Exercising with chronic illness? Anyone else?

[LaneBoy]

Just wondering if there’s anyone around to chat about gentle exercise they’re doing to build stamina and basic fitness while also suffering from chronic conditions - perhaps even more so now we are home more. I have posted in chronic illness groups before but mostly got negative responses.

I have the common combination of fibromyalgia/ME/Postural tachycardia but last year I started swimming - hardly any lengths at all but it helped a lot (as did the heat of the steam room after!) and then joined the leisure centre so I can use the gym and classes - I mainly stick to yoga though as I don’t have the stamina for more active stuff!

In lockdown I have set myself workouts including little hand weights and they’re now getting too easy but I’m in that annoying middle bit of wanting to increase difficulty but worrying about overdoing it and setting myself back.

I have Crohn's disease so for me it's all or nothing. I'm either doing 4 gym classes a week, mostly big weights, or I'm doing a tiny bit of Pilates at home once a week! I have no energy when I'm under the weather because I don't absorb vitamins thanks to my faulty gut.
I'd be really cross if anyone was negative about it. You just do as much as you can do!

Are you following the graded exercise therapy programme? That should help you work out whether to increase intensity or duration of your exercise. Unfortunately I talk a good job but I decided to double up on my exercise the other week because I was feeling good and it wiped me out for about a fortnight! I definitely think the GET programme is good for ensuring you don't push yourself.

Thank you both for replying! Bobbin I didn’t realise that about the vitamins. It must be so frustrating to sometimes have to cut right back. It’s great you still do a bit at home though (I am SO bad at Pilates - I’m not sure my core muscles even exist 😳😂)

Peter I’m not following a programme. I was actually put on the study for GET in 2012 - I was lucky enough to be referred to and diagnosed by the specialist ME clinic at St Barts, and optimistically agreed to take part, but at the time I just didn’t feel able to do much at all. I kind of went by instinct eventually - was in a much better place physically since losing my job a few years ago. I haven’t actually looked at any GET stuff since. I will do though!

Oddly it seems to be “real life” that is more likely to suddenly wipe me out than exercise - carrying a heavy bag that little bit too far, sitting outside when it’s a bit cold so I’m tensing up, walking round town too long. Whereas a 40min gym session is fine. I find that really confusing and frustrating as it still feels like I can’t live a normal life! But I am an awful lot better than I was.

I ordered the next weights up (was using little 1kg dumbbells in my routine) the other day but the ones after that are out of stock. Apparently Decathlon has a national shortage :o but at least that forces me to only increase one bit at a time!