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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?

After several days of feeling really awful and being mostly in bed (when not trying to take the dog out and wondering, literally, if i can make it home despite being only a few hundred yards from my house) i went today to get my hair cut! I was ready to cancel yesterday (and shave my hair off as i rarely feel up to going to get it cut) but knew i only needed to be taken there and sit through it and thought i would see how i felt today. I rested and mostly lay in bed until 2pm and then felt able to give it a go 🙂

The other thing i did was i popped into Boots, which is next door to the hairdressers and got some wrapping paper to wrap my partner’s birthday and anniversary presents in – i was beginning to get a bit stressed about it as could not see when i would be well enough to get some, had left it too late to order online (knew i forgot something!) and didn’t want to ask her to get her own! They did not have a great selection but i am happy. Still have not managed to get cards for her, but think i will have to make them if i can…

I do miss being able to go shopping, but usually it doesn’t bother me hugely unless i need clothes, but it really annoys me not to be able to choose presents for people… the internet is great and helps a lot but it is nice to see what you are buying sometimes as well!

Anyway, i didn’t feel as bad as i thought in the hairdressers (kept my eyes open and chatted quite a bit -although the music was a bit sharp) and i feel a sense of achievement. Plus my hair looks one hundred per cent better than before!

If the sun would just come out so i can sit in the backyard a bit over the weekend i will be doubly happy!

(yes i am blocking the fact that i need to write my letter requesting my DLA appeal and have had not even half the energy required to engage with that task in the last week… let’s hope i have the energy to do it this week before the deadline… shame i will have to use my better moments on that odious task…)

Had planned to go out to the local Gay Pride today. Only thought about getting taxi there and back and sitting on a bench for a little while, watching the world go by and chatting to anyone i knew… it was never going to be high octane but i woke up this morning for the second time and knew there was no chance.

Have since been back to bed again and felt up to a bit of tv and lunch etc. but can’t help feeling disappointed that i could not go. Sometimes it’s easier than others when i can’t do something i want to do, depends what it is and how long it has been since i went anywhere. I have not had a good week and was really pinning my hopes on a couple of hours out today.

An old friend is getting married in August and has invited us to go, but it is being held where I grew up which is a long journey and i know i can’t go. Also we are planning to go away for an over ambitious few days away the week before so i know i will still be recovering from that, if i get to go there anyway!

It is things like that that only happen once that really get me. If i was a well-woman i would be there without question.

I was looking forward to today to feel part of the community and part of an event which i miss. My identity as someone who is chronically ill/disabled has taken over all my attention and i rarely focus as much as i used to on other aspects, such as being a lesbian. I am very interested in identity politics/issues and i find it so interesting how the aspects of our identity that we feel are most relevant are the ones that are affecting us most at any one time. I barely feel like a lesbian these days, which may seem ridiculous as i love and live with my female partner but it is not something which causes any issues for me on a daily basis (i am not visibly lesbian as i am rarely out in public with my partner), whereas i am reminded that i am unwell and unable to do so many things on a minute by minute basis.

Well i don’t feel able to be very articulate right now so will leave it there…

Maybe i will feel better tomorrow…

ME/CFS Awareness

ME/CFS Awareness

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