ME, What we are up against! Updated again!

This article has been written in today’s Telegraph ME – Fear of exercise and other papers.

I wish I was just afraid to exercise!  I am afraid of the consequences when I do exercise, pain, fatigue, dizziness to mention just a few.  The feeling of utter exhaustion from walking a small distance so much so that I can’t even speak coherently sometimes and can be unable to walk at all.  I potter about in my house usually doing more than is good for me.  The only exercise I do out of the house is walking Emily from car to classroom and reverse, often that can be very difficult and when her classroom was farther away from car park I was literally unable to do it.  As for other forms of exercise, forget it.  I used to walk everywhere, I enjoyed swimming, I am unable to do these things and hate the fact that I can’t, I am not lazy and frightened to exercise.  I hate the fact that I can’t do things with my daughter and miss out of much of her growing up because of having to rest or being too ill.  I hate that I have to take her into the school car park to be able to take her to school myself instead of walking which is better for her.  If she wants to go swimming or to do many other activities I have to say no or get someone else to take her.  I can’t play games like hide and seek with her or dance to the music she likes to do, all I can do is watch. If we do something out of the house, which is usually no more than a trip to the shop I have to use a wheelchair.  My daughter hates this as she feels unsafe due to the fact that my husband is pushing me and can’t keep a hold of her too, she gets very distressed, I used to be able to sit her on my knee, but she is too big now.  My being in the wheelchair also makes her feel she is being ignored even if she walks alongside or holds my hand.  If I over do it I get adrenaline problems and then can’t sleep and get palpitations and an upset stomach, this can happen just from a basic daily routine.  I could go on, but I fear it will be in vain.

Would people say a diabetic is scared to eat sugar, or an asthmatic is scared to breathe?

Please give us a break and write some honest articles that don’t make out people with ME are lazy, or mentally ill, work shy or fraudsters.  We are genuinely ill and deserve recognition of that, with support and understanding not continuous pressure and disbelief, which makes having the condition all the harder.  I don’t expect ME to be a top medical priority and I accept that there is little than can be done, but we are not liars and a little understanding would go a long way.

I was supposed to be having a more restful day today as I overdid it yesterday, well I over do it every day, but anyway yesterday was particularly bad, so needed an easier day.  Then I got caught up in all this and the emotional effects are as bad as physical exercise sometimes more so.  I will now do my exercise, walking up the stairs to my bedroom top try and rest, but it is unlikely to be restful thanks to all the rubbish I have just read.  perhaps they should also add we are afraid to read what is written about ME and that also affects our health and ability to function.

Rant over, well for now, I am sure it will go on in my head and make me feel worse than I already do, oh I am so cross.

Rob has read the original article The Lancet entitled Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial.  His interpretation of it was sufferers who are fearful of treatment are less likely to benefit, so CBT needs to address this. Another negative affect is sleep problems, and says that graded exercise is less effective if people aren’t supported with expectations and sleep.  This is rather different, but still saying exercise is the way to go.  It probably is if you are recovering and building back up to normal.  Most of us have ended up in a mess due to trying to push our way through the fatigue and get on with life when we were first ill and many of us still continue to do push ourselves to meet other peoples expectations rather than doing what is best for us.  I am not good at accepting my own limitations even after nearly 20 years of being ill.

I am still angry, just in case no one had noticed 😉

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