I worked as a pyschi nurse for about sixteen years, so I should be more than aware that research based practice is more mantra than reality. Even so, I was a bit of an eejit and followed the general advice put out by the NHS on the best way to deal with fibro, cfs and ME and any other illness of the type that takes years (in my case 8 years) to diagnose. The advice was the usual “don’t smoke” (I don’t) “Don’t drink more alcohol than the Govt allows” (I don’t – I drink less) and “eat healthy” (I do) and then do lots of exercise to push past the pain and in the end all that hard work will pay off and improve your health.
Well, as I face not even being able to get upstairs without being winded and finding just everyday life makes it difficult to breathe and now I am drugged to the eyeballs with meds for lungs, heart, BP and pain, I find that it has been known since 1996 that doing aerobic exercise with these illnesses can cause and/or exacerbate heart failure. In fact an MP in Britain dropped dead after taking the exercise advice.
So all that time I spent forcing myself to push that little bit harder, walk that little bit further and psuh past the pain, wasn’t helping me at all. In fact it has likely led to me being this ill.
I have seen quite a bit of research showing the CFS/ME/FM link with heart failure, the most recent in 2006, so I was more or less resigned to this happening. But finding that the advice I so readily took back when I could do it has probably made me worse rather than better is somewhat soul destroying.
My Cardio appoitment is on Wednesday. I hope I will be allowed to discuss this with the doctor when I see him. But I bet I wont.
Heart failure deaths happen an average of 25 years earlier in people with CFS/ME/FM. A little more care and awareness would be helpful!