A ME/CFS Update

In January I became concerned about my energy levels. Through 2024 I shrugged off post exercise crashes as post viral fatigue or an issue with my ADHD meds. While I had random crashes, I was still able to do a 10k run whenever I wanted to. But the crashes started to become more frequent and disproportionate to the level of exercise. A 15 minute walk could leave me feeling like I had run a half marathon. Muscle fatigue, pins and needles in my face and hands and a feeling of utter exhaustion. Towards the end of 2024 that feeling became more and more common and I gave up running.

After speaking with my GP they thought I might have ME/CFS. Myalgic encephalomyelitis / Chronic Fatigue Syndrome. So they referred me to a specialist clinic. 9 months later I had an introductory meeting on Teams and a few days after that I received a letter through the post with my first appointment slot. It’s for mid-Feb 2026. By the time I have my first appointment it will have been roughly 2 years since I caught COVID and first developed symptoms of this condition.

I don’t know when or even if I will get a formal diagnosis. Even if I do, continued testing and analysis might suggest I have something other than ME/CFS. It could be POTS as I have had dizzy spells when standing up. It could have been Long Covid and my time off exercise may have left me with reduced fitness levels. I’m not sure what it is and I have to wait another 4 months before I can start to talk to someone about it. It’s frustrating.

If I’m simply unfit, then I should get back to running, cycling and swimming. However, if I have ME/CFS then exercise is tremendously bad. Research shows that the act of exercising actually harms your muscles with ME/CFS. In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body. So I should wait 4 months and see what the doctor says, right?

I should, and I am, but I am aware that there is no test for ME/CFS. It’s a diagnosis based on my experiences after a series of blood tests have ruled out other conditions. My blood tests came back all negative for the usual issues, but if only one had said “ME: Positive”. Of the two doctors I’ve spoken to about this, one said it sounds like ME/CFS and the other said it didn’t. From what I’ve read, I think it’s ME/CFS but I’m no expert. Without an experts opinion I can’t act with any real agency.

Knowing exactly what was wrong would help me move forward. That said, there’s not much moving forward to be done with ME/CFS. There’s no test and there’s no cure. There’s an educated guess and a life spent pacing yourself just so you don’t make the condition worse. Some people end up living their lives from their bed, exhausted from lifting a spoon during breakfast. I saw how ME/CFS ruined my mum’s life at roughly my age. That can’t be my future. But it could, and maybe in 4 months I might have an idea of whether it is or not.

Until then I’m trying to relearn how best to pace myself. For a freelance photographer who spends hours holding up a multi-kilogram camera while lugging around a multi-kilogram camera bag, pacing is hard. It’s too expensive to get a taxi from my house to a commission, but usually by the time I’ve arrived I’m exhausted. There’s also the internalised ableism telling me that I’m not really in need of door-to-door taxis. I’m just being lazy, so I walk and I’m exhausted.

Getting out for a morning dip to set myself up for the day can result in breaking me for a few days after. The way Post Exertional Malaise works is that it hits you 12-72 hours after the event. A nice sunrise dip with friends does indeed set me up, and then I lose 2 days in doing so. So how do I pace myself? I skip the dip and get a good nights sleep. Mornings are breakfast, dishes and then I rest on the couch with my cat and laptop while getting what work I can do done. I save my energy so I can cook lunch. After lunch I feel like the flu has hit my muscles and I rest/work. More often than not I ignore my Garmin watch’s Body Battery feature, and as I’m going to bed I glance at it to see I overdid things.

Pacing, is not easy and I have yet to really follow the tips from Reddit. As I don’t have a formal diagnosis I feel unable to ask for help or to say that I’m too exhausted to do something around the house. I should, but internalised ableism. “I’m not that ill.” If it wasn’t so expensive I would happily get the Visible arm band and subscribe to that, but the cost is prohibitive. If it worked though, it could be incredibly useful.

The Garmin Viviosmart 5 I have has a Body Battery feature that shows my energy level when I glance at the watch. Annoyingly it changes to some other metric if anything taps/knocks the screen so it isn’t always reliable. Also, nothing happens with the data during the day. It basically says a number and leaves you to work life out. Whereas the Visible system is designed for people with ME/CFS and those who earned a good wage before leaving work due to ill health. Visible works by telling you how much Spoon Energy you have each day, and it lets you know when you should rest. It’s possible I’ve been taken in by the marketing, but of all the apps I’ve tried, Visible is the only one designed for illness rather than fitness. It’s the only one designed to help someone pace not push. Right now, I’m still pushing but that’s mainly because I’m working part time and can’t afford to take time off work. But at some point, if I have ME/CFS I may be forced to because I didn’t pace myself.

It’s 3:10pm. I skipped this morning’s dip to pace myself as I’ve come into town to pickup my new glasses and see a photography exhibition. My Garmin Body Battery is at 36% and draining. I have only had lunch with my wife so far.

Your Body Battery is down 39 points overall since you woke up. Your battery is a little low for this time of day. Try to find some moments to relax and recharge.

I thought sitting in a cafe eating cake and writing would be calm, but my stress levels have been steadily rising since arrival. That might be due to the pancakes I had for lunch. But this was supposed to be a treat day. New glasses, photos, lovely weather. I haven’t enjoyed that yet and my undiagnosed condition is asking me to teleport back home and rest.

Life is a struggle. It’s just the way it is. It isn’t personal, it simply is this way. We struggle against gravity in order to build muscles and live our lives. The struggle to overcome helps us grow and be more than we thought we could. I understand that, but I don’t know if I fully accept that in my heart. I have struggled with my parents illnesses, my undiagnosed neurodivergent brain, anxiety, depression, running a business, getting work, losing six stone in weight, coming out as non-binary, learning to be deaf, and now life is asking me to keep going with even less resources than before. It’s a struggle.

Links

• Review: Visible Plus for Long COVID. Posts on Review: Visible Plus for Long COVID
• “A trio of photographers in New Zealand have captured images.... “A trio of photographers in New Zealand have captured images of ‘red sprites’, or red lightning...
• Between Convenience and Conscience. (or… Why I Won’t Use WhatsApp) I’m noticing more local businesses relying solely on Meta products like Facebook and WhatsApp for all their communications.
• Am I being lazy? Or am I Tired Tired? - Many Lemons. I've just had a chat with a lovely lady who is relatively new to her multiple sclerosis and was grappling with whether to call it quits and go home from work, or stick it out and 'man-up' to the tiredness she's feeling at the tail-end of a cold. The cold symptoms had ended, she 'just' had tiredness and lethargy.
• Garmin Pacing Guide : r/cfs.
• Frontiers | Wearable technology in the management of complex chronic illness: preliminary survey results on self-reported outcomes. Complex chronic illnesses like Long Covid (LC) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are marked by fluctuating symptoms...