on the mend. Keep the faith; we're all rooting for you . . . and looking forward to many more posts!
ReplyDeleteThank you Tom, nice to hear from you.
DeleteIt's a tough one. Keep on waiting for it to end.
ReplyDeleteMy God Joanne, so true. Thank you.
DeleteDoug, I'm very very happy to hear from you! I've been reading your blog for years and have never commented. I was unsure if I should send an email as it might be received as spam. But regardless, I want you to know that there are surely many, many folks out there like me that are concerned about you and wish you a quick recovery from what has to be a horrible experience. I have enjoyed your blogs (in better times of course) and look forward to many more. Keep the faith my friend, and here's a wish for a speedy recovery to get back to 'normal'. CW
ReplyDeleteThis was a nice surprise, thank you CW. Means a lot.
DeleteHi Dug! I'm so glad that you posted an update. Sorry things haven't improved faster, but sounds like you're doing all you can. You mentioned some medication you were put on at some point and are you still on that? Sometimes some medications can have adverse effects... but I'm sure you know that. Do take care and know we're all sending good vibes and virtual hugs.
ReplyDeleteThank you Rian. They had me on gabapentin back in March, but currently I'm only taking aspirin and tumeric herbal supplements. Doctors don't understand long covid yet.
DeleteThanks for the update, Doug! This long covid has been beastly! At least you've got Phase 3 in your cards. And lots of good friends to cheer you on! ❤️❤️
ReplyDeleteThank you Florence. I'm praying to get to phase 2 soon.
DeleteI was wondering where you have been. I so enjoy reading your posts. I hear long covid is a thing. My sister thought she had it and I’ve been wondering if I haven’t had a touch of it myself. Just as long as it’s clearing up. That’s the important thing. I hope you feel better.
ReplyDeleteBeth
Thanks Beth. Oh it's a thing alright. Hoping to be better by end of year.
DeleteI am so glad to hear from you and other than feeling a little guilty for not sending you any well wishes, I am grateful to find that you are still hanging in there, friend. And I too hope that timeline is right and you are through the worst of it.
ReplyDeleteThanks very much DJan, and I'm very sorry for your own macular degeneration. I wish I’d said something sooner.
DeleteDjan, I would really like to ask you a question about macular degeneration, actually.
ReplyDeleteDoug, I've been worried about you. I knew that you've been struggling, and I've been trying not to be difficult. I've been reading a lot too, but holding back on discussing it. I know that this is a discouraging time to be Doug. That smelling fuel thing is wierd, isn't it?
Maya Angelou said, 'Every storm runs out of rain.' I hope your 'storm' ends soon.
PS I would surely stay out of the heat even without long covid!
Thank you Debby. Your thoughts are very appreciated. And I like that Maya Angelou quote.
DeleteWow, I had no idea. Thank God I have never had Covid. I think it's because I tend to be socially isolated and house bound. I am not exposed to a lot of germs from other people. I don't even shop for groceries anymore. Well, I hope your recovery will come sooner than later and that you will regain your old life again. Good luck and best wishes, Doug.
ReplyDeleteThank you Gigi. PS I don't know why your first comment here didn't show up until today. Blogger doesn’t always post feedback, no idea why.
DeleteSo happy to see you feeling well enough to post. That is progress. It may be slow, but just the desire to get back into "circulation" is a big deal.
ReplyDeleteYes, be careful of the heat. Even in good health, heat and sun can be dangerous. I understand, though, your need to get outdoors for awhile. Take your cell phone and a bottle of water when you take your walk.
Thanks dkzody. Not sure when I'll be going out again, but good suggestions on your part.
DeleteI hope you recover completely soon. Wishing you all the best.
ReplyDeleteThanks very much Gigi, Queen of Hawaii.
DeleteI’m so sorry about all this. I hope you get to the end of it soon. I’ve been in a boot for the last 3 weeks. Will find out next week if I’m having the tendon in my ankle repaired. I’m also having a brain mri bc my facial spasms are worse and the neurologist has mentioned a kind-of brain surgery for that. Sometimes life just sucks. I’m still hanging out at the center, but get tired faster. Anyway, good to have you back. 😊. Joyce.
ReplyDeleteThanks Joyce. I'm sorry about your tendon, but I've wondered about your neuralgia. I'm worried I'm dealing with something similar. I'm keeping my fingers crossed things go well for you. Please keep me posted.
DeleteYou know how concerned I've been--not just about your physical state but also the very normal depression you're feeling. I'm hoping that you will feel better through each stage and can get back to your normal activities ASAP. Thinking of you and sending hugs!
ReplyDeleteThanks very much Margaret, much appreciated. I'm sorry I haven't kept more up-to-date on others blogs, hoping when I get better I'll do more of that. I hope all is good with you my friend.
DeleteYEAY! Doug posted! Thank you for taking the time to let us all know your status. I had several friends who had real battles with long covid, but eventually they both recovered and are back at work. There are a lot of us out here pulling for you, hoping you will be feeling better soon! Take good care, stay safe!
ReplyDeleteMike - TX
My gosh, this was good to read. Thanks very much Mike, really appreciated.
DeleteGreat to see you have posted Doug and , like others have said , people with Long Covid as reporting getting well again , even if it takes several months . One of my friends used to hire a guy as a handyman - he was diagnosed with Long Covid and couldn’t work - so he rented a Narrowboat which has a maximum speed of 4mph and is recovering. I am sure you will be better too - I am sorry that you didn’t have the summer you deserved but you could have an amazing autumn ! Come visit the UK and I will hire a Narrowboat for you !!
ReplyDeleteSiobhan 😀
Thank you Siobhan, much appreciated. And I would love to visit the UK someday.
DeleteGlad you’ve allowed comments again! I’ve been checking in and continue to wish you good, albeit measured, progress. Take it at your own pace. Olivia
ReplyDeleteThank you Olivia, much appreciated.
DeleteGood to see your post. Wondered where you were. Lomg Covid is a bugger. I had Covid in January and am still quite fatigued but most of my other problems have eased - now I see how fortunate I've been. Still sleep 10-12 hours each day and cannot tolerate heat either. It's been an unusual 100+ here so I rarely leave home, take the trash out in the dark etc. I hope your recovery speeds up, miss your posts. Hugs.
ReplyDeleteThank you Celia, and I'm sorry you've been going thru similar things. If I could just lose the cranium and facial pressure, I'd be a happy camper. I'm glad to hear of your own good progress though, keep it coming.
DeleteHey Doug sorry to hear you’re still not doing good. I just found out yesterday about your latest post. Please reach out to the center for my contact information if I can do anything for you. I’m close by and can pick up groceries or anything you are in need of. Take care miss you.
ReplyDeleteThank you Mary, this was very nice of you. And I appreciate your offer. I miss you too, and I'm really hoping to make enough of a real recovery to return this fall. Thanks again. ❤️
DeleteStill thinking of you and trying to send you healing vibes!
ReplyDeleteThank you Bobi, much appreciated and I mean it. 🙂
DeleteThank you Bonnie, it's nice hearing from you. I hope Tom is doing better.
ReplyDeleteI recently read that some people suffering with long covid are using over-the- counter nicotine patches 24 X7 with good success. Dr. Frank Shallenberger reported this finding. This is all very new so somewhat experimental. Something to research and possibly consider???? I hope you feel better soon.
ReplyDeleteThank you Susan, I did see something about that, I should look into it further. Thanks again.
DeleteStill checking in and wishing you patience and forbearance, along with improvement. Olivia
ReplyDeleteThank you Olivia.
DeleteDoug, Wow, I’m so glad I stopped by ApacheDug’s Teepee today. Well, I’ve slowed way down on blogging myself, but today I’m taking a look at a few of my favorites I haven’t heard from recently. That includes you. 😊 I am so sorry to hear about the long COVID. I often see a friend here in Seattle and his wife is dealing with long just as you are and it has been a real bummer for her. I admire your search for answers. I truly hope you will move to Phase 2 and 3 soon! Doug, I’m sending you very best wishes for a full recovery. Take good care, my friend. John
ReplyDeleteThank you John.
DeleteWe're all out here rooting for your recovery, Doug, so you can resume the activities you enjoy and just live daily life without discomfort! Kim in PA
ReplyDeleteThank you Kim.
DeleteI don't often comment on your page but just wanted you to know that there are people out here still checking up on you.
DeleteThank you Jackie.
DeleteDamn, I hope you are better now. Cheers, Iikka
ReplyDeleteThanks Iikka.
DeleteThinking about you, Doug and hoping that you're making progress. Take care!
ReplyDeleteThank you Margaret.
DeleteThinking of you and hoping you are doing a bit better with the cooler weather!
ReplyDeleteCeci
Thank you Ceci.
Delete