I’ve mentioned that I have lost most of the past year to post-covid syndrome, aka long-covid, aka PASQ. The illness has many similarities with ME/CFS (Chronic fatigue is what most people call it.) The list of known symptoms, according to the CDC is:
- Difficulty breathing or shortness of breath
- Tiredness or fatigue
- Symptoms that get worse after physical or mental activities (also known as post-exertional malaise)
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Chest or stomach pain
- Fast-beating or pounding heart (also known as heart palpitations)
- Joint or muscle pain
- Pins-and-needles feeling
- Sleep problems
- Dizziness on standing (lightheadedness)
- Mood changes
- Change in smell or taste
- Changes in menstrual period cycles
Of these, I’ve struggled with all of them. My least severe have been mood changes, changes in menstrual cycle, and diarrhea. The longest lasting and most severe is the fatigue. I’m still fighting that beast, and it’s a very real threat to my job and my ability to provide for myself.
Fatigue isn’t just being tired. Fatigue is feeling like your entire body just finished a triathlon, but maybe all you did was get out of bed and drink a glass of water. The worst part of it is, resting doesn’t help, but all you can do is sleep. Or, for added excitement, you can lay around like an abandoned throw pillow. You’ll want to sleep, you’ll be in a quiet dark room, maybe with soft music playing, your eyes are closed, but you’re awake, and sleep won’t come at all. At the worst, I was sleeping 14-17 hrs a day. Now, when I have a crash, I’ll sleep 10-13 hrs in a day.
I will say that my fatigue has gotten better. I was down all day every day. I did work with a physical therapist because after the fever and breathing issues cleared, I couldn’t even stand without help. The levels of vertigo were so intense I was using a walker just to be able to catch myself in case I fell. I can get around without assistance now, so that’s an improvement I’m glad of.
I’m also glad to be able to drive again. I had a fatigue crash hit me while I was driving one day. I was sitting at a red light. There were 2 lanes in front of me, each direction, and on one of the busiest streets in the city. I dozed off without warning. I was fine one minute and the next I was scared out of my wits by the driver beside me blasting their horn at me. My foot had come off the brake pedal and the car was moving forward. I gave up driving until I could be certain of my ability to do so without getting myself and/or someone else killed.
The exercise therapist had me doing graded exercise therapy. Yes, at first it helped. Then it started making things much worse. In fact, the last crash it caused me lasted two weeks. It brought back the trouble breathing, coughing, chest pain, joint/muscle pain and nerve pain. I fought to manage to work, used all my medical leave from work for a month in one of those weeks, and my doctor was so worried at the symptoms that she’s referring me to a cardiologist and a neurologist. She told me to discuss things with my physical therapist, helped me line out what to tell him so he’d understand, and told me to be sure not to let him push me because more crashes like that could cause permanent damage.
Welp, he didn’t really listen, so I quit PT. I’ll wait and see what the other doctors say.
Hand-in-hand with fatigue is brain fog. Brain fog is lots of fun. You’ll start to say something, get a word, or half a word out, and then go completely, stone-cold blank. You’ll also repeat yourself for no obvious reason. A recent example was when I was at work and asked a question, got the answer, thanked the person for the answer, and then asked it again like I was a glitch in the matrix. I’ve done some truly stupid things because of that fog, too. Most recently, I was trying to make a grocery list and left my phone in the fridge. I have forgotten to lock doors, and even forgot the passcode for my own security system. (Yep, that was exciting. Especially when I had to explain to the person at the security company that I was having brain fog and needed help to remember the secret word they needed so they could turn off the alarm.) Less exciting, and more amusing, I got dressed one morning, put on my shirt, socks and shoes, and didn’t realize I had forgotten pants until I opened the door.)
People who had struggled with chronic fatigue will understand these battles well. The rest of the world may not. The reality is, there’s some ability to predict a crash, but at the same time, all the knowledge of the patterns in the world won’t stop them from hitting you in the face like a runaway train. The best advice I’ve gotten so far is to find my boundaries and stay inside them. It’s hard because the boundaries can shift from day to day, and I’m still figuring out what the “usual” limits are.
Isolation became a very real experience. I’m an introvert to start with, so being on my own doesn’t bother me. Isolation is a step beyond into feeling as if I disappeared from the planet, no one would notice. It was too hard to keep up with friends and family. In the worst of it all, I’d go a week without contacting anyone. If not for my kids calling me to check in and talk to me, I’d have been completely alone. I will never forget that they stepped closer to me at the moment I needed most to know there were people who cared, who wanted me to get well, and who wanted me in their lives.
Anxiety is another fun part of this, though in my case, it’s rarely random anxiety. I’m already on medication for an anxiety disorder and am well-equipped to navigate most anxiety. This is the kind of anxiety that comes from facing a very real, very stressful situation.
Things that cause me anxiety:
Missing work. How long will they put up with me? How many opportunities will I lose because I can’t control this?
What will I do if I lose my job?
I just relaunched all my social media platforms. The blog, Twitter, Facebook, my newsletter… will people stop following and stop reading my work if I miss a few days because of fatigue? Scheduling posts helps with much of that, but if the scheduled posts run out while I’m fighting fatigue, what then?
I struggle to write most of the time. Will I ever be able to be the beast I was, dropping 5k words a day?
Will I ever be able to go hiking again? Will I ever be able to keep up with the housework again? Will I be able to spend a day with my only local grandchild without dropping over in a heap for the next two days? Will I ever be able to reliably do anything again?
What happens if it gets worse? What if it never gets better?
Admittedly, some of these are fears of the future. MOST are just my brain trying to wrap itself around the immense changes in my habits, capabilities, and the lengthened distance between myself and my goals….
And it’s *hard* to do! It’s mental torture to try to do something I used to handle with ease and not be able to even complete half of it.
I bet my topics last week are making sense now, hmm?
But the worst part is that while most people know me, know how I usually live, and are supportive and encouraging, it’s no secret that the rest of the world sees anyone fighting with fatigue as being “lazy.” I’ve had people suggest that I do graded exercise therapy, tell me to eat more protein, tell me to try a new fad diet, say things like “If you get up and move, you’ll feel less tired,” and so on. If vitamins and diet would fix this, I’d have been on my feet in a few weeks. If graded exercise therapy worked, I wouldn’t have quit PT or have my doctor worried enough to refer me to two new specialists.
Well, how can people support someone who struggles with post-covid fatigue or with CFS?
Believe it or not, even the CDC offers guidelines on that. None of the recommendations from there or from the millions of other sites that talk about how to help say anything about telling a sufferer what they should do.
1) Listen. No, wait, you’re not listening. You’re problem solving. Stop fixing and listen.
2) ASK. It doesn’t make sense. We know that. Ask when it seems odd to you. Accept the answers you get.
3) OFFER. Can I shout this one? Post it in neon letters at every window? Find out what that person needs. Would a new mattress help? Do they need a way to sleep while propped up to help with breathing issues? Can you go to the grocery store for them? Are they getting to their doctor’s appointments or do they need help with that? Just being very honest, in my days with the fatigue and vertigo, I had a friend who would come over and just be in the house so I could bathe and have help available if I needed it. Remember when you offer, it may be that the person you want to help does want to try. Let them try, but be there to support them as they do.
The last estimate I saw is that over half of people who have covid will develop post-covid symptoms of varying severity. The numbers of those who end up with fatigue issues are insane. The problem has captured attention in the media and finally research into what causes the fatigue is being done. This is research we should have had ages ago for CFS sufferers, but the numbers of people who’re becoming disabled in some way have pushed interest in the illness forward.
New discoveries are being made, too. There’s information about how the mitochondria aren’t working right in cells, oxygen isn’t being taken from the blood steam in the right way, inflammation in the spine, damage to certain areas of the brain, and that’s just what’s being found for people without obvious organ damage.
In the meantime, just know that there aren’t any answers that work for everyone. In fact, there are few answers that might help a handful of people.
Those of us who are fighting this beast are facing emotional and mental wear and tear as we struggle to regain our lives, or cope with the loss of the life we’ve loved and worked hard for. Even if we find some good doctors and an online support group or two, it’s easy to feel very lost in the avalanche of things gone wrong, especially without clear answers. Please be a support to those you know who are facing this life-altering mess. Be gentle and caring with us, and encourage us to be gentle and caring with ourselves.
There is a way forward. I don’t know what it’ll look like for you, or for those you care about. I don’t even know for sure what it looks like for me. I just refuse to believe that there isn’t a way. It’s probably going to be a nasty detour through a rough part of town on roads full of potholes big enough to swallow a semi truck, but there is … has to be … a way forward. If you’re fighting, know that you’re not alone. There are millions of us in the same battle.
Oh, and while I’m here…
GET YOUR VACCINATION! Don’t argue with me about it, don’t comment about how unsafe they are or try to sell me some government conspiracy theory. If there had been a vaccine sooner, maybe there wouldn’t be so many of us who’re sick with these long-term symptoms. Don’t let yourself join us.