Written by flybro
I’m now on day 14 or 15, of feeling really well.
Back in January I started to take 50mg of clarithomycin twice a day. My partner crushes a 500mg tab and fills 10 small capsules with equal amounts, and increases the dose to my ‘wellness/symptoms’, the most it is increased by is 50mg in one day.
I was doing OK in January, then I had a busy week at the beginning of Feb, which left me quite rough for about ten days.
Just as I was starting to feel well again I got what I thought at first, was a bout of really bad IBS. Then after being quite nauseas I thought it was a tummy bug. Six days later after having eaten eggs on 5 separate occasions, I deduced with my stunningly sharp brain it was the eggs. Doh!
Since then I have woken up everyday except one, feeling well and rested, almost energised. With my partners encouragement I have slept when I felt I needed to, and have been in bed for as much as 15 hrs in one day.
I had quite busy day yesterday and I was achey through-out the day. I thoroughly expected to wake up ill.
Well I shouldn’t have worried. The aching only allowed me a few hours sleep. Four hours later I got up, and although a little achey and tired, I still felt well.
It was a normal tired achey, feeling, exactly how you would expect to feel after an exceptionally busy day, and not much sleep. It wasn’t that CFS feeling, where you feel worse than before you went to bed.
After being up for about 3 hours I was tired and needed a kip. I had 2 short naps today and a 3 hour sleep.
Again it was a busy for me today and I am feeling well and have had minimal aching.
Other things we’ve noticed is I seem to have less IBS and inflammation pain. I am sleeping quite a lot, and up until last night I had been sleeping well. I’m still getting on off sinus discomfort, which a sinutab seems to help with.
Numbness and pins and needles seem to have lessened and I’m less dizzy and feel my muscles are more reliable. I haven’t felt feverish or fluey, and I look healthier. I haven’t weighed myself but I feel I may have put on a little weight too.
I’m taking a number of precautions which I feel also contribute, lactose free milk, minimum gluten. Freshly squeezed orange juice daily, a banana and apple most days. I rarely eat bread. I have between one and three fybogel drinks daily.
Since I’ve been ill I have had 3 weeks every year at this times of year where I have felt ‘cured’. So I’m not taking this for granted or putting it all down to having the clarithomycin.
Major helpers have been, Luminescentfeeling, the WPI, and not only my great friends at PR forums, but all the people that post there. I can not express the lift I’ve experienced thanks to this truly out-standing community. Coping with this disease has become so much easier for us, so thank you very much to luminescentfeeling, the WPI and PR.
I find it hard to understand why the ‘professionals’ would advice against joining online patient communities.
Other things in my arsenal are tramadol/zydol 50mg 4/5 times a day, these do more to help my sleeping than anything else has. Before I had these tablets I didn’t know how much all the background aching and pain had been contributing to my tiredness. Even my bladder and IBS seemed to benefit from these tablets.
The first time I took them I felt so relaxed and floaty that I thought I must’ve taken something to do with mood enhancement.
Q10 seem to be key with everything. When I stop taking them I get more achey and tired, I find it harder to concentrate.
Niacin, pantothenic acid, B6 and B12, plus taurine, I take this in the form of an energy drink.
I’ve got a really busy month ahead of me and am curious to see how well I do.
I’m still having some quite odd visual disturbances. My muscles are a little more twitchy when I lay down to sleep, although I’m sure this recent increase is due to my current increse in physical activity.
This all sounds quite positive and although I feel excited I’m trying hard not to run blindly into a crash. Rather I’m trying to enjoy this without throttling it out of existence.
I wrote the above last night. It’s now tomorrow 20:40.
I slept 4am to 7am, and 8am to 12pm, so all told seven hours. Felt like I could’ve done with another our, but thought I should get up. Again busy day, mainly up and down stairs and entertaining the little one.
My night sweats have increased a bit, and I’m a little tired, with minimal aches and still feeling good. Looking foward to falling into bed totally exhausted.
As I typed ‘totally exhausted’ I was smiling because it is such a nice feeling. Nothing like the CFS version of exhausted.
Anyway before I ramble on any more. Hope to post and chat soon.
Oh and I’ve had no luck on the WPI UK study as yet either, still hoping.
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