Daily Post – 8/6/11 – returning from a break…

I have well and truly fallen off the ‘post a day’ wagon. I felt itwas getting too repetitive, always going on about the same old daily problems with HNPP. The goog thing about not reporting them is that I don’t dwell on it so much, which allows me to concentrate on more positive life events, hobbies, and life in general.

The garden is growing well, mostly all perenials which need little attention. I have to admit to avoiding any heavy work, it’s not just fear of injury, it’s avoiding injury. I’ve used that injury word… if only the CBT freaks at the pain management programme could see this… I refuse to use the word flare, I’m not a pair of 70’s trousers, or a coronal mass ejection. I don’t attribute a great emotional store in the word injury, it’s just a word which describes the type of problems that occur in HNPP. It is how all medical texts refer to it. It’s simple and descriptive, and accurate. Oh dear, I seem to have gone off on one of my ‘bash the medical profession’ spiels.

Asthma has been pretty bad, which reminds me, I must make an appointment to see the asthma nurse. More than ever the hay-fever season has caused an increase in symptoms (heck, that flare word passed through my noodle yet again). My peak flows have sometimes been as low as 150 lts/min, which is pretty low considering for my age and height they should be around 650 lts/min. But I have never had peak flows as high as that. Even years ago, when things were not this bad, my best peak flows were around 450. I can sometimes get up to that when the asthma is settled, and on maximum medication, salbutamol, salmeterol, ipratropium, and regular steroid inhalers, but it’s quite rare. Usual morning puffs are in the 210- 280 range, medicated (without salmeterol which causes me too many cardiac arrhythmias) I can get upto 350 if I’m lucky. It actually hurts my ribs too much to blow too hard, so maybe that is partly keeping the peak flows on the lower side of my ‘normal’.

Trigeminal neuralgia has been rearing it’s ugly head again. Along with that is the resurgence of vertigo and increased levels of tinnitus. It would be too much to say they’re related, but with having an underlying demyelinating neuropathy I do have to wonder. This could do with some investigation, but I’m loathed to make a Neurology appointment, I still cannot trust them. I should contact the South West Neuromuscular Network, and ask for advice. Perhaps I should do that soon.

Time to do something else with my day… tata for now (@10:07)

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