Its now Jan 2013 and not much has changed. In terms of my day to day life and CFS.
I actually wonder if my health has got a bit worse over the last 2 years. But its hard for me to be objective and measure this clearly.
My head is filled up thinking about work (property) issues and problems. And household problems. And business finances. And practical problems of so many things I need to do, but haven’t been able to :
eg :
get my hair cut (over 12 months now), visit to dentist (maybe over 2 years), go for breast screening, was due 3 years ago. (have had 3 appointments but wasn’t well enough for any of them).
With all this going on, plus my CFS neurological smptoms of “brain fog” and the “racing brain” (to name just two), this is probably why I haven’t got the ability to tell.
But I am getting more severe and longer-lasting symptoms some weeks. And it seems to take me longer to recover from my “crashes” each time.
People with CFS and ME will know what I mean by crashes. But for the benefit of others – it is more commonly called post exertional fatigue or post exertional exhaustion. And its nothing like the natural tiredness, or exhaustion, people can feel after a long hard day. Or even after doing something out of the ordinary which been exhausting. Like a marathon run. This tiredness/fatigue/exhaustion is entirely natural and a normal healthy person usually just needs adequate rest to recover from it.
But with CFS and ME it is so much worse.
The level of exhaustion, and severity of other symptoms, can be very bad indeed. And often totally out of all proportion to the amount of time and energy the person had used. On whatever they were doing. And to make it even harder to control – it can fluctuate from day to day, week to week, etc. (Making planning things often a real challenge, if not impossible at times.)
An example from my day to day life :
I find that I’m often exhausted now after having a shower and may need hours to recover. Not every time but too often.
By “exhausted” I mean – I am too weak and out of breath to be able to do much other than rest. My arms are sore and weak with the effort taken holding them up long enough to shampoo my hair. And my chest is pounding and heart racing. I took my pulse after a shower a while ago – it was 141. This is maybe 2 to 2.5 x the average rate of a fitter person ?
Yet it was a simple, short and non-stressful activity, done slowly under no pressure.
This makes me wonder how high my heart rate goes when I feel under any major stress.
eg. In November 2012 when relations turned sour with a firm of tradesmen I had used for lots of work in my properties. And spent much money with them. One of the 2 partners turned into a total scumbag and actually threatened voilence against the properties. Saying he would “rip the fittings out of all of them”. Or words similar. And this in writing to me by text message. . . Then a 2nd text message to me confirming it was “a promise, not a threat” . Unbelievable.
Just to add here : I had an ongoing account with this firm and faithfully paid them every month as had been agreed. So I wasn’t in default to them in any way. But I had been raising my dissatisfaction with some of their work, and various broken promises with time-scales etc.
And they just turned nasty.
That week I was in bed almost the entire time – and my worst symptom was feeling like an elephant was sitting on my chest. That heavy, weighty feeling.
Just awful.
But I still had to deal with the situation as best I could – from my bed. And not very well admittedly.
Its all over now and these people are out of my life.
But I hate to think that this could have worsened my condition. As I was experiencing so many bad emotions that week – fear, anger, disbelief, frustration, despair. But anger more than anything.
However they say what doesn’t kill you makes you stronger.
I certainly hope so . . . !

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