Lots of bits and bobs to tell you!
Firstly Exercise Update: i have been doing my back exercise daily. It is going ok, though i am only able to hold the position for about ten seconds. Most days actually my muscles are trembling from the start, but they certainly are by the time i have done it for ten seconds… not sure what i can do about that, i find muscles all over my body are constantly “fatigued” in this way and therefore probably not in any state to be strengthened. Doing the exercise is not causing me extra pain or discomfort though so i am just doing it and seeing what happens… maybe the trembling will ease, maybe not…
I have not being consistently doing any other exercises really so far. One at a time!
POTS/ME: It has been a strange time for me. I have been occasionally doing some nice things and feeling better in some ways (less POTS symptoms) but also struggling quite a lot. I can’t make sense of where i am. My IBS has been worse, which makes me feel really weak and is painful which affects my ability to get to sleep, and makes me grumpy too! Seeing as the bowels are affected/regulated by the autonomic nervous system i don’t know if the Midodrine is affecting it… it has just gradually got worse and worse, but it could be totally unrelated also… i am certainly not eating anything different and am resisting the urge to radically change my diet as it has never made any difference in the past, it only creates more hassle.
I have been trying to look at CFS/ME ability scales to see where i fit in now, but I can’t really decide if i have improved enough to have moved. I was in such a bad way before i started taking Midodrine i had no doubt that i was “severely affected” as my life had become so limited and so many things were out of reach. Getting through the necessary tasks of each day was mostly all i could do.
Now i find i have been out and about more and done things which were impossible then, like some walks when i was on holiday, going into town once after an appointment (which totally made me ill for days!), a couple of hours out socialising with strangers, reading more… but in between these things life almost seems as hard as ever and it is hard to see if any improvement has been made. I think it has, but it is very slight, for example less regular headaches and back pain, feeling better “at rest”, and being able to move more easily (ie getting up from chair, walking in house) but I also am finding it harder to know when i am overdoing myself, and can suddenly change from feeling ok to feeling awful after doing very little, say ten minutes of activity in the house, which can then take a day or more to recover from.
I think before, the POTS symptoms were always right there in front of me, stopping me doing almost everything, so it was hard to “boom and bust” as there was nothing to draw on, (it was all bust) but now i find i am doing that more but that it is so erratic i can do lots sometimes and recover fairly quickly and do very little and not recover so well… I expect the POTS symptoms are still affecting me but it is frustrating not to be able to get my head around where i am at…
I look at myself when i am feeling ok and i am out and about talking to strangers (as i was on Friday for over two hours, and as i did in January as well) and there is no way they can see how ill i have been (i find it hard to say “am”, because at that moment i am ok) and how ill i will feel afterwards. It just seems so bizarre and i feel like i am almost lying to them if i tell them i am “severely affected”, and that what they are witnessing is nothing short of miracle by recent standards! I sound like a drama queen… but two or three hours does not a normal life make, and i forget that myself when i am doing it. I am starting to dream of an evening class or something regular like that but i know i could not commit to anything that frequent or regular yet, whoa now!
I am going back to see the POTS specialist in about a month so we will see how i am by then and what she thinks about the treatment. I am still on the “starter” dose, but after trying to take a higher dose and feeling worse i am not sure where we go from here. Maybe if she tests my blood circulation/pressure and standing abilities she can tell me how much POTS is still affecting me! I think it is, but it is harder to tell for sure now that i am not flaking out at the drop of a hat 😉 I certainly still struggle to get going in the mornings and have very low stamina then and lightheadedness, which seems a POTS related thing for me. I usually get up briefly, go back to sleep then try again with more success!
Pill: I went to the sexual health doctor about the (progesterone only) pill i am taking continuously, in order to stop my periods. I have been on it since July and it has been great, one set of hideous symptoms less to think about. She had seemed keen for me to try the depo-provera injection which is given every 3 months, but when i told her how well the pill was suiting me she said that it was best to stay as i am. I agree, as the injection may not work as well and once you have it you are stuck with it for three months ’til it wears off. I do have to take a pill three times per day as i am, which can be confusing and a struggle to remember/keep track of, but i am used to it now and have my systems set up. I have only forgotten a couple of times and nothing bad happened, thankfully! She took some blood from me to test if my blood lipid levels are ok, and said if they are i can continue as i am 🙂 So that is really good. The blood test results could take a month to come back but i am crossing everything that it won’t show anything worrying as i really don’t want periods again as they made me feel so bad.
Ill-health retirement: After a flurry of effort on my part to get info to inform my decision about whether to apply for ill-health retirement, and to get my head around it, I am taking a break. I have emailed work/HR with some pertinent questions about it, which i have had no reply to yet, so i am just enjoying the break while the ball is in their court… they did say i don’t need to give an answer by a week today, which was the original deadline, as i told them it was stressing me out and too difficult to get any information, so that is something. I am hoping to devote some energy to doing some nice things this week, like creative things, instead of having to engage with all that stuff. I need to keep control of the stressy things in my life rather than letting them sap all my energy, so i am trying to do that this week!