It starts with a knot in my head: fatigue

Fatigue is in the news, as a serious long term effect of the COVID-19 virus. It’s a familiar experience for me and I thought I’d track it for you, today.

I felt ok this morning: stiff fingers, a little tingling from my neuropathic pain but no stabbing or throbbing; the usual cough but no wheeziness. Refreshed from sleep as the medication controlling my pain had worked well and the dog was settled.

Now I am slightly shaky, sweaty, it’s hard to think about anything. I have to sit down. The sounds of school children and men working on the house across the road feel like burning, piercing sensations. Every usual pain is present: my feet, ribs, hands, wrists, neck, back, forehead, ears, eyes, bridge of my nose. Pains I was not aware of when I was eating my porridge 2 hours ago. The whining sound of the drill, working on the mortar between the bricks of my neighbours’ house is so painful I take my hearing aids out. Ah, that’s a bit better.

Today I felt the fatigue build slowly, realised I was pushing myself too far, but wanting to get there. Where? To this point now, with my hot drink, in my armchair, feeling like I’d done something worthwhile. But what have I done? What happened?

I got up, remembered the mechanic was collecting my car for its MOT. Grabbed the keys and found the MOT paperwork from last year, left them in car for him (to minimise face to face contact). Dog walker came for the dog. Sat for a while with cup of tea, so far, so good. Ate breakfast, realised I was feeling determined. Not a good combination with fatigue, but that didn’t occur to me then.

I was curiously oblivious this morning. Probably the car MOT and builders across the road distracting me. Had a shower. Had to sit for a while on my bath board to rest. I didn’t notice the knot starting in my head. The pain intensifying. Got dressed. Sat for a while, noticed the rubbish bin and remembered the recycling. It would be good to get that done, too.

Downstairs, had to rest again. What was it that made me get up and keep going? A sense that this day could be good, that the increasing pain in my head would be fixed with distraction, what better than to get stuff done? Clearing breakfast, I noticed I didn’t really care how effectively I did it, so long as it was done. Keep ploughing on, keep on. Tying the recycling bags was painful for my fingers, brutal. I got my penknife to cut through the strong sticky tape on cardboard boxes, to flatten them, and noticed the recklessness again. The knot in my head was expanding like a strange shaped set of balloons, no space to think. I was starting to tremble.

I held my breath on my front path when I saw the dust and heard the drill, nearer, screaming. I froze. My fragile lungs, nose, throat. I must get indoors as soon as possible. Slowly, slowly now, don’t rush, be numb, it’s ok. The balloons in my head knotted and swelled some more. I was sweating. Carefully I made my way, doing little tasks automatically so I knew once I was sitting, I could stay sat till the sweating and trembling and throbbing and all that and more stopped.

Then my online shopping order arrived, delivered with a welcome smile and kind words. Gave me a flurry of warmth, which cleared some of the knots and made me decide that the shopping could wait, there in the hall, till I was ready. And so I sit and wait for the warmth (of that smile, the words, my coffee, the gentle breeze) to lift fatigue heaviness, lighten fatigue fear, stroke painful edges.

Since fatigue became a big part of my life, I have learned to look out for the knot, the trembling, the pain. I’ve learned to sit and wait, often for hours, for it to pass. Sometimes it is alleviated by watching a film. Other times by watching the trees. Curiously, sleep does not necessarily help: you’d think it would but it doesn’t always. Since lockdown, I’ve learned that a quiet life is more satisfying than a rollercoaster of things I used to associate with a good life, followed by fatigue crashes. I’m still learning: still getting it wrong. I’ll be wary today.