To cut a long story short, I was suffering that much that I thought I would finally just up the LDN to the 4.5mg. The rationale being: seeing as I already felt so awful, the side effects of my dose increase would be lost in the general awfulness (no time like the present eh?). So I did it. I took about a week to get over the LDN herx (which I am surprised I still got this far along the dose increase), and I am now feeling the better effects of it.
The better effects are:
I managed to do a little sewing yesterday and this morning (on the sewing machine - pictured below). I managed to play Words with Friends (I gave up last week and resigned or whatever it is you do... as my brain was just stuck) and win (by a few points). My sleep has improved massively... in fact this is the biggest difference!!! It's exciting. The time I am getting to sleep has been swinging round quite dramatically (as in quickly) from 2-3 a.m. to 1 a.m.-ish. When I get to sleep, I am dreaming! Dreaming big dreams... that I remember some of the next morning. I also feel as if I am sleeping rather than being in this weird state of semi-consciousness that I call sleep and others would call dozing.
I have been spending every day in bed whereas normally I try to be downstairs for a big chunk and go back to bed around 5-ish. This started before LDN and I am hoping it might go away. Recently on the good days I have manged 1 to 2 hours spread out over the day downstairs eating my meals and doing a wee bit of something (can't even think/remember what), and on the bad days I haven't managed that and actually gave in (probably shouldn't put it that way) and just lay there. I think it's hard not to start to feel down and panicky when this happens. Part of my panick and depressive feelings have been hormonal and part have been just pure fed-up-ness. I sat in bed crying - something I never do - because I am so fed up with dealing with my body and the horrid pain and nausea. I have been really nauseous... and just when I think it's gone, it comes back. I have been through periods of chronic nausea before, so it's not a new thing... just it seems to come in episodes of weeks or months and then disappear for a long time. I don't really know what that is. It seems to happen when I feel worse and have a decreased ability level. Not that my body loses any weight... but that's a whole other issue.
Anyway, I have decided, seeing as this is how my body wants to be right now, I am not going to push it. I am reining back in and giving myself this extra bed time and not making any social commitments even though I promised quite a few people I would see them in November. Oops. I feel A LOT better horizontalish (legs up) than I do standing up or sitting up. It's almost like going back to Pacing 101. I do think this also probably has to do with the autonomic issues as my body's urge to faint/blackout seems to be on a high at the moment and of course when I am more horizontal it's not causing me that issue, which feels a relief.
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