Excerpts from a Long-haul Diary

The early weeks and months of acute COVID-19 infection that became Long COVID were full of unknowns, fears and struggle; but also gratitude, simple joys and pockets of progress. I’ll let excerpts from my journal do the talking.

January 14, 2021 – My daily life for months has been: go to work, come home. I do nothing else. I’ve been playing it safe as COVID numbers increase. I didn’t want to bring illness home from the hospital. Then yesterday, I tested positive. What a surreal experience. That thing we’ve been avoiding for months is in my home – in my body. I felt the fear. I felt the guilt. Then I let them go because they don’t serve me right now.

January 20 – I am on the mend! I can tell I’m weak, but not as fatigued as last week. I think I’ll be back to work early next week if my congestion resolves. Feeling very grateful to get over COVID quickly and easily!

January 25 – Still recovering. Still off work. I keep thinking on how much harder this is for those without sick time, job security, benefits, ability to isolate within their homes and for people with dependents.

January 27 – Waiting to hear about a return to work plan. The other day I realized just how weak I am. My quads were sore and fatigued from a 30-minute brisk walk! Today, I did a 20-minute light workout in the basement and was gassed afterward. I do not want to return to work just to get injured and be sidelined, again. Injury prevention is now the main motivator. I need to rehab myself!

February 6 – Return to work proved much more difficult than expected. I hit the wall one hour into my day. The COVID fatigue is the real deal. I made my own plan to go back at 50% patient caseload and full hours. IT DID NOT WORK. I counted the minutes through my whole shift – it was agony. Then, it took two days to recover. I’m working half days now, instead.

February 17 (what would be my last day of work) – I must have this Long COVID thing. The fatigue is intense. It is so hard to predict. I back off when I start hitting a wall, but it’s tough to know where that wall will be. It’s demoralizing. I’m trying to find contentment in having the time to recover, but it’s not enjoyable when I feel this ill – when I am a shadow of the physio I normally am. I’m truly doing the bare minimum and going through the motions. Just getting through. I’m doing what I can but struggling because “what I can do” is not much at all. Three hours of work takes all the wind out of my sails.

February 22 – I’m spent by almost nothing. Using my brain too much can be tiring, too. Puttering around the house takes energy. I feel so disconnected from my body. How can the only option be “sit still”? Sit still and don’t think too hard. This fatigue is continuously shocking. I can’t just push through or try harder. It quite literally demands the opposite.

March 4 – The isolation is bothering me lately. Maybe it’s the lack of social interaction itself, but maybe it’s actually my lack of energy. Some days the boredom, the lack of purpose, the lack of activity – it gets to me.

March 13 – I had my virtual medical intake and now have a virtual rehab assessment scheduled. I’m glad to potentially get some advice. Hopefully I will have no more setbacks and no more stages of strange symptoms.

March 22 – I think I’m arriving at more acceptance. I’ve wrestled with this, but I have Long COVID. A doctor named it for me, but I already knew. I’ve started researching and reading more. I’ve joined a global support group for Physios with Long COVID. I’ve started to let go of timelines. With this comes new feels. I’m mostly grateful & hopeful. I also have moments and days of discouragement, weariness, boredom and fear. I’m ok, except when I’m not ok. This is tough. But I’ve been through tough. I know tough. I can do hard things.

March 31 – Today was not a good one. In bed all day. If I don’t come out on the other side of Long COVID with an ME/CFS diagnosis, I will be shocked. But who knows! This is a tough experience in many ways, but I also somehow feel at peace. I’m not without hope.

April 12 – Being chronically ill during a pandemic is lonely. There are still small joys and moments of beauty, but I’m a little down. Monotony and lack of productivity are hard. Everyone is carrying a lot right now, so I must go it alone to some extent.

It’s a heavy load to carry – having to keep informed so I can teach my healthcare team how to care for me. They aren’t informed enough to Do No Harm. They may be “doing the best they can with what they have”, but what they have is not enough. However, for my own health and stress management as I advocate for myself: one step at a time. I can’t fix it all.

April 17 – Some things I thought of: 1.) This process will be stressful. I need to accept that; 2.) Being true to myself, my needs, my voice are the most important; 3.) Remember to count the good and the positives. I’ll need them; 4.) I cannot predict the future. The things I’m fearing have not yet happened; 5.) I am ok. I’m coping well. I’m remaining as open and fluid as I can be. I’m finding some beauty in the struggle.

April 20 – My echocardiogram is today. I’m resting up since it will be the biggest outing I’ve had in a month. I’m grateful for more investigation. I’m still recovering from yesterday’s exhausting virtual OT session. I may still be recovering from last week, too. I’m not getting enough time and rest between appointments and activities to allow for recovery.

The other night I lay awake with my spouse sleeping next to me and I was scared. I had a sudden onset of sharp pain on inspiration to the right side of my chest, and some cramping in my right arm. Position change didn’t help. My SpO2 was low. My heart rate was ok. My resp rate was normal. But there are so many things that don’t add up with this illness. I didn’t let myself go too far down the rabbit holes, but a PE or stroke or throwing a clot somewhere crossed my mind briefly. So, I prayed. Finally, I was able to calm down and go to sleep. My downward trending O2 levels are concerning. Echo today. GP tomorrow. I think now we must talk about my lungs.

May 1 – Finally managed a tiny walk! It’s a big step of progress and meant a lot to do an outdoor activity that doesn’t require sitting. I’m tired and need to rest, but feeling grateful.

May 3 – My WCB rehab team is finally getting it! It’s been a tough slog of advocacy and sharing resources. I’m very relieved that we’re moving to fewer appointments.

May 11 – Reminder: Rest and “doing nothing” are wonderful when you have the option, and not when they’re forced on you by illness and loss of function for an undetermined timeline. I had moments of feeling burnt out like every other frontline worker during this pandemic. I wanted a break just like everyone else. Not.Like.This.

May 16 – Good things are happening! I’m having better days more often. Fatigue is the primary disabling feature, but there are many symptoms. This is a multi-systemic illness. I think I have dysautonomia. My heart rate is less volatile with pacing, but it’s still abnormal. I don’t know what the future holds, but even a small increase in function makes life so much better. I also had a great experience with Respirology at the RGH clinic. The PFTs (pulmonary function tests) were very exhausting, but were normal – yay! The physician was willing to take the time to hear me, wanted to understand, was actually informed on Long COVID and even knew of ME/CFS. What a wonderful experience to have a clinician truly listen and collaborate.

May 28 – My first time attending a group therapy session was intense. It was hard to face the collective pain, loss, grief, unknowns and disability that we’re all experiencing. I wanted to run. I didn’t want to witness our reality. But I took some deep breaths and stayed. It was good to be understood and to remember I’m not alone in my experience. I’m at a moment when I’m daring to hope I can recover fully. The reality is: I may not recover. This is scary. This requires so much letting go. Some of the letting go is good – a lot of it is grief. So much grief and pain. So much pressure to stay positive and hopeful for others. What a rollercoaster. What an ebb and flow.

June 11 – Now that I’ve arrived at return to work planning – with WCB help this time – new emotions are surfacing. I’m fully vaccinated (yay!), but my body cannot handle re-infection. I wonder if returning to work will be overwhelming for me. I wonder if I can handle the risks of working with a covid-positive patient, again. Each step of this experience requires letting go and trusting that it will be ok. It’s heavy and hard, yet I know I’ve got this. I will figure this out.