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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 ūüôā 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.

Well, i said i would go out of the house somehow to mark my birthday, and i did. We decided Saturday was the best day for a number of factors (weather forecast, likely traffic due to Newcastle v Sunderland football game on Sunday etc), but i woke up feeling very dodgy and my partner’s assessment that i looked “a bit pale”, when i looked in the mirror, was a hilarious understatement. (Good to see those low blood pressure tablets working… NOT!). So, we crossed off the most ambitious option which was to drive to Sunderland to the National Glass Centre (best done in daylight as never been before and it was already late morning) and i got back into bed. I managed a bath in the afternoon and booked a taxi for 4.15pm, as i was determined to do something out of the ordinary. We went to the Laing Art Gallery in town (Newcastle) to quickly (It closes at 5pm!) see Tracey Emin’s Seagulls. I was happy to find them near the entrance and there was a sofa to sit on while looking at them.

I am not really a fan of hers, but i am conceiving an arty project of my own about birds (I feel it may be customary not to talk about things before you even start them, and for good reason, but hey! i like to live on the edge), which have taken on a greater significance for me recently as my illness has been more severe, so i thought in the name of research i would see what a “proper artist” was doing… We did not stay long and really there was nothing more to see than looking at the picture on the website (see link above). What really struck me was that the seagulls, all made from the same cast so pretty much identical, looked more like PIGEONS! To me the beauty of a gull is in it’s crisp edges and it’s angular elegance in the air; these were all rounded and puffy looking… and to have the same words on each one as well? It could have been more interesting to my mind, but what do i know?

So anyway, we then took a short walk to a bar as we had an hour before the restaurant opened. Firstly the only seat we could get were high bar stools which wobbled precariously¬†and were set next to a wobbly table and i felt all “at sea” and not good at all. I do best with a seat with a supportive back, but this was a whole new level of discomfort! Luckily some people moved and we got better seats and the lights were less in my eyes there too.

Then we took another short walk to the bus stop to get a bus down the hill to the quayside. We did not have long to wait and got to the restaurant no problem. The meal was nice. It was Indian food from the Kerala region. We enjoyed the starters more than the main in the end and it was nice and quiet with only one other table occupied when we arrived, although it did fill up by the time we left. We could have got a taxi to come to the restaurant to take us home but i wanted to walk along the river just a little as it is a long time since i was there, and it is nice at night. So we walked a little bit and got a taxi home from the taxi rank.

sage-being-32

 

 

quayside-321

When we got home i very quickly deteriorated and had to go and lie in bed for a while, which put a bit of a dampener on things (i walked into the bedroom and looked at the bed which i only left about 4 hours before and it looked like my enemy, which it does not usually) and i was disappointed, although i knew i had pushed my luck quite a lot considering the day started so badly.

I¬†have slept most of today so far and¬†i don’t feel too¬†good now since writing this but i am glad we managed to go out, however much of an effort it can feel. I made my partner take some pictures of me (she refuses to have many taken of her although i did get one) to mark the occasion as otherwise i will probably forget what we did by next year, as my brain is not so good on that front at the moment!

All in all i did have a very good birthday, and what made it good were all the good wishes, cards and great presents people gave me. People have put so much thought into them and that touched me a lot and made me feel valued and special to them. I still have not even found homes for them all Рyes i got that many!!! So thanks everyone, if you are reading this xx.

birthday-risotto-parsley-32

(Hmm cheesy, green & nice!)

Special thanks to my partner, who always tries so hard to give a sense of occasion even when i am feeling ill, and who made me a gorgeous parsley risotto on Wednesday for my birthday dinner even though she was dubious about the concept, but we both loved it after all!¬†¬†She got me a digital photo frame, which i love despite never wanting one before i got it and is so nice to have on when i am just sitting quietly, and a love-at-first-sight wool top! Here i am wearing it. Me, aged 32…

new-jumper-321

Well, Happy New Year to everyone reading my blog!

It is about time i posted an update about how things have been going… thing is, i have been so busy! Yes, it is time to be definite about the new the new tablets for POTS… they are doing some good, for sure!

Symptoms improved include:

Firstly and importantly, i¬† have not had to lie down in a public place, near collapse, due to a POTS “episode” (where my heart is beating very very fast, i am melting with heat radiating from me, feeling very dizzy, weak¬†and ill wondering how i will get home), which is very welcome! I suppose this means my heart is not beating as fast anymore… although it still seems to race sometimes… we will see what the machines say at the hospital when they test me on Friday!

Headaches and muscular tension in upper back, neck, shoulders and head – still there but less pain and headaches less frequent.

Blurred Vision – seems a lot better – amazing what a bit of blood to the eyes can do ūüėČ

Temperature control (less hot flushes and icy feet – although my new sheepskin slippers may also be having an effect there!)

Walking speed (short distances obviously!) and ability/speed to get up from sitting both often better.

Recovery period – i have been recovering more quickly than i would expect from such “big” things.

I am feeling better in myself, especially in the mornings and can usually wait til later for my nap if i need to.

I often have more stamina for talking to people, going out, being online or reading etc.

Things i am not sure if improved yet:

Distance i can walk and time i can stand up for: I have done a bit more of these to test them out but do soon reach my limits… have had a couple of good experiences where i felt it was a lot better but in general it is not a lot better so the jury is out on that… i am not getting to the point of collapse as quickly (see “episodes” above).

Things i have been doing over Christmas and New Year…

Travelled for seven hours door to door¬†to stay with my Mum: this was a trauma and i¬†NEVER want to see a train again, the wheelchair assistance helped (once it arrived) and if i had not missed my connection the journey would have been a bit easier… however, although i rested up, i did not feel as bad in the following days as i expected so i was very happy about that.

I stayed at my Mum’s house for a week and spent time with my sister, her boyfriend, my uncle, grandparents, dad and other people that came around and in general felt ok to chat and join in. It was nice to be so sociable!

I went out for lunch with my uncle, mum and sister.

I went into Marks and Spencer Simply Food (my sister drove me to the door and then took me home!) and i enjoyed browsing all the lovely things in there – i had no idea all the nice things they have!

A friend of mine drove me back home in her VW camper van, then stayed for a couple of nights to see in the New Year with us. The journey was lovely, sunny and frosty and so much more relaxed than the train. The seat in the camper van was really comfy and had arm rests and tilted back so that i could doze as well!

On New Year’s Eve we drove to the coast to a lighthouse and i walked¬†a little way and looked in some rock pools, but saw not one crab! Once i went there years ago and there were hundreds so i was a little disappointed… the seaweed etc was beautiful though. We then went to a pub for lunch on the way home! We were out for 3 hours! I then had a sleep and stayed up til 1am to see in 2009 with card games and shortbread biscuits… needless to say i slept nearly all of new year’s day, but happily enough as there was a good reason for it.

Since then i have walked the dog once, a short distance but it was not too hard. I have been out for a couple of hours in the evening to a social meeting of creative people, AND been back to an M&S food shop ūüėČ

Today my main task is to write this, have a bath and not much else as i don’t want to over do it too much and my headaches have been returning a little… all in all though it was been a really encouraging start to the year and although i still have just about all the POTS symptoms i had before they are less distressing and not as bad as they were. I am hoping when i go back to the hospital on Friday we can build on this good start and that this will not be it, as although it is a huge improvement from where i was before, and i am very grateful, i would like a bit more, please! (call me Oliver!)

I do not expect miracles, but have been operating at such a low level over the last couple of years that it would take several hundred percent’s increase to get back to where i could do certain things with any reliabilty, such as drive places and be able to stay there a while/walk a little then be sure to feel safe driving home, go out in evenings/socialise more often, be able to travel long distances to visit my best friends, be able to go somewhere regularly and reliably¬†like an evening class, be able to wander around a little more to allow me to go into shop or visit museums or events¬†more and to allow me to take photos again which usually involves a bit of wandering/standing to get the best shot – this last one has been very hard this year and i miss it but it would not take much improvement to be sometimes¬† possible again. I would also like to be able to take the dog out again at midday and not have to employ a dog walker to do it!

The other thing that may be coming back is the ability to do “boom and bust”… i know, i know, this is the thing that we are told never to do as people with ME! BUT the POTS symptoms have meant that i have not been able to take advantage of good days (i have not had much variation in my days – maybe operating more¬†in terms of a¬†good half hour!) to do something big, and to then suffer later. While this is not an ideal way to live, it does give us the option to do something we really want to, or to experience something important to us, even if we have to suffer the consequences, sometimes it is worth it!

So it is all good, and i have hope that this year will be a big improvement on the last. Even if this is a good as it will get, that will be a huge improvement. It is so nice to see the downward spiral of levels of health turn a corner and start to rise again, for the first time in maybe seven or eight years! You can see why i am excited!

The only depressing thing is that while I am getting a diagnosis and treatment, so many people are suffering with these symptoms and not getting any such joy. It is only because i volunteered to take part in a research study that i was diagnosed and got to see the specialist, and only because i live in the city i do that i had access to that option. I knew something was not right, that it was more than my usual ME symptoms and that it was seriously affecting my ability to carry out normal day to day activities in a very specific way. My doctor said “I just think your ME is very bad at the moment…” and would not refer me to anyone, so i took matters into my own hands. I was still shocked when my suspicions of POTS were confirmed but so relieved as well to have it acknowledged. I know of two other people with severe ME who almost definitely have POTS (i am no doctor!) but who have no hope of getting properly tested or treated. It is just another set of symptoms that they are needlessly having to cope with on top of everything else.

The drug i am taking, Midodrine, is not even licenced in the UK, so i think i am just getting it as i am part of the research being done at the hospital. It seems early days in POTS treatment in the UK, i hope things improve soon for everyone else as i have a feeling that there are lots of us out there needing help with this…

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 Рi 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.

Well, i was supposed to have CBT on Monday. I was not well enough to go, so cancelled for the second time in a row. This time, however, i spoke to the psychologist who does it and he asked if i wanted to make another appointment. I said that i felt that the chances of me being well enough at any given time are quite slim and that even when i did feel able, such as the last time i went, i suffered a bad flareup of symptoms and felt very unwell for about a week afterwards, and that i did not think this was a reasonable thing to have to go through. I said that i thought it was better that i don’t hold up his waiting list and waste appointments as i did not feel this was the right time to try to attend CBT… not that i think there will be a better time ūüėČ

 

He was very understanding. He said he had had contact from my insurance company (who had¬†“suggested” i had CBT in the first place) who wanted a written report from him. I had already told him that i was uncomfortable with them and the information they have gathered about me, some of which i felt was not particularly relevant or accurate, so he told them he would have to show me anything he wrote before he sent it. Very nice of him. So after i said i did not think i would be coming back he offered to write a letter to the Insurance company on my behalf and said he will email it to me to check beforehand. I have not had it yet and i hope he does do that. He even asked me what i wanted it to say! I said that if he could back me up that i do not seem well enough to attend and also if he felt comfortable to say that he does not feel i am in dire need of CBT right now, i would be very grateful… he has only seen me for two hours in total and that was just asking me a lot of questions and setting the scene i felt, rather than actually doing CBT… so we will see what his letter says…

Also i did contact the DLS (Disability Law Service) and explained my situation to them, that i felt bullied into CBT and worried what they would “suggest” i undergo next, or that they would stop my payments… i don’t think i should say exactly what they said but they sent me a good email of suggestions of what to do if they do continue to make claiming difficult ūüôā Thanks DLS! I feel more empowered! Thanks also Rachel for sending me the link in response to a previous post on CBT.

I probably should have told him more specifics of how badly attending had affected me last time as it was like i had used up all my cognitive function in one go answering all his questions and spent the following couple of days lying in bed and my brain was in meltdown – random thoughts flew in and out – i couldn’t remember certain things and kept thinking i had forgotten things (i probably had!) and it was all a bit traumatic. Although maybe if i told him that he would think i needed more CBT… sigh! So for now i am released from it, or at least in the process of, i am just waiting for the phone to ring though… the insurance company have not rung me for ages and it has been so nice to be left alone as they were ringing me very often for a while there before the CBT started… i suppose i will have to start screening my calls again… sigh. I always ring them back but sometimes i just am not in the right frame of mind to deal with their stupid questions…

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 Рit could not have been better Рsee 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…

ME/CFS Awareness

ME/CFS Awareness

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