Well, it seems there are several things going on so here’s a little update on each:
Haircut! I managed to go out on Saturday into town by taxi, to get my hair cut. It is so nice to have a proper cut as i have thick short hair it soon grows out of style into a mess, and i cannot be bothered/do not have energy to be styling it every time i get out of bed (two-three times a day!). It had been over 12 weeks since i last had it cut! I had a really nice friendly taxi driver and he took me both ways and my hairdresser was chatty too. This meant i had about two hours of conversation. I felt very lightheaded at times and knew i was overdoing it, but i REALLY enjoyed it, and being sociable 🙂 I coped ok in the salon with the noise, busy atmosphere, lights and music. I was nice to feel i was doing something in the “normal” way.
D-Ribose: RachelCreativeis back on her D-ribose, but after my three week trial i really cannot tell any definitive difference in my symptoms, although there is a lot of other things going on at the same time. I am stuck between wanting to be at my best for my sister’s wedding in 3-4 weeks so taking it just in case it helps even a little, and really not being bothered with it – particularly as i am experimenting with my diet so much. I would rather reintroduce a “new” food than introduce d-ribose and wait to see if it has any effect on my digestive system… so i think i am not going to take it for now.
Midodrine/POTS: It has been two weeks since i started to increase my dose of Midodrine. It has definitely been easier than last time i tried, with less nastly side effects. I think this is mainly due to the times i am taking it: more spaced out through the day… although i am going to try to continue upping the dose gradually a little more yet over the next few weeks. In general i think i am feeling a little stronger on this new dose as well, though my evening head and neck tension/pain has been worse. I hope this will ease off again. I may just be feeling stronger due to my digestive system improvements, who knows…
I am still getting some POTS symptoms, which i was reminded of yesterday when i was driven by my partner to a local small shop (5 minutes away in next village). I just fancied a little trip out of the house and felt ok. I walked up a couple of aisles and got what i wanted, then when standing at the till (there was a short delay as something went wrong with the items going through the till) i found myself really struggling to stand there. I sat on my walking stick seat which helped a little but just this small thing meant i had to go back to bed when i got home as i felt awful. It was partly due to “payback” from going out on Saturday to get my haircut, but still felt very much like the start of a POTS episode… there are definitely times now where i would be fine to go to a shop for ten minutes and pay at the till, but i still have to time it right and am often not as good as i imagine i will be when i actualy do it! It is easy to think i am SO much better when i am sitting at home, but in reality most things are still difficult. Baby steps…
IBS & the diet: The new diet is going well. After the fourth day of diarrhea after eating the oats, i took one Immodium (loperamide) tablet as i could not deal with it any longer and seemed to be losing weight fairly rapidly. After taking the tablet things have been much better and seem to have settled into a good pattern. My stomach is still achy and painful on occasion, but i think getting better every day. I am gradually introducing more things into my diet that “should” not cause any problems and so far so good.
I have eaten soya yogurt products, more ground nuts, fruit and seeds ground and cooked in my morning porridge, oh yes! gluten free porridge (rice and millet), avocado (my first raw fruit!), butternut squash soup, choc soya pudding, cornflakes, seed butter, rice pasta, a small piece of gluten free orange cake 🙂 …. and probably more new stuff… it has involved going to the supermarket and buying “special” products which can be pricier than the usual ones but i would not really have to do this if i was not going gluten free at the same time… after the oats i am being a bit careful about this issue, especially as my Mum finds she cannot eat gluten.
I have still not eaten any gluten since the “oats drama”, nor have i eaten any dairy products except a bit of egg in the cake. I am cooking rice and potato etc fresh and not allowing to cool (due to the potential resistant starch issues.) I am limiting very high fibre foods, or cooking small amounts of them well and mixing into the safe foods. I want to try some cheese at some point, but am not really missing the yogurt now that i am eating the soya version – just as nice.
I also want to try a bit of low fibre gluten/wheat products and see if i have a dramatic reaction like i did with the oats… i think i will wait a bit longer as things have only been going well for a few days. I need to try it out before my sister’s wedding weekend, but also with enough time to recover before going! Otherwise i may not be able to eat any of the wedding food! As a vegetarian, cheese sandwiches are staple fare at such times after all… finger’s crossed the oat thing was just a one-off, and not a sign that gluten in general is no good for me. We shall see…
Back exercise: I have been forgetting to do my back exercise recently, tut tut! I am still trying to do it though and will try harder! I think that because i am having more pain in other areas (shoulders, headaches) i am more focussed on that and don’t feel like lying on the floor and striking the pose… no excuses though!
Going out: I am going to try to go out on Friday early evening for a couple of hours to be sociable with a group of people in a cafe… cross your fingers for me to feel up to it?