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Last week my partner went away for the week to work elsewhere. The week started well and i was pleased that i felt able to look after myself (bearing in mind i had been left with meals already prepared for those first few days). I managed to do some creative things one day and it felt good. My Mum was due to come visit to look after me after a few days so i made sure to pace myself and not do too much. It was hard as i felt pretty good when not doing much. It is hard to hold back when you feel a bit better than usual! In the end i did not feel as good by the time she arrived despite being so careful, which was a disappointment but also perhaps good as she was not feeling well either. We went for my hospital appointment to see the POTS/ME specialist and then rested all weekend until Monday, when my partner was home and we all went out together for the Bank Holiday Monday!

The trip to the hospital was a struggle and i was exhausted from the sustained stimulation of navigation, bright lights, noise, talking, remembering what to say at my appointment, waiting for medications (which we out of stock after half an hour waiting!) etc etc. It seemed like we were out for hours but we were home by half past eleven in the morning. Still, it was quite a trip.

The good thing is that the specialist gave me a new drug to try for my POTS symptoms. It is to slow my heart rate. Also she took my increased pain seriously and in six weeks i need to go back (to assess how this new drug is suiting me) and she will start me on another drug, all being well, which will help with pain and also, hopefully, with my itching. That one is Gabapentin (I think, after i got home i doubted i had remembered right what she said – must get her to write things down next time, as i always have this issue) which I also read can help with deep-stage sleep; that would also be welcome!

On the bank holiday we went out to a local stately home type of property  – there were various art installations (interesting!) and lovely gardens. The sun was out and i took some photos (yet to be developed). I was pushed in a wheelchair all around and it was pretty accessible even if it took two people to push me up the steeper parts! It was a nice day, but i really can’t wait to get my own wheelchair with head-rest: my neck was really painful and did put a damper on things as the visit went on, despite taking painkillers. I was glad we managed to something fun while mum was here, as i had hoped to be able to do more as i have been feeling so much better – i think that “so much better” is put into perspective when i actually try to do things though!

Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.

She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick! 

I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.

So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!

Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.

It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!

It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…

Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?

Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.

So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!

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