Basic Stuff

• Name: Elizabeth
• Country: Canada
• State: Nova Scotia
• City: Wolfville
• Gender: Female
• Age: 75
• Education: Masters Degree
• Primary Illness: Long COVID
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
• Year Illness Began: 2020

Functioning Interrupted

Most Impactful Loss

I had taken early retirement to do things I’d always wanted to: travel, hiking, kayak camping, skiing. I was very fit for my age, had a lot of friends to do activities with. All that is gone, I have a couple of friends left who believe and understand my disability, I spend most of the day housebound

My Story

In early March 2020 I became ill but for a while continued with winter hiking, thinking this was a cold and vitamin C and oil of oregano would cure it. Somehow most of us thought Nova Scotia was too isolated to have Covid. My “cold” lingered for a month, while the provincial premier declared the first positive Covid test and shut down everything.

I thought there was a slim possibility that I had Covid, but not really. I improved, a bit fatigued but determined to resume my active life. With the lockdown things were a bit limited but it was summer and the outdoors beckoned. I walked my dog and went swimming every day with buddies. I pushed myself to swim further and further.

At the end of the summer I was suddenly hit with severe dizziness. I went to doctors, had tests done, but nothing showed up to account for the dizziness and now greater fatigue. For awhile I kept swimming because in the water I knew I couldn’t fall down. But by October it was too cold and I stopped. At the time I wondered if I had remitting relapsing MS, since I’d had bouts of this kind of thing in the past. But that was pretty much ruled out.

Then I wondered about Long Covid; could my “cold” in the spring have been a very mild Covid infection and my sudden bout of dizziness and fatigue months later be related? I joined Facebook and looked for Long Covid support groups, found one and asked the question: can you get long Covid months after recovering from acute Covid? The answer was a resounding Yes. I asked my doctor for a referral to the Complex Chronic Conditions clinic, and a year later they admitted me. By then they had two streams, one for Long Covid and one for everything else. My doctor thought my illness was Central Sensitization Syndrome, so I went into the “everything else” stream, even though I tried to convince them I had Long Covid. But without a positive test, which simply wasn’t possible when I got sick, I was diagnosed with ME/CFS.

In the long term the label made no difference, I certainly checked all the boxes for ME. Over three years my symptoms waxed and waned. The past three summers I managed to keep a vegetable garden large enough to feed me over the winters. Summer of 2020 I swam, summer of 2021 I kayaked daily and went on a 4 day kayak camping trip in the fall which was a huge mistake. Spent a large part of the following winter in bed.

But by summer of 2022 I thought I was well enough to go kayaking again at a local lodge, no camping this time. By midsummer I knew I was getting worse. I was being coached in pacing by an occupational therapist at the chronic conditions clinic, but my urge to keep moving was just overwhelming in spite of the abundance of evidence that it was causing harm. This past winter I have been much worse, and in effect am forced to pace because I just can’t do anything else.

I won’t be gardening this spring or summer. I had to hire a house cleaner and am in the process of getting a wheelchair. My vision is affected, I see double but the optometrist sees nothing wrong with my eyes. Brain fog has settled in with a vengeance, even though I can ace cognitive function tests.They should be testing my ability to remember and follow the steps for making a morning cup of coffee! The dizziness is my constant companion, but I am managing to avoid chest pain and shortness of breath by extreme pacing.

I am beginning to realize that with my age (75) this is probably permanent. I try to keep a positive focus—how can I reinvent myself if physical activity is out of the question? But on bad days I sink into apathy and depression. I can’t keep up the wide circle of friends and activity buddies I once had. Bright sunny days blind me. I watch the runners and cyclists in my neighbourhood with envy and despair.

But I got a new dog (my old one died mid-pandemic) who is old, small and quite comical. I drive her to the local swimming hole and throw sticks for her to swim after. I fantasize that when the water warms up I will be able to swim with her. I met a young man with severe progressive MS and we are talking about how to make our small town more accessible and inclusive of people with disabilities, both visible and invisible. He says when I get my new wheel chair he’ll take me on a tour of accessible trails. He might be my way into a community of people living with disability.

As an addendum, I had an infection in 2000, when I was living in the Vancouver BC area, which turned into a post viral syndrome. My GP at the time diagnosed me with depression which I fiercely denied, and a friend working at UBC directed me to a doctor with an interest in FM and CFS. He diagnosed me with CFS. However within 6 months I was on the mend so technically I did not have CFS, since being ill for at least 6 months was then a requirement.

I recovered almost completely and resumed a normal life for 12 years. There was a brief recurrence then but I was fine after a couple of months and no care or treatment. Same thing happened again 5 years later. When I got sick again in 2020 I thought this can’t be good, the healthy gaps are getting shorter and shorter. When I Googled relapsing remitting the only thing that came up was MS. Hence my initial suspicion that I had MS, not Long Covid or even ME.

I can’t say that it cost me anything financially, my initial bout of illness in 2000 caused me to rethink my life goals and I cut back to part time work, with the intention of quitting when my savings were sufficient. An inheritance from my mother in the same time frame helped things along a lot. These days what I would have spent on entertainment, travel and other activities is now being redirected toward assistance with daily living.