Being of an engineer type mindset I can be slow to give up and very inventive in figuring out new approaches to.problems. Did that help? Nope.
I can definitely relate to that ...we also have the ‘push on through/resting is for wimps’ doctrine from the eighties onwards. I definitely had the mind-set that doctors needed managing (I have a less than favourable experience with doctors since the age of 7) and applied my project management skills to getting my diagnosis (took a year). When I got my diagnosis I was so relieved that there was an answer, I didn’t really think too clearly to do anything but follow the NHS advice (I was a bit foolish there).
It didn't work. Each time it didn't work, I decided I just needed to change my approach. Over the years I fiddled about with shorter exercise bouts, longer gaps between sessions, alternating aerobic with stretching or toning sessions, experimenting with optimum number of reps and so on.
For me I had the dreaded GET as you know. This was fine as gentle walking (especially when that was all I was doing when signed off sick from work for 5 months). As soon as it got to a minute of jogging though my hips and knees hurt so much it was self limiting. Even though at that point I believed that GET was still the answer I decided that it shouldn’t involve jogging due to the stabbing pain which was definitely not an exercise pain/ache. Immediate feedback like this was typical of my early experience ...I remember carrying a bedside table to the car to go to the tip ..it wasn’t that heavy but within hrs I was laid up. I tried this out a couple of times and soon realised that payback was consistent with lifting/carrying.
It feels like there may be some heterogeneity between experiences in feedback/pain? Was your pain similar to mine
@Invisible Woman ?
I still carried on a daily 20min walk for about a year but avoided any lifting, jogging/high heart rate activity etc due to these early warning signs. Eventually whilst trying to hold down my job I dropped the walk and moved from 4500 steps per day down to 3500 and now I’m on 2500 for around 3 years now (well 1500 whilst I’m still in relapse). On 4500 and 3500 steps I was crashing bad once every 3 weeks or so. On 2500 with a less demanding job there has been a corresponding drop in what I call unpredictable but frequent crashes.
I am not sure whether the GET was harming me or whether it was the job or just my bad management. It’s probably a combination. I’m not sure whether I’ve declined over the last 8 years either ...it feels like it but I know this could easily be attribution bias. In terms of duration of walking I’m limited to 200 steps (150m) at a time whereas 4 years ago I could walk a mile into town. I guess I will never know.
one things for sure, with 2500 steps, heart rate below 100, not being able to lift or carry weight of any size, and direct pain feedback exercise feels like an impossibility.
Maybe, when I was moderate if I'd stuck to just doing a little bit, purely for pleasure and without any thought of pushing or improving fitness or strength and staying well within my boundaries, I might not have gotten worse.
It has never been possible in my life with mild, moderate and physically severe ME to add any physical activity/exercise without crashing. My trouble has always been not being able to cut back enough.
That’s what it feels like, although I could give up work ...I often fantasise about all the things I could do if I retired ...I suspect that’s wishful thinking....it doesn’t feel like exercise could be part of that though.
However a number of local ME groups run apparently successful swimming groups or yoga groups. Off the top of my head I can just remember with confidence that Sheffield has a swimming group, but was it Sussex where there is an ME yoga group? On patient forums you read about people going to the gym.
I don’t have a Facebook account mainly because I find the way some people ram boring stuff down your throat or massage the truth a bit tedious.
I’m not really exposed to the broader experience as a result. I wonder what the heart rate expenditure would be for swimming vs walking. It feels like they would be similar? The gym thing is interesting ...I wonder what it actually means in real terms. I went on our last holiday abroad in 2014 after I was first diagnosed... that had a swimming pool (thankfully not shared..urgh not appealing to me) I went in the pool to cool off but didn’t really do much swimming. I read somewhere that most normal peoples attendance at the gym expends so little calories that they wipe all of them out on the snacks and drinks they consume there. I suspect that there is quite a bit of this sort of thing going on but that is probably me being bitter and cynical
Despite my reservation it seems there is quite a bit of variance in experience and this could be related to feedback via PEM? I guess our experience of PEM must vary since the symptom profile varies so much?