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well there are lots of things to update you with but i have not the energy right now, but just in the meantime i wanted to share the funny “top searches” that have been showing up in my dashboard recently! I read them quite often as it is interesting to see what people type in to search and end up finding you, don’t you think? Sometimes if someone new has commented it is obvious that they wrote the “top search” but sometimes i don’t know who they are… the “best” two so far have been:
“i have been having pain in my shoulder blades for 3 months i have had physio it was great but since physio has stopped it has felt worse i get it more when i am stressed”
This made me smile because it is so LONG! I never type that much into a search engine…
“slept with sister for first time”
This one creeped me out as it stayed the top search for a long time… why they found me i am not sure. My guess is they were disappointed.
You know who you are!
POTS: I went to the hospital again the other day and saw the POTS specialist and told her that after over three weeks on the higher dose of the medication i have not yet started to feel the benefits of it, in fact i have been feeling worse than on the lower dose.
I have been having quite bad side effects, particularly affecting my temperature in bed in the afternoons, where i will feel cold despite two heated wheat bags, a hot water bottle, two duvets and central heating… only to suddenly get very hot and sweaty and covered in goosebumps after about an hour of feeling cold. The top of my head was also cold and i was having to cover myself completely with the duvet! Also i felt that my stamina and recovery time from very small activities was worse. I am not having the POTS “episodes” so much although i am still dizzy and have trouble standing for long but that it at least an improvement.
So i am now back on the lower dose. i hope that i feel the benefits i felt when i was on it before, as i am starting to doubt that it was a big improvement and that i am thinking things are seeming worse now because my hopes were raised too high. It is so hard to measure/judge how bad things are as it is so subjective and changes according to what is happening at the time.
Also i wonder where we will go from here, even if the lower dose makes me feel a bit better, if i cannot tolerate the higher dose. After hoping for double the improvement on the double dose, i am wondering again if this is it.
Interestingly at the hospital my tests when i stood were different than before i was on the medication. My blood pressure did not drop as much when i stood, and my heart rate went up and down a bit but was not as ridiculously high as before nor as consistently. So it seems i should be feeling better and more able to stand… but am i? I feel as if i can stand up a bit quicker and be less dizzy but my stamina for standing is about the same. I still get weak and dizzy quite quickly. It has not lead to the acute “episode” event which would happen regularly when out at appointments etc though and this is very good. I don’t mean to sound ungrateful, because i am, really, it just feels like a step backwards.
DLA: Well my tribunal is in two days. I am trying not to let it stress me out but i think it is taking it’s toll on me. I have been feeling quite down. An adviser woman came around to talk to me about what to expect, told me things to watch out for and what will likely happen. This has helped a lot, although it was all as expected really she did highlight some things that i had not really thought though. I do not think i will get much out of it but i just really hope that they listen and that i feel they have made a fair and considered judgement, even if i am not awarded anything. If they do not listen or allow me to explain how thing are properly it will be so frustrating, as the DWP medical was.
Holiday: The thing that is helping me to distract myself from the Tribunal is the thought of going away for a week! I will have a week to recover from the exertion of the tribunal, then my partner, my dog and I will be going for a week in a cottage a short drive up the coast. I am so pleased my partner can drive now 🙂 I just hope it does not rain all week so that i can take some photos and enjoy the views. I know it will be freezing cold but i think i can cope with that (as it is the same here after all). It is a small price to pay for not being able to travel abroad and it is a beautiful area anyway. Just a change of scenery will be so welcome and i hope to be able to spend a bit of time sitting outdoors enjoying the sea views, even if wrapped up like a mummy!
Work: also i have been summonsed to a meeting by my employer again to discuss my ongoing sickness absense (now over two and a half years!). It will be just after my holiday. I wonder if they are going to give me the final shove this time. I have a Union rep coming with me as usual so we will see what happens…
Anniversary: It is also now the TEN YEAR anniversary of when i became ill. I have not been dwelling on it too much as i have too much else to preoccupy me but i think it is affecting my mood a bit too. I said to my partner when she came up to bed a couple of nights ago:
“i think it is ten years today that i got ill”
she said “oh i didn’t realise, if i had i would’ve brought a sparkler up to bed!”
I thought this was a funny reaction and it made me laugh.
When will it stop? It’s August, not November!
Well, i survived. Yes it did feel like a question of that at times, but also there were some really good and relaxed times as well where i really felt i was on holiday and part of something. To be amongst thousands of other people at an event and also to be visiting somewhere where i have had such good times before i became this ill felt like a real achievement, and a nice trip down memory lane, even if it threw into sharp relief my limitations now compared to before… But that was no surprise and it was as i expected: I spent the majority of the time in the B&B room but did have a nice thai meal in a restaurant, went to a pub me and my partner used to like years ago when we first started going out, went to sit by the river and watch people punting (boats pushed along with poles, like in venice – something cambridge is famous for), and i managed to stay at the festival from 4pm – 11.30pm on the saturday and i really felt that i had experienced the festival, although it was a struggle for the last few hours i really wanted to stay to see the bands that were on late. I knew i was overdoing it, as it was a huge sensory experience with people everywhere, loud music sometimes vibrating through me, it was a bit cold by the end, sitting on a fold up chair that was not very supportive of my head, etc etc. The Friday i only managed to go to the festival for three hours (with ear plugs in!!), and the same on the Sunday and i did not feel good either time but at least i missed a lot of the rain as my partner got soaked to the skin several times!
It was a really good feeling to be speeding away from home on a high speed train and going somewhere new, but it was even better speeding back home, as after five nights away i was desperate to climb into my own bed, in the peace and quiet. Once i got into bed i remembered how noisy the kids next door are, but no-where is perfect!
It is nice to know that it is still possible to travel a bit and see new places but only within my normal levels of activity – i soon came up to my limits and there was no miracle burst of energy. Carrying things, walking, queuing (even with folding seat) etc were very difficult and draining and every step had to be planned, but this is how it has to be these days. Now i have heard some new music that i can listen to at a more ME-friendly volume at home and i have had a change of scenery too.
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?
My application for DLA has been turned down…
It has been so much hard work. Filling in the form took 6 weeks and felt like a lot of work, i had someone to help me and even then we only got it in the day before the deadline. The first three weeks i was completely unable to even think about it or concentrate on anything like that, and just managed to write a diary for a week as supportive evidence, then the next three weeks were spent filling it in with several short meetings with my benefits adviser who wrote it all out for me. It really exhausted me especially as we pushed to get it in in time and i was not really up to working on it. I got very down as i found it completely demoralising.
Then two weeks ago i had a medical and it was a nightmare (the same week as i had to fill in my incapacity benefit form, and with a phone call on Wednesday asking me to go on Friday i then had to push on with my IB form as i know i would be unable to finish it at the weekend, as well as reading up on what to expect at the medical). I found the medical very stressful. My partner came with me thankfully, and write notes as to what was said. We had to wait half an hour (which i believe is standard for “observational purposes”), then spend a whole hour in with the doctor.
I won’t go into ALL the details but I was feeling very weak and “past it” by the time i saw the doctor, (at 2pm, and although i did lie down before we left the house I would usually have had a nap by that time, and with the extra stress of the occasion i was not feeling good) my back was hurting, i felt very light-headed and dizzy (even sitting down) and was having trouble speaking and expressing myself clearly which led to tears of frustration as the doc was so ineffectual. The doctor could not type well (2 fingers and slow) and seemed not to be able to listen and type at the same time, which meant that he asked me the same questions over and over (and over) again, constantly getting my answers wrong and even interrupted me if i responded with anything more than a yes or no answer as it seemed he could not cope with typing sentences or deal with nuanced answers, which frankly with a fluctuating condition you are going to get when you ask questions like “how far can you walk?” “Can you do x for yourself?” etc. there are not many things i can say a definite yes or no to! I felt forced into oversimplifying my answers, as i had to on the form, which makes you feel as if you are lying, but the questions are not designed for M.E… by the end of the hour I could barely stand up and made this clear (i refused to stand to do exercises and sat instead on the bench, although he then made me stand against the wall to do a sight test (did i say i can’t see?) for a minute or two…). How that medical could not have backed up what my form said i do not know…
That took a full week to get over, during which i ached literally all over, and barely made it out of the house (very short dog “walks” when essential), had head pains and generally felt as weak and as bad as i had said on my form… actually even worse, which made me not doubt myself so much (It is easy to feel guilty when i have a better day or two and i can do things i have said that i generally cannot – forgetting how bad things are 95% of the time, and i have not even been given any money yet! It is ridiculous to feel that way when i am only trying to claim something i am supposedly entitled to…). I thought, if i could do a video diary of the impact of a one hour doctor’s assessment, maybe they would get it! I slept as much as possible. I did not feel too down, just incredibly weak and drained of all energy. I did the bare minimum in terms of dog walking, personal hygiene etc… The thought of going to Scarborough for the weekend gave me something to rest for so i knew it would be worth it if i could make it.
Scarborough was great – it could not have been better – see separate post!
Then Friday i got a letter saying that i am NOT virtually unable to walk, that i CAN prepare a meal for myself etc etc. Very occasionally this is true… most of the time however it is not. Even if i do these things, the impact that having done them has on my health and my ability to manage my symptoms and how i then feel the next few days (when i would most certainly not be able to do the aforementioned things), means that i would have been much better off not having to do them. Also, been able to do something sometimes, and not knowing how much “payback” i will get is not a lot of practical use as i can’t plan to do anything as i never know when my “better” days (or is more often the case, better hour or so) will be…
Anyway i am going to appeal and hope that at the tribunal there are intelligent people who can see the limitations that I face in daily life and hopefully they will be able to see that they fit with the DLA criteria if you have half an imagination… here’s hoping… Apparently that can take months to happen so i will just have to get the correct form, send it off and then try not to think about it too much in the meantime and hope that i feel able to cope with it and the stress it will undoubtedly cause at the time.
Here are three out of a recent film i took at the nature reserve near my house – not even on flickr yet – hot off the press!! I have only in the last year or so worked out how to use my Practica camera and it is quite cumbersome and heavy but I have some filters that i can screw onto the lens which magnify the image up to 5 times which is really great. The good thing about macros is that you can find something to take a picture of anywhere – even on your doorstep – i have enjoyed re-discovering areas that i thought i had taken pictures of from every imaginable angle… i was wrong!
Rachel M commented on my last post and said she would love to take macros so i thought i would post some for her to keep her going until that is possible…