I am writing this at 10:30 a.m. on a Monday. It's cold outside, and I have already done the school run. A message popped up on my computer, asking, ‘How am I doing?’
How am I doing?
It is an enormous question that I cannot answer, especially via a chat box. The British way to respond is to type ‘fine,’ skip the pleasantries and move on. I have used this approach for the past few years even though I have been chronically tired and have sore, painful limbs that often keep me in a wheelchair. I am not fine, so I write back,
I have been exhausted recently
I wait as the little chat box indicates an incoming message.
Oh well, everybody gets tired
Everybody gets tired? Is this all I have? Is it a bit of tiredness you get from working too hard or partying?
Since January 2021, my Long Covid symptoms have been dominated by what (some) medics call chronic fatigue. I will attempt to describe it by writing about my experiences via a few diary entries. My symptoms vary, as does the way it affects me.
Sunday at a Football Match
This is a regular occurrence for me, made possible only because the club relocated me to the disability area so that I can use my wheelchair. During the match, I am consumed by the drama in front of me, and it is the only time in the week when I do not think about my illness. I treasure those times when adrenaline and joy help me forget. As the final whistle blows, I get that sinking feeling that I will have to traverse the journey home.
Climbing The Stairs on Wednesday
I woke up feeling particularly tired. My legs felt like they had rocks tied to them as I shuffled to the bathroom and used my shower stool. Sitting down for a shower is strange and not wholly convenient, but it is a welcome relief for me this morning. I make it downstairs but forget my glasses. Everyone else has left for the day. The stairs look menacing as I get on my hands and knees to climb the stairs, resting on a larger step in between. When I return, I flop onto the sofa, exhausted for the next two hours.
Trying Audiobooks on Monday
I decided to give audiobooks a try. I have long since given up attempting to read a book or even a long article because I fall asleep very quickly and can never remember what I have read. I am excited, and there are so many books I want to ‘read’ and press play. Following the narrative takes a lot of concentration, and I tire quickly. The next thing I know, I wake up again on the sofa. Audiobooks get added to the pile marked ‘no longer able to do ‘.
Sushi on a Wednesday
My son is obsessed with sushi; he cannot get enough of it. On an overnight trip to Manchester (that I have been planning for weeks) we visit a large shopping centre as it contains a sushi restaurant. I park in the designated parking spots for someone with a disability and set up my electric wheelchair. I can see the entrance, so follow the path with dropped curbs. The dropped curbs lead me to a paving section about 20 meters from the entrance and then …. stops. There is no way I am getting down the enormous kerb stone. I have to retrace my steps and am forced to traverse the road to the shopping centre.
My wheelchair is fantastic and liberating. I simply would not be able to go to the shops without it. It does, however, sometimes cause chaos. As we enter the aforementioned sushi restaurant, the lady looks flustered as she has no free tables. I reassured her that I could transfer to one of the bar chairs. My son backs this up, “he can stand,” he says, matter of factly. She looks amazed and unsure of what to do. I have to convince her it is fine, but she checks on us every fifteen minutes to make sure I am ok?
Cancelled Plans on Friday
Today I am due to see an old friend for a coffee. It's been ages since we met because I get tired and have to cancel. I am determined to make it today, and I had a low day yesterday to conserve energy. To my dismay, I feel overwhelmingly tired before I am due to leave and have to sit down. I try coffee to get some energy back. I get worried. What if I get wobbly and tired when I'm out? I text and cancel. He is lovely about it but must think I am such a lousy friend.
These are just a few examples of what it is like living with chronic fatigue. I have tried tons of herbal and medicinal supplements and attempted to force myself to exercise. They worsen my fatigue, and any exercise renders me useless for days.
In January 2023, I was told that now I have reached the two-year point, there is little chance that my symptoms will improve. It's a hidden illness, and people often remark how well I look. Because of this, not everybody believes it exists, and I have been called lazy.
I understand that everybody gets tired, but chronic fatigue is not tiredness. It is completely overwhelming and feels like the fatigue is crushing you from the inside. By writing about it, I hope to spread awareness.
Paul Clarke is a writer and has written two books, one about his struggles with Long Covid and a novella. He also hosts a podcast which focuses on how it feels to live with a chronic illness.