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Well, today i am going away for a few days to the Cambridge Folk Festival! I am VERY excited and a little nervous about overdoing it (which is inevitable). We have planned everything to the last detail and packed for every eventuality so now all we can do is GO FOR IT!
I have had quite broken sleep (too excited) but sure i have had more than i think. Will just doze/deep breathe on train as much as possible and try to preserve energy… I am not feeling too bad at the moment. Last week i was like a zombie and could have slept all night and all day (which is quite unusual for me) and this week (until yesterday morning) i have been plagued by headaches but i am hoping that before any new symptoms pop up i can have a few days of calm and relaxed feeling ok-ness – everyone: CROSS YOUR FINGERS!
I have been before as i used to live in Cambridge, it was where i became ill, and i have a lot of very good memories of my time there as a well young thing, dancing the nights away! I didn’t often dance to folk music then but i hope to be tapping my feet a bit this weekend!
I will be back on Monday and will try to say how it went when i feel up to it – i am hoping that even if i don’t feel great all the time that a change of scenery will do me the world of good.
I am taking my holga (camera) and note book and endeavor to be creative as much as possible while i am there! A haiku or two at least 😉
see this excitment building video!
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…
Warning! This blog discusses women’s issues, periods etc!
Last week i went to see what i thought was a hormone specialist… it turned out to be the sexual health & contraception clinic – which was ok as my main query was about my periods…
My main issue is that my periods really drag me down. This is nothing new, but the last 6 months or so i have seen a definite pattern in my symptoms, in that i have a “better” week (or sometimes just a few days) just before my period (when i can feel pretty good “at rest” and even manage to go out and about a little bit without major payback) and then just before my period i start to feel bad, feel very low in energy and everything is a struggle during my period, with all my bad symptoms of headaches, dizziness, muscle weakness, achiness, sensitivity to noise, etc etc and then it seems to take another couple of weeks to gradually get over the event and it all starts again.
The doctor i saw was a little confused as most people feel worse the week before, but has given me Norethisterone, a progestogen only pill to take, starting on my 5th day of my period and to take continuously (i am going back in 6 weeks or so for a check up). If it seems to agree with me, she said we could consider the Depo Injection… (very scared of that as heard it can have bad side effects and once you have it it can’t be undone). The idea is that my periods will cease and won’t drain me so much, although there may be some spotting and side effects (weight gain, bloating, spots, dizziness – just what i need!). They don’t know how it will affect me until i try so i am giving it a go, although not without some concerns. I am just hoping i don’t miss out on my few good days a month as a result!
I am willing to try it now as what i used to consider to be an ok/average day is now the highlight of my month and my general level of functioning has gone way down. My hormones may not have much to do with this but my period seems to be just one more burden on top of all the others that i really could do without. Unfortunately there does not seem to be a magic answer so i may be making things even worse but don’t know til i try.
Progestogensare like natural progesterone but are synthetic hormones and are not without controversy and i am not entirely comfortable with “polluting” my body and messing about withit when it is evidently already struggling to function, but it is worth a try. I also hate taking things then wondering if my odd symptoms are due to side effects of a drug or if they are the ME, and not knowing how i would be feeling without taking it…
Dr Sarah Myhill does not recommend people with ME take the pill, but she does not really talk about what to do about period hell either so i don’t see any obvious alternatives! She talks more about contraception, which is irrelevant to me as a lesbian. She does say Progestogens can cause depression. I have not been depressed the last couple of months so will be suspicious if i suddenly get down. I have been taking Agnus Castus for a long time, which is a herbal remedy and which definitely helps with keeping periods regular and i think make mine last for less days as well. I had stopped taking it last month in case the hospital wanted to take any blood tests and my period was late this time, which has not happened in a long time, so i think it certainly is worth a try for anyone not on the pill who has issues with PMT etc. (Kira brand has seemed best to me).
So, my period came today! I am so happy as it is 3 days late and have been feeling very premenstrual, as well as having bad (and different to usual) leg pains – from my hips and down the sides into my knees and beyond! Also i usually get bleeding gums when i clean my teeth around the time of my period (who knows why) but yesterday when i got out of bed in the afternoon and sat in the next room chatting to my girlfriend, my gum spontaneously started bleeding into my mouth! It stopped quite quickly but was quite copious there for a minute. Yuk. I even started looking through the kitchen cupboard yesterday and throwing out all the out of date rice, dried beans, etc. “Nov 2007? looks ok… 2006 throw it out!” typical PMT behaviour…
This means that i need to start taking the new tablets on Saturday… 3 times a day! Better make a ticky chart or i will forget whether i have taken them or not… I am just hoping that i will never have to be that woman again who constantly talks about her periods, when she is due, how bad she feels, blah blah so boring, but recently whenever anything is happening (an appointment, visitor, etc) i have to check my diary and say whether there is any chance i will be feeling even half up to it… but how much of a long term solution is taking this pill i wonder? Surely i can’t just take it forever? How messed up will my hormones be after taking it? Hmm.
The other thing that i wanted to talk to the hormone specialist about (turns out i need to see a separate Endocrinologist for this) is to discuss the chapter in Fatigued to Fantastic! about hormones and ME (see previous post). The doctor i saw at the sexual health clinic said that there is a doctor at a local hospital who is interested in people who are slightly sub-optimal in various hormones and the effect that can have but that she did not think they would try treating me even if i am as they tend to have a “hands off” approach. This means “do nothing in case you are sued” approach, or a “NICE guidelines say NO if you have ME” approach, i can only assume… So if Dr Teitlebaum is right about hormones and ME/CFS then i will probably never know. I could try to get referred to that doctor but i don’t expect there is a lot of point in wasting my energy and taxi money. This is a bit disheartening as i am doing everything else in the book (taking supplements for my mitochondria etc) but if there is a hormonal problem holding me back i can’t do anything about it myself… what is the point of trying to help myself if i can’t get any professional support/expertise?