My consultant will not send me to pulmonary rehab course as he says I am not breathless enough but has been promising me, without effect, for a year that I could see a respiratory physio for advice. Each time I see him he ups my steroids, but advice on living with uncontrolled asthma is lacking.
I eventually got fed up and went to a private respiratory physio and did the asthma UK breathe easy programme.
It has been fascinating. The breathe easy programme is very informative and showed me that exercises involving arms above the head or marching made me breathless very quickly. The physio is not prepared to do exercises with me until I learn to breathe better, pace myself etc.
The breathing I have learnt well when lying down, I need to master it more when walking. The physio next wants me to learn to pace myself, from the point of view of spreading my activities out more and secondly learning how to go for a walk and get slightly breathless then adjust my pace to get my breathing back under control. I get the concepts which are simple but am failing to do either effectively, as my life is quite busy.
Have other people experimented with this.
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Homely2
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Back again. Reading your post reminded me I saw in my notes that I had refused pulmonary rehab so rang the drs to be told it didn’t matter as I wouldn’t qualify for it anyway. So, I did a little bit of searching and found this:-
My M.E demands pacing so I do little and often, it really helps instead of boom and bust ie do too much then suffer the consequences. The latter sounds like interval training whereby you stretch yourself slightly without making yourself worse whilst still improving your stamina gently. I used this a lot training horses to avoid injury, so does work!
I know you're not a horse but same principle applies- gradually increase your efforts in any sphere. Works well for my asthma too, inc. doing block breathing and singing to strengthen my lungs and muscles. Did all this by myself as written off, so calm your mind, slow your breathing get back control. Works for me! Good luck. 🤞
How very odd of your consultant. When I did PR in 2013 mine told me the modern thinking is to get people into PR early to help prevent breathlessness in later life. The tips during the educational sessions have been so useful in the following 11 years.
As I have CFS I can only cope with pacing however, I realised my movements are fast, I always march as fast as I can, open doors with gusto as though I was the well & fit person I used to be. Seems that I need to train my brain to present body situation 🤔
I’m the same peege. I was on a brilliant forum, name of which I can’t remember where I learnt a lot about pacing. I also attended graded exercise programme 1:1 which involved no physical activities whatsoever, but was all about understanding exactly how much energy you use doing seemingly relaxing activities-I swear I could get a PhD in it. But do I do it? Rarely. I charge around at top speed, clean worktops in record speed and throw the hoover around like there is no tomorrow and race around the supermarket like I’m on a 60 second trolley dash!
My present consultant when I first went to him, said his role was to rediagnose me, then refer me on to the local tertiary centre. So the last year and a bit has been concentrated on this, and I am now off to tertiary in April.
Sounds very interesting. Homely2. I think we all get into a routine and pace of doing things. And find it difficult to slow down when we are struggling. I have severe copd as well and I tend to try and go as quickly as possible to get as far as possible before I get out of breath. I need to slow down as well. Take care and hope it goes well for you. Brian
Hi, I've often thought them a great idea. I think that the moving of arms as well as legs plus controlled breathing are particularly beneficial. I'd get some but the dog's lead stops me
😂 I new you'd say that! Because of the (flipping 🤬) CFS the dog walks force me to get out exercise. She needs to exercise as much as me! If she passes before me (& I'm not too decrepit 🤪) the first thing I'll do is buy Nordic Poles, a new purpose in life.
Homely2 read up on controlled pursed lips breathing on aluk website and practise when watching TV etc,so u get used to using it when u need to.PR taught me to slow down,to accommodate my breathing - the result,at that time,was I could do more,go further as i wasn't struggling+stopping to cough = move Yr goalposts = pace yrself. Gd luck xx
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