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Jackie from Derby UK
Member in Phase 3
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Posted: Fri Jun 9th, 2006 10:57 |
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Thank you, everyone.
I am now on 100mg mino. I saw my consultant today, and she has authorised the Phase 2 meds, so I can start it next week. It feels like I'm really making progress.
Incidentally, Trevor et al may be interested to know that in the UK, they are starting to prescribe low doses of the Phase 2 antibiotic for bronchioepsis. It is not quite as small a dose as the MP recommends, but my Dr sees this as possibly a small acceptance from the medical establishment of the MP principles.
I have just met someone with bronchioepsis, and will pass this info on to her.
Jackie
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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Jackie from Derby UK
Member in Phase 3
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Posted: Sat Aug 30th, 2008 12:43 |
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Just a quick update, now I'm on Phase 3. I find that as I progress on the MP, I understand it and my body's reactions so much better. I still experience the same muscle loss, fatigue, muscle ache, joint ache, headaches, and photosensitivity (altho a bit less).
My family, friends and colleagues at work are now so used to me in my scary dark glasses, avoiding the sun and outdoors, yawning a lot, being tired, lying down in the daytime....that it is no longer that remarkable. My way of dealing with it all is to just get on with life as much as I can. I am fortunate that my job is largely sedentary, so that I can carry on much as usual. Work have been good, and allowed me to use my generous annual leave in dribs and drabs, to shorten my working week. I take about 4 hours a week, which I use to have a lie down at lunchtime, go in late, and/or come home early. Because I also work a couple of evenings, this means that effectively I rarely work more than 3 hours in one stint. I also stood my ground when I moved office to say that I needed a car park space (only 12 for 100 employees). Behind me, I had the security of the Disability Discrimination Act, which here in the UK covers me, as a long-term life-limiting illness counts as a disability.
My partner has been brilliant, he does all the shopping, cooking, washing up, laundry, ironing, housework, chaufferring. I can now only drive myself around town, when before I used to jump in the car and drive 200 miles without thinking about it.
The only real difficulty is that I can't apply for a blue 'disabled' badge for my car, because I can walk more than a quarter of a mile. But mostly, my partner will drop me off and then go off to park the car.
I have had to cut down my socialising a bit. I used to be a real social butterfly, but now I find I get tired, and just want to rest without company, more of the time. One outing or visit a day is enough. Especially after work.
So pretty good, overall, despite the odd down day when I see others hiking in the Lake District, or horse riding, btoh of which I have had to give up. But it's a price worth paying.
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Sarcoidosis probably since early 1990s when I had a serious flu-type infection. Diagnosed Apr04. NoIRs Ph1 Nov05, Ph2 Jul06, Ph3 Sep06. working fulltime
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