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I was so pleased to read this letter in response to the goverment’s paltry and misleading/inaccurate response to an e-petition that i signed, asking that someone appropriate from the government attend the Invest in ME conference and, er, maybe learn something:
(but when will they start to listen…)
AND also the first anniversary of my blog!
It has been quite a year for me, health-wise, but you can read about that in previous posts…
Many people are making it into ME Awareness Week and even ME Awareness MONTH, so i thought, why not do a few blog posts throughout the month on various aspects of this illness, to do my bit to spread some very important information and awareness about ME.
I know, i know, there are hundreds of illness out there and no-one can know all about them all, so what is the point? Well, if you read the blue ribbon badges running through this post, you may get a few reasons. ME has been getting a raw deal: it is misrepresented by the media, and (deliberately in some cases it seems) misunderstood by the medical profession, and given next to no funding by the government into its cause or into treatments – despite the large number of people it affects and how severely. We are offered nothing except coping and “management” techniques – most of them really make little difference to our experience at all.
Just by reading this and understanding that it is not “all in the head” and not just about “liking to lie in bed all day” and that so much more could be done and needs to be done to give people with ME (pwME) an equivalent level of care and credibility to other equivalently serious diseases; you are helping to change general opinion about ME.
The more people that know what it is like, and can challenge people who laugh about pwME in the pub (they do – i have heard them) and who call it “Yuppie Flu” (as if we would get up and work if we needed money badly enough); the less the powers that be will be able to plead ignorance and ignore the facts – we need to turn the tide… AND, next time you meet someone with ME, or someone you know becomes ill with it, you will know enough to make them feel less isolated and that there is no support or understanding out there for them.
I will post links to my individual posts here so they are kind of organised ( i will update this as i add new posts)…
- The first one is my exploration of all my Symptoms, to try to show that ME is not just about feeling tired, there is a LOT more to it than that.
- I then did a second post to follow this up, about the Impact of those symptoms. on my ability to function/live life, and also the Things that people say to me about my illness
- Then there is: You look well!
- (maybe more to come!)
If you want to read what other pwME are writing about, and to find lots of information about ME, go to http://meaware.wordpress.com where RachelCreative has been working hard, creating these badges and the site as a hub for all of us who are “Blogging for ME Awareness!”
We have all put in a lot of effort and appreciate you coming to take a look 🙂
So, feel free to have a read, and if you have learnt anything, or were surprised by anything i have written, let me know! I am really interested to know what people who do not have ME know about it, what messages about it they have picked up along the way, and if i, or any other blogger for ME Awareness has changed/challenged any of that, or if you already had a pretty good idea already…
Also see this great & imaginative campaign to raise One Million Pounds for ME research this year: http://justfourquid.com/ Let’s do it!
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
This really made me smile and pins down something i have been bothered about in the back of my mind for some time: Why does it annoy me so much when people say “You are looking well”, or “You sound good” or whatever. I always feel a bit guilty about feeling so prickled by it, when they simply want me to be feeling well and to be improving with all their hearts and are just expressing it… but it feels like it is just a conversation to make them feel better about it; to let them off the hook; to avoid facing the truths about my illness. When i try to explain that they have simply caught me at a good moment and that in general nothing has changed, i get this look, as if to say “Why are you denying improvement? Don’t you want to get well? Be grateful for what good times you have!”
(I must say i am more tolerant of this when it comes from people very close to me who do know largely what my life is like or who see/speak to me regularly, as maybe i do sound a bit better than the last time, but i am safe in the knowledge that they know this does not mean anything more than that, that right now i can speak, but afterwards i will be exhausted and i may not be able to…)
I may look well because i have spent all the day up to this point (and probably yesterday too) making an effort to be clean, have had my hair washed, to have sloughed all the unsightly dry flaky skin off my face and moisturised, to have got out my nice clothes, rested effectively and eaten sensibly and taken a sleeping tablet, a painkiller and all the other things that i need in order to ensure i can function for this occasion of seeing you. I may even feel quite good after all this planning and preparation and be enjoying myself in this rare foray into your world, but like Cinderella, the mirage will soon fade, and i will feel so ill and have so many extra symptoms over the next few days in “payback” that i really cannot just forget this and enjoy “looking so well”. It is not your fault, of course, but how i look at the moment is irrelevant to the bigger picture. “Looking well” can sometimes feel like a curse and a barrier to understanding.
The other common exclamation is “Isn’t it lovely weather, that must really help you!” It helps me in the same way it helps anyone else, and yes, it is nice now that spring has come that i can sit in the back yard and get some fresh air and sunshine (occasionally) and have a change of the usual four walls to some al fresco four walls with birdsong and the like, but it is said to me as if it will actually make me well… My illness is not caused by depression, i actually don’t think it is perpetuated by depression (it just makes it harder to live with). To suggest that all i need is some sunshine for my severe and chronic health condition to improve is really irritating, and again i feel so guilty for being grumpy about it and usually just say, “oh yes it is nice to have nice weather” (and think “but i feel as ill as ever)”.
So now you are reading this and thinking “well i didn’t mean anything by it, what the hell am i supposed to say then? Nothing?” No of course not, but please, just ASK how i am. If you must, you can ask if the sunshine helps me(but don’t expect a sunny answer to that one – my patience is wearing thinner and thinner on this issue).
When you do ask me how i am, of course, that opens up a whole new set of issues: Do you really what to know how i am? Do you want details? Do you want to understand what my life is actually like? Or do you want a “Fine thanks” or a “Not bad today” with no details? It is hard for me to know. Even if i know you really do care and want to engage with it, how can i explain how i am? How can i quantify my wellness or illness in a way you can understand? Sometimes i can say i am “better” but do you know what that means? Do you think i am on the way to getting properly better? Or do you know i mean a-tiny-bit-that-only-a-chronically-ill-person-would-notice-as-an-improvement-and-it-could-all-change-in-the-next-five-minutes-better?
I find when asked “how are you?” these days, i just say “i am ok right now thanks” or something along those lines, because, of course i have been better, and i have inevitably been a lot worse (well i am having a conversation, so evidently not SO bad) so everything else is just in between these two… how i am changes minute by minute, hour by hour and day by day but also not a lot really changes.
So i appreciate you asking, and that you do care, but know that these questions are so loaded for me, and there is a lot more going on behind my reply…
I would like to say well done to Kevin Short and Douglas Fraser for trying and for putting so much into this fight for all of us with this illness. It may not have worked this time but I hope that the publicity generated will have some long term positive impact even if the judges decision allows so much injustice to continue in the (mis)treatment and the welfare of so many people; not just in terms of NHS treatment, but also in the denial of insurance claims, pensions, benefits etc where people are made to undertake “treatments” that are not in their best interest, just as an excuse for the company not to pay out…
I woke up so happy this morning and this is the second piece of bad news I have had…
When will all this money stuff end?
My employer has very kindly informed me that i could apply for early retirement through ill health. This does not mean they know i am eligible, only that my pension may be frozen soon as i have been off work for 2 and a half years so the opportunity to apply may then cease; so they are telling me it is an option… i think i can apply and then see if i want to take it when i know the outcome of the application.
I know nothing about this and now i have three weeks (now 2 and a half) to find out all about it and decide if i should apply. As it will involve medicals etc i do not want to bother if there is no point. Also as i only worked part time for a few years it is not a big pension that i have and it may not be worth it in terms of the effects it has on other benefits i get, such as incapacity benefit. But with the changes to incapacity benefit, is that even safe for the future and should i try for anything i get chance to have?
It seems i can apply and then be awarded either full or partial incapacity (or nothing, obviously). Partial is probably not worth much as it is a reduced amount, and if i get it. my HPI insurance payment will stop (as it is an earnings protection payment and i would be retired! HPI is worth a lot more than the partial incapacity payment). To get full i need to be seen as unable to do my current role or any other in the long term… how can this be proven with a condition like ME? I have been ill for 10 years and am unlikely to be ever fully well again, but you have to be unable to do more than 10% of previous work. As i was part time, i am not sure if they would count that level? (that would be 2 hours per week). I think i could argue now that i am unable to consistently do that and have been for a couple of years, but to say that i could not in future is tricky. I have started medication for POTS symptoms and have seen some improvement, and am unsure if more improvement will come, or not. If awarded they keep tabs on you and if you improve/work then the benefit stops, which is fair enough. Again the amount for full incapacity is not much on an annual basis, but the lump sum is quite healthy!
Another thing to consider is how safe my HPI payment is long term, can i count on that?
Does anyone have any experience of applying for ill health retirement with CFS/ME? If so any info/pointers would be welcome!
The other thing is that i have my student loans (three years worth) sitting there unpaid, as i have never earnt enough to start to repay them. I think i remember somewhere that if you retire due to ill-health you don’t have to repay! That would be nice… otherwise it is written off when i reach the age of 45 if still unable to repay, so another 13 years to wait on that score…
comments and any help welcome on this one!
I am back from my week’s holiday and i can say it was a successful trip 🙂
We went to the Holy Island of Lindisfarne, which is right up in the far North East of England, just a few miles from the the Scottish Border. It is literally an island and is cut off from the mainland by the tide twice a day. It was nice to feel cut off from the rest of the world by the tide, and also by the lack of internet access. It felt like a retreat from my usual life and a chance to do things that i do not usually get to do.
Things i wanted from the week were:
- to spend more time outdoors and feel part of the landscape, not just be a “tourist” passing by in a car, as i often do these days
- to experience being outside at different times of day, as i usually only go out in the middle of the day (if at all!)
- to take some good photos
- to have some fun!
- to go on a pub crawl! (As there are at least three pubs in the very small village).
- to learn more about the Lindisfarne gospels by going to the Lindisfarne Centre on the island
- to do creative things (painting/drawing etc)
So, which ones did i manage?
Well, i did most of them… i did not get to the Lindisfarne Centre, though i did read a bit about the Gospels and the history of the Island in books that were in the cottage we stayed in. I did not manage to do much creativity either – i wrote one haiku (see below), but there was not energy or time for other bigger creative activities after walking about the island a bit and going out for occasional pub meals, and a trip up to Scotland to a craft centre and tiny fishing village and sleeping and resting between each thing. Also i did not manage a “pub crawl” as such, though i did go into several different ones. Seeing as i don’t (can’t) drink alcohol it would not have been very authentic anyway…
I was really pleased to do some walking around the village and also along the shoreline and harbour. The shops and pubs were just metres from the cottage, which made little trips out to them manageable. I walked quite far on a couple of occasions and it was so nice to feel the ground under my feet, feel my body “working”, see the lovely views, take some photos and feel connected to the landscape, to be in it and part of it, in a way that only “walking it” can do for me.
I did not always feel great by the time i got back and i think i am still recovering from the longest walk i did on Thursday, and it is now Sunday! But it was so worth it and i had to seize the opportunity while i was in that beautiful place. It seems that, try as i might to change, the things that give me most joy are still the things i used to enjoy as a “well” person. It was a treat to be able to do it, but i wish i could find something to replace that with for it’s therapeutic & mood enhancing benefits, enjoyment and buzz that i could do almost every day, as i used to go for a walk all the time.
On that big walk i felt well and my body behaved itself and i did not feel any POTS symptoms really, despite being upright (with regular sitting rests on benches) for about an hour. I often stood still for taking pictures and it was so nice to feel good, reasonably strong and able. Although i have felt that i overdid it and am still recovering energy-wise, there would be no way i could have managed that without the POTS medication, as i was rarely able to walk for more than five minutes before and any movements were slow and so much effort. I now find that sometimes, if i pick the best time of day and have had enough rest etc etc, i can move in quite a normal way, get up from a chair quite quickly and walk at a reasonable speed, at least for a short time. That is really nice, and gives me some hope for having some nice wanders about this summer. I miss wandering!
I climbed(!) a small hill to take this (and many other) pictures. All these photos are just using my phone as i have not got my films developed yet. I hope there will be some better ones to come!
One of the main highlights of the week for me was when we went out in the evening and sat on a bench overlooking the castle in the dark. We took the torch from the cottage which was useful as there was only one street light on the way! It was very cold so we wrapped up well. It was really quiet and there was no-one around. We sat on the bench and looked out to small lights on the water, out to sea and along the coastline. There was a bunch of flowers tied to the bench and the cellophane rustled in the breeze and we could hear the water lapping gently at the shore just a few feet in front of us (though we could not see it!). The best bit was the castle. We could not see it, but every minute or so it was lit up from behind by the light of a lighthouse which was out of sight behind the castle mound. The light was green and not very bright and we could just make out the outline of the castle before it disappeared back into the darkness. I wrote a Haiku about it:
Dark castle mound: back-lit by
Rotating green light
Obviously i could not take a picture of it, as it was far too dark but now the image is cemented into my mind. You will have to imagine it too!
After the success of the evening walk, a few days later we tried a dawn walk. I set my alarm for half past six and out we went back to the same area. My body was not quite so happy about that and the dawn was grey and not very inspiring! I was hoping for a glorious sunrise but you can’t win them all… here is one picture i took on my phone once it got light enough that morning just before going (crawling zombie-like) back to the cottage for some breakfast then back to bed.
It was often cloudy during the holiday, which was a disappointment, as it limited when i could take good pictures but the sun did come out on my big walk on Thursday so i can’t wait to get the films developed and see what comes out!
I feel really happy that i managed to do so much while away, and coped with the awful bed and unsupportive chairs and being away from all my other home comforts quite well too. It took a little while to relax into it but i really feel better for having a change of scenry and a break from the usual routines. Travelling anywhere is such a challenge and it doesn’t always work out very well, so i am so pleased this was a success!
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.
Last Monday night i went to a talk given by Prof Julia Newton, who is the POTS specialist i have been seeing. The blurb for the talk is:
Standing Up for Fatigue: The Biological Basis of CFS/ME
Chronic fatigue syndrome (CFS/ME) affects approximately two per cent of the UK population, impacts on quality of life and affects a sufferer’s ability to work and live their life. Despite this, there is no diagnostic test for CFS/ME and no effective biological treatment. Julia Newton, Newcastle University, researches the autonomic nervous system, which controls subconscious activities that occur in the human body, such as respiration, bladder and bowel function, and also maintains heart rate and blood pressure. Autonomic dysfunction and particularly low blood pressure, hypotension, are a frequent finding in people with the symptom of fatigue.
(please note that i use CFS/ME, ME etc as all referring to the same thing in this post)
The fact that she is “standing up for fatigue” and trying to challenge the beliefs of the medical profession that fatigue is a symptom of physical illness (which it seems is not taken as a given at all even outside of CFS/ME and medical students don’t even always learn about it! There was a medical student there who said it was not covered at all on her course) is so brilliant for pwME (people with ME). She is so enthusiastic about it and i can’t help thinking how huge the task is that she is taking on. I hope she does not run out of steam!
I was really impressed with her enthusiasm to improve the lives of pwME, by trying to treat certain symptoms and also by researching the biological basis to the illness and raising awareness. I was also impressed by her willingness to talk about the difficulties she has had with getting funding to do biological research specifically on pwME (the Medical Research Council was mentioned), the limitations of the NICE guidelines and the views of those in the “ME/CFS is a psychological illness” camp (which she summarised in such a succinct and direct way that it made them sound so ridiculous i wanted to give her a round of applause! I really wish i could remember it word for word, but it was something along the lines of “that to focus on symptoms prevents the patient from getting on with their lives…” as if it was so easy that if we could just ignore our symptoms, they would melt away!).
I have not finished this blog earlier partly due to the fact that i was hoping that i would get a recording of the talk to listen to again to refresh my memory of exactly what was said as she said things in really interesting ways and i doubt i can quote verbatim from memory. Unfortunately that has not been sent to me so please do not take anything say as a direct quote from her lips as it is just my impression of what was said and i don’t want to cause any trouble for her! I may have got the wrong end of the stick as the microphone technology was a bit dodgy and we were not even sat in the same room as she was talking so may have missed some of what was said.
When talking about the difficulty of getting funding for ME research she named who is funding much of her current research: ME Research UK. This was very interesting information for me, as with all the recent debate over Action for ME and other charities and where their focus lies, who they may be affiliated with (eg Wessley & co) and how they are run, it is good to know that this charity are funding all this good work. I would not be getting my treatment if it was not for them as i am part of the research study. Now i know that i can safely recommend them to anyone wanting to support a charity and also can give them money knowing it will hopefuly not be wasted on recommending CBT etc. Hurray!
Hearing her talk about her research really made me realise how early days it is in terms of treatment. It seems that she is treating people with medications to try to build up a solid case before there is any chance of research funding to “prove” that it does work. I even asked a question about this on the night (which made me feel dizzy with concentration and worry that it would not come out right!) and she said it was early days but the message about POTS and it’s relation to CFS/ME was slowly getting through… I can’t help but think it may be quite a while before medication is available to anyone who is experiencing the symptoms i am having. She said that in some other European countries there is more attention paid to low blood pressure and the problems it can cause, but that in the UK it is rarely thought to be significant, and that only high blood pressure is a problem! Knowing how my low blood pressure makes me feel, and how important getting blood to the brain and other organs (like the heart!) evidently is, i am amazed at how basic and backward our medical knowledge can be.
Also on a research note, someone asked if there was evidence for mitochondrial disfunction having a part in CFS/ME and she said that yes there was (we have seen the press this week but she obviously knew before) and that Newcastle is the(?) top place for research into Mitochondrial disfunction in the UK and I think she said that they are building up a bank of blood from people with all sorts of fatiguing illnesses and that she is taking samples from everyone she can in her clinic with CFS/ME to add to it. So she really is involved in a lot of important activity for pwME.
When talking about how to change the views of her colleagues in the medical profession she said:
“Only when you meet someone with ME/CFS do you realise they have nothing to gain from having this illness…”
It shocked me to hear it said, but maybe this view is still prevalent among doctors. How can people who see the reality and impact of any chronic illness on people’s lives everyday not recognise how ridiculous this notion is? Or how hard it would be for a healthy person to keep up the pretense of feeling too ill to function properly, year after year? No wonder they think we are delusional and have false illness beliefs as you would have to be to keep that pretense up. (I know it has been said before but it makes you wonder who has the mental illness…) anyway, Prof. Newton is wonderfully sane. Her summary of the thinking behind the assertion that ME is a psychological illness sounded so ridiculous that no-one in the room could have continued to give it credit, had they before.
Someone in the audience asked “Who gets completely better?”. Again i was impressed by her direct answer. She talked about the fact that no-one knows as no long term follow up studies have been done. She also at some point talked about the difficulties of researchers using different criteria when choosing subjects to study, which complicates the findings of so much research into CFS/ME. She spoke about heart problems and higher incidence of heart related mortality in other illnesses where fatigue is a main symptom and said, again, no studies done specifically for ME/CFS but that it is likely that it is the same for us.
Usually doctors skirt around these issues and tell you you should get better at some point, they just don’t know when. The ME Specialist has stopped doing this with me now, and this is an enormous relief after being ill for so long, but even he seems reluctant to discuss long term implications of having this illness and living the lifestyle it dictates. To pretend i will ever be as well as i used to be pre-ME is like humouring me and patronising me, as if keeping the hope is the most important thing rather than accepting reality, which is easier to live with in the long run. If hope could cure me i would be cured by now, so it does not rule out improvement to accept that i will unlikely ever be a fully-well person again. To continually compare yourself to that healthy state becomes impossible anyway as after so may years you can’t really remember how it was, or quantify how much you differ from it, other than “a lot”. This has become normal for me and it has to: It would be heart-breaking to remember the freedom so keenly, all day every day.
A woman came up to me at the end who has a sixteen year old son with ME. She said i seemed articulate etc and started talking about it being an illness of high acheivers. (I do not hold with this view. I do not believe i got this illness because i was pushing myself too hard, or because i have a certain personality, although intelligent and a “swot” at school i am not a typical career defined perfectionist, in my opinion, sometimes i can be quite laid-back! My sister was 11 when she became ill and although just as intelligent was not that interested in doing her homework or being top of the class. I definately should have given up work earlier than i did, but the implications of that were so massive that, like anyone (with no diagnosis/proper medical advice), i put it off as long as possible and hoped that i would get better before that point of necessity came). I said to her that maybe “high acheivers” may not rest enough during the early stages of the illness and therefore be harder hit, but i am not even convinced of this really as everyone must just do what they can to carry on when they have no idea what is wrong with them and life as they know it is falling apart… I said to her that if you take any life and randomly stop it at a certain day, compared to an ME-life it will seem that they were either working or playing hard, as most people live life to the full in one way or another. People ask “what was happening at the time you got ill” as there are notions that stressful times can trigger ME, maybe they can contribute, and maybe this is where the “high achievers” come to grief, but so many people live stressful lives, and we all have traumatic events happen at some point so i feel that this is just a fairly irrelevant piece of the puzzle and so much more is going on to cause this illness.
Anyway, so the other thing i was thinking after she said this about the high achievers and also wished i had said was that it is another way of making it our fault that we a) got ill and b) continue to be ill. As if you are saying “If you didn’t want to be well so badly so you could get on with your high achieving lifestyle you would not still be ill. Just relax into it/learn your lesson and all will be well.” yeah well, i have looked into every cranny of my psyche to see if this is true and i feel it is not. These ideas only make us have to do more work: The amount of emotional work we have to do to cope with this illness and the devastation it wrecks on our lives is immense, naturally, as with any chronic illness; but added to that are the things we are told about our illness that somehow mean we have to look at ourselves, our personalities, our past histories and traumas, to search desperately for some reason or meaning that we are told must be there and making us ill (or just think we are); never mind all the work to understand the illness (as best we can, partly to defend ourselves), our bodies, the politics, the research being done, work out who are the good guys (ME charities, insurance companies, employers and medical professionals) and who is just humouring us while thinking we are not really ill at all.
To have a doctor say definitively that they see ME as a real and physical illness is a breath of fresh air. I can now go into her clinic and feel sure that i am being taken seriously, and that i can trust anything she tells me or advises me to do to become well (even if it does not work it is based on her expertise and knowledge and worth a try). Even with the ME Specialist i have not always felt this. He and his team have often fudged over the issues regarding psychological/biological debates, saying it is a combination of factors blah blah, go home and do some pacing and try to change your thinking patterns in a CBT way and then you will improve… (but i didn’t improve despite trying very hard to follow their advice, so i end up feeling a failure as i am obviously not doing something right… yes, more emotional work for me, very draining for a fatigued person!). I am not saying that all the pacing and “thinking” is a waste of time, it just seems to be being sold as more than it is: coping strategies). I think in actual fact the ME specialist has his head screwed on the right way and is just bound by the NICE Guidelines and other bureaucratic things to have to play along and not rock the boat too much, he probably is disappointed that he cannot do more for us patients, but not knowing how your doctor feels deep down about your illness is unsettling and is not a good basis to building a relationship of trust or “treatment” (if there was any!).
So that is all I can manage to say for now, i have not said much about the actual lecture, more about what others said and my own thoughts, but i did not learn a lot during the main lecture as i have POTS and know all about it already, pretty much, and she was starting from the basics.
On Monday i went to a talk by Prof. Julia Newton, and i am working on blogging about how that went. In the meantime, here is an article about her research, which was published in The Journal:
Standing up for fatigue
Julia Newton explains how new research is enabling us to have a greater understanding of chronic fatigue.
By Julia Newton (photograph attached), Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University
At this time of year many of us feel tired, partly due to the weather, just having celebrated the festive season, and having to contend with winter viruses. But for around 250,000 people in Britain, the symptoms are about more than just being tired a lot. This is how many people are estimated to suffer from chronic fatigue syndrome, CFS or ME/CFS.
Those who suffer from ME/CFS are so run down that it interferes with their lives and can make it hard to function at all. The severity varies, but typically people with ME/CFS say they have trouble staying on top of their responsibilities at home and on the job. Others are severely disabled and even bedridden. Furthermore, they’re not just dealing with extreme fatigue but with a wide range of other symptoms, including flu-like symptoms and chronic pain.
At Newcastle University, we are trying to find out more about the biological basis of ME/CFS. It is an illness which was, at one time, written off by many as being all in the mind. But, the Department of Health now accepts ME/CFS as a genuine medical condition. However, diagnosis can still pose a problem because ME/CFS symptoms are similar to those present in a number of other medical conditions.
Fatigue is a distressing symptom that can affect people with a range of chronic diseases or occur in those with ME/CFS. Over two hundred medical publications have suggested that people suffering from fatigue have problems with their vascular system. Our research is exploring what the biological basis of fatigue in ME/CFS is. We have shown that those with chronic fatigue also have problems with blood pressure regulation which in turn has important consequences for muscle, cardiac and brain function.
Our bodies’ autonomic nervous system is responsible for subconscious activities that occur in the body such as respiration, bladder and bowel function. It is also integral to the maintenance of cardiovascular functions such as maintenance of heart rate and blood pressure. Cases where the autonomic nervous system is not working properly, particularly in the case of low blood pressure, or hypotension, are also frequently found in people who have symptoms of fatigue. Our programme of research aims to understand the role of autonomic dysfunction in the step by step development of fatigue. We hope that this will help develop new interventions which will help target and treat these autonomic nervous system abnormalities.
When this goes wrong, the consequences can be severe. So, for instance, one of the main consequences is being unable to stand for long without suffering ill effects. Some of the difficulties that CFS/ME patients face is standing, particularly standing still, without experiencing dizziness, altered vision, nausea and fatigue. Therefore we are hoping that a thorough assessment of autonomic nervous system function might help to identify a cure, which has proved so illusive up to now.
I have been investigating fatigue in people with the autoimmune liver disease primary biliary cirrhosis. I discovered that among this group of patients, abnormalities of the autonomic nervous system contributed to their fatigue and this in itself is related to low blood pressure and abnormalities of sleep. In addition, the fatigue in these patients was associated with excess mortality, which could also be linked with autonomic abnormalities. We have found in our research a clear and significant association between ME/CFS and the symptoms of autonomic dysfunction which we hope are bringing us closer to finding better ways to treat this debilitating illness.
Julia Newton is speaking at Café Culture’s event – Standing up for Fatigue: The Biological Basis of ME/CFS on Monday 19 January at the Urban Café, Dance City from 7 to 9pm. The event is free and open to all. For more details visit http://www.cafeculturenortheast.org.uk/
Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…
Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.
I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.
Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:
- Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
- Go into town to the arts cinema, with optional meal out afterwards if stamina allows
- Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
- Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit 😉
Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!
Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!