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Please note, this post contains some moaning but it does end on a fairly positive note!!

It seems that i started to take the progesterone pill almost 2 years ago (it will be two years at the end of June, see post from the time). I have just had my blood lipids checked for the second time, and while i was there i found out more about the results from the test i had last June. I was told at the time that my cholesterol was “a bit high” but at 5.2 or 5.4 (i have forgotten exactly) it did not seem too bad. Today i found out the actual problem is that my HDL cholesterol is actually too low (0.8 where it should be over 1.1 for a woman). I apologise for not knowing what these measurements mean or are measurements of, that was not discussed with me. Only i was told it is the difference between the two amounts which is bad, rather than just a case of one being dramatically too high as i was initially told. The HDL kind that i am low in is the one that protects from heart disease, so it does not sound too good. I will have an appointment with the doctor soon as the new test results have come to discuss if things have changed and what it all means.

The reason i am being tested is that being on the type of pill i am on (it is not the same as the progesterone mini-pill, it is slightly different, and works to stop my periods completely) can affect my lipids profile. Progestins do that apparently. I am not sure if they ever tested my lipids before i was on the pill to make it clearer whether this imbalance is directly due to the pill, or actually due to my illness in general. Apparently low HDL can be associated with certain conditions. I wonder if ME is one of them, especially seeing as i have read (somewhere) that heart-related deaths are higher amongst us, not that i want to scaremonger without evidence! Anyway i will get my results in a few days and see if anything had changed/improved this year. If not i may have to stop taking the pill – not an attractive prospect with everything else i am dealing with at the moment.

I am having various (ongoing) issues in my pelvic region, mainly pain-related and bladder related (possible interstitial cystitis – i am reading up on it – it often accompanies Fibromyalgia, IBS etc) and i wonder if the progesterone pill helps or hinders that. Also i have bad itching which continues to plague me (not long until my dermatology appointment, thankfully) and i wonder if hormones could play a part in that. Both are unlikely but i am getting very confused about what could be affecting what at the moment. I also am having a lot more (constant and worse in intensity) back pain and muscular tension which is also an ongoing problem and with my skin, muscles, pelvic area and all sorts all causing at times serious discomfort i am wondering if i have developed Fibromyalgia-type symptoms… I certainly have tender points on my skin (jump when lightly touched) but are they in the right places?! It all seems possibly connected: the itch, the bladder, the other pain… maybe my brain (pain) signals are just all a bit wrong – i just hope that the doctors can intelligently help me to understand it and suggest medications that may help with more than one thing, so that i don’t end up taking many more drugs, overloading my poor body and wondering what side-effects are coming from what. Already the POTS specialist wonders if Midodrine is contributing to my itch – i really don’t want to have to stop taking it to find out…

I do want to try to find some answers, even if i don’t really want to take more drugs as things just seem constantly a struggle, the itch has really got me down and just feels like the last straw on top of all the other symptoms i have. It affects my sleep and rest in the day, creates a stress reaction which is very physical and draining and it has really been getting me down. How can i manage my basic condition when i have all this discomfort? I am certainly not getting out of the house much and my quality of life feels almost as low as it has ever been, though i find this hard to measure. I really have been feeling the last year that although the Midodrine has helped to control my POTS symptoms to some extent; they are still present, progress has plateaued and other things have come in to take their place to disable me. The years just pass and so many ongoing symptoms do not seem to be addressed; like my back problems which i have had from day one, literally. I cannot believe that a) there is nothing that could help and b) that spinal health will not affect my overall health, particularly as many problems i have a neurological and the spine is pretty important in carrying messages etc from the brain… This is a subject for another post, and i start to ramble – just needed a little rant!!

Good things: my mum is visiting tomorrow, so i can have a moan, watch her weed my garden, have some fun, and be distracted from it all for a few days – i am really looking forward to that 🙂

I had three visitors last week (one, then a couple) and it was a full on social week for me with three evenings (had a break in between) with talking and catching up. It felt quite strange in a way and i have lost some confidence in face-to-face social interaction (except with family etc) but i really enjoyed it, coped pretty well energy-wise and felt ok to interact most of the time (and i want more! I resisted the urge to chain them up and keep them here). I did have a major crushingly tight headache which lasted about 3 days solid and other flare-ups as a result of the exertion, but i feel it was worth it for the pleasant distraction from my woes and a great break from the usual routine. I certainly can’t visit anyone else at the moment, so i may try to encourage people to come to me, though it is always a gamble and a certain amount of stress/pressure. Well, we are all accustomed to the “no pain, no gain” way of life, eh?

Just a quick post to share my joy at recently purchasing a book holder to help me to read in bed. I will not put the brand name here as i try to avoid product placement, but it is like a beanbag that the book sits in. It is lightweight and quite adjustable in terms of the angle etc (though perhaps not so much as promised). I am very happy with it.

The only position i can read a book in is to be lying flat on my back, this is because my neck is so temperamental that if i put any strain on it, or hold it at the wrong angle too long i get lots of pain and it can trigger nasty headaches that last for days. My weak upper back and shoulders as well as my neck are nicely supported if i am lying down, the only issue was that i had to hold the book up on my elbows which caused muscular pain on the front of my upper arms, as well as in my wrists and hands. My little finger in particular used to go quite numb from holding the book open – some books really don’t like being open and resist with some force!

With my new book holder i do need to prop my head up slightly higher but this has been fine. The bean bag thing sits on my body and my arms can relax between page turns. (There is a plastic bit to hold the pages open). They still ache but i think that will fade or at least it will be from doing other tasks!

I am really enjoying reading at the moment, and am finding it easier than i have in the past, despite my general health levels being fairly static. I really find it helps me to get to sleep and switch off thoughts from the day, or anxieties about the next day, by taking me into a fictional world. I am currently reading two books by Tove Jansson, whose writing i absolutely love. I am considering The Blind Assassin by Margaret Atwood soon, as i have been wanting to read it but we have the hardback copy – not a problem any more!

(have just corrected my incorrect spelling of Jansson, apologies!)

So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.

I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.

But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.

I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.

The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.

I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.

We shall see, as always…

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