After an interesting year of ups and downs i've made a short list of observations about my experience with ME/POTS:
These are the things i’ve noticed:
One final point i'd like to make is that I believe we're a heterogeneous population. My version of ME seems to be different than quite a few people's on here, POTS limits me most day-to-day and while i've been bedbound for months at a time, following the advice on this forum i've managed to get back from maybe 30-40% functioning to about 60% at times which is pretty cool. I just wanted to write these observations incase they help someone.
These are the things i’ve noticed:
- While I haven't had PEM from overexertion in a long time. The dreaded bed-bound, brain fogged episodes seem to be related to the gut in my case. I've been able to trigger a PEM like state by drinking certain types of alcohol, taking 3-4 probiotics at a time or even just eating certain dairy products. In fact, i've felt so ill from my gut that i've literally felt like I was being poisoned and started throwing up.
- Winter reduces my functioning massively, I believe this is due to the cold, which makes the body use more energy to regulate temperature. I found that in winter I could barely walk more than about 300-400 yards without almost crashing, if I slow down the walking I can do a bit better, but the main thing I found that increases my walking capability about 3-4 fold is layering up with base layers, gloves, a full face balaclava and ski socks...sounds crazy but I was able to walk around 1-2km in winter part way round a reservoir by keeping my body warm.
- Summer is a different story, since June this year i've managed to go on two trips abroad in Europe (flight times 3-4 hours). I didn't crash and paced well, sitting down in airports etc at every opportunity. My only real limitations were walking too far and swimming, if I swim or use my arms at all I usually have a POTS crash and need to be horizontal. on my first trip I averaged 8000 steps per day and the second trip the average was 5000 steps per day. The key here was not walking too far in one go, but doing everything in bursts of activity followed by long periods of rest.
- Hay fever seems to cause me all sorts of problems in summer, it makes me fatigued and brain fogged, my guess is that histamine causes this...i've been taking half a 10mg cetirizine hydrochloride tablet daily which seems to help quite a lot and get me feeling pretty normal again.
- Green tea seems to help a bit with my gut and with energy.
- Pacing with a heart rate monitor isn't as reliable as listening to your body.
- Pre-emptive rest such as lying down before you have to do a bit of walking etc seems to work wonders, the same applies to lying down/sitting after any walking or short bursts of physical activity, this seems to help me avoid crashing and seem almost normal to my friends/family most of the time which is great. I think this works because we have an issue with oxygen utilisation/uptake in the muscles (just a theory of course).
- Quitting my job was hard but if i'd have carried on working i'd have been bed-bound by now.
- POTS seems to cause me the most issues day-to-day, i've found that keeping my elbows tucked in to my waist when using my arms helps a lot.
- Sleeping well definitely helps everything, from fatigue to joint pain. It isn't a cure but it seems to be better than any supplement i've ever tried. Edit: However if my stomach is bad...I still wake up fatigued/malaised no matter how well I sleep.
- I haven't trained at the gym now for over a year and only do stretches if I go purely for my mind. Avoiding the gym has only improved my health.
One final point i'd like to make is that I believe we're a heterogeneous population. My version of ME seems to be different than quite a few people's on here, POTS limits me most day-to-day and while i've been bedbound for months at a time, following the advice on this forum i've managed to get back from maybe 30-40% functioning to about 60% at times which is pretty cool. I just wanted to write these observations incase they help someone.
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