Following an MI in May, I've been really impressed with my cardiac care so far. After initial assessment have now been enrolled on to the local cardiac re-rehabilitation programme. This involves group sessions with exercise & diet advice, among other things. I have been assured that everything necessary will be done to accommodate the problems I have with fatigue, & the various limitations, caused by lupus. Great!
My assessor admits she knows little about lupus, but has done some research already. Impressed! I provided her with a copy of the article in the latest News & Views mag about effects of exercise on lupus patients. Which she seemed keen to read. Super!
So imagine my disappointment when I was told the course starts at 9.15am, at a busy city centre location. There are no afternoon, or even, late morning sessions. Major bummer! I haven't been able to get up before 9 am for a long time. Except when an emergency visit to the GP is required, & then it's straight back to bed afterwards.
In addition to this, the programme involves the exercise element first, & then a talk afterwards. Exercise first thing in the morning? My hands are shaking when I put the kettle on for a first cuppa, so imagine the mess on a treadmill or rowing machine. Yikes! And then the need to sit through a talk afterwards. Are they kidding me or what? I'll need to go straight back to bed for a mega dose of ZZZZZZ's.
So, is there anyone out there who has done this programme & survived? Please give me some hope that I am not going to expire on a rowing machine in front of a whole lot of oldies, as I am told I am the youngest one in the group for some time. No offence intended to my fellow participants, but I never expected to be doing this at the tender(ish) age of 45.
Aw, the joys of lupus. But rest assured I will give it a go, & test out their promise to accommodate my illness. Even if it's just to make a point, but hopefully to improve the situation for other participants with chronic fatigue.
Stay strong lupies. X
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roobarb
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Just wanted to wish you good luck!! I don't have your cardiac problems, but I did attend Pilates classes and then a Functional Restoration course run by my local NHS physios. The Pilates classes started at 8.30 a.m. which was a complete killer! The Functional Restoration course involved a little mini-circuit (exercise bike, wall press, cross trainer etc). My advice would be to take the exercises incredibly gently and only do half of what you think you can. I kept putting myself into a flare and ended up spending two days in bed. I'd thought that because everyone else on the course was much older and less fit than me, I'd be fine but I was sadly wrong; lupus has really wrecked my stamina/fitness.
Thanks Mary, that's really good advice. Like you, I've tried various forms of very gentle exercise over the years I've had lupus, but always ended up going into a flare because of it. sometimes of weeks on end.
I will think of you when the exercise bike is looming.
Hi, I attended a physio rehab programme my consultant thought may benefit me due to being 'deconditioned' - similar experience - 9.15 start exercise/physio and hydro before a tea break!
But I have to admit, having thought of this today I certainly felt better, looser joints less pain etc than when not going.
Course was 4 x weekly - I never managed to attend more than twice weekly due to complete exhaustion after, but did really feel the benefit of the individual and tailored approach and also recieved massage and relaxation with specific exercises to target problem joints.
As you know I have Vasculitis not Lupus but I have had an MI and also been through the cardiac rehab classes.
I was in a reasonable remission by the time I got to do the rehab. So found it was more my heart condition that limited me than the Vasculitis. But the OTs running the course were very good in assessing everybody's state of health and fitness and taking it into account.
I imagine the course varies from place to place but where I live in Harrogate it involved plenty of gentle warm up exercises before a circuit of exercises designed to give you a good overall (gentle) workout. Things like simply walking up and down the length of the room, aerobic type exercises, stepping up and down on a bench, a short time on the exercise bike. Finishing off with warm down exercises before the talks.
As part of my assessment they checked my BP and heartrate and made an estimate of my ability. During the exercises they kept a good eye on us and regularly re-checked heartrate and SATs to make sure you didn't overdo it. The course I was on was over about 8 weeks I think. It was designed to slowly get harder until by the end you realised you were able to do more exercise than you thought.
The talks were interesting. Some of the ones we had were on healthy eating, the purpose and side effects of the heart drugs, stress management and relaxation techniques. At the end of most talks we had a short, guided relaxation session during which a number of people tended to drop off to sleep
All in all I found the classes to be really interesting and the exercises to be useful in assessing what I was capable of following the heart attack. With nurses and OTs keeping an eye on you it also feels like a "safe place" to try a bit of exercise knowing that they wouldn't let you do anything that might cause any harm.
But as I say, I was in a good remission. And actually we delayed the rehab classes for about 9 months after the MI to allow the steroids and immunosuppressants to do their work and get me into that remission. I certainly would have struggled even a couple of months after the MI.
So I'd suggest you take it easy at first and see how you go during the classes and also see what the after-effects are. I suspect if you can't manage it they would probably allow you to postpone for a while until you feel that you're in a better state with the Lupus.
But I would definitely recommend the rehab classes as it certainly helped prove to me that I wasn't going to keel over clutching my chest if I got my heart pumping a bit
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