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I am starting to do some exercises… only very small ones and only when i feel up to it, so not even every day, although i will try. I have been trying to ask people (doctors, physios, alternative therapists) for ages to help me with my upper back pain and to help me strengthen my core muscles in my back in case any weaknesses that have built up there due to my life spent mostly sitting or lying are contributing to my problems, but no-one has been very helpful. I find holding myself up to sit or stand very energy consuming, uncomfortable and difficult and i am sure i am not using certain muscles enough that deal with these postures. Whether this is anything i can do anything about, i don’t know; as my muscles do not behave normally and tire very quickly and therefore cannot be strengthened when tired.
So anyway my mum has been given some physio exercises to build up core strength as she has back problems too. Also i am inspired to try by Rachel M who has gently built up some strength in her arms and shoulders and is now touching her toes!
The first things i am trying to do more often is to touch my toes, and to “hang” forward in this position a while to open up my shoulder blades as well as to stretch the backs of my legs (hamstrings?) as it is quite uncomfortable and i have to bend my knees in order to touch my toes at all. This is due to inactivity and inability to walk far and i don’t see why i cannot improve this very gently.
I also want to do the yoga “pose of a child” as this also opens up my upper back and i really feel this doing some good in this, my most painful area. It makes my shoulder blades fall upwards (!) which is obviously not a postition they are used to as they feel almost as if they get stuck there and it hurts, so i don’t do it for long! Also my circulation is not good so i cannot stay like this for long and have to get up very carefully. It seems to make my thighs ache afterwards, who knows why.
I am also doing one where i point one elbow at the ceiling and one at the floor and link hands behind my head and stretch, then swap the arms around to do it the same both sides. No picture of that one… it is a bit odd but you may be able to work out what i mean. It is also supposed to stretch the shoulders etc. This is one of my Mum’s physio expercises.
There are lots of other things i would benefit from but i am starting with these…
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/
my partner found this on the BBC news website: Sick leave staff win holiday case
seeing as i left work about May 2006 and was not paid for holidays i did not take that year, never mind since then, i would be looking at quite a lot of holiday pay!!!! Of course it would never happen and also i think not really fair on my employers who are only keeping me on the books at this point so i can continue to benefit from their HPI scheme… but it made me smile!
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!
Today i went to see the POTS Specialist again. She was pleased to hear that i have been feeling better and said it has made her New Year! I said that it had certainly made mine 🙂
They did not do the tests again so i don’t know if my heart is racing a little slower or not these days. She said it was too early to see much of a difference but they would repeat the tests again in a while.
She has doubled my dosage of Midodrine as i was on a very small dose. I now will take 5mg twice a day, morning and lunchtime. She said she hopes i will see twice the improvement! I like her enthusiasm and her positive attitude. She does not make wild promises but at the same time is optimistic and so enthusiastic about helping me.
I took the first “double dose” at lunch time and my hair went all tingly and i felt a bit shivery like goosebumps when i went for a lie down a bit later. This is the only side effect i had when i started taking the tablets 6 weeks ago and it soon passed. It is not unpleasant, quite amusing really as side-effects go!
I asked her if there was anything else i could be doing, such as leg exercises, as i had read that keeping legs toned was helpful and mine are obviously not in great shape after years of illness and limited activity. She said NO, quite strongly. She said it took years to get into this state (!) and that it will take years to get out of it and that I am not to push it or go “running marathons”… er, well that was not what i was thinking but point taken, doc! So gently does it…
I also asked if i will always be on this drug. She said that maybe i would be but that hopefully with taking the medication and increasing my activity the POTS will improve too. She said i will keep going to see her and she may adjust the dosages as we go along as required, then after a year she will assess if we can reduce the dosage or if we need to continue for longer.
This is promising as i was thinking i would maybe be stuck on it forever. The thought of it actually getting better and not needing any medication one day is beyond my wildest dreams, having only just got a diagnosis and treatment 6 weeks ago!
I am really starting to dare to hope that i can eventually return to the levels of health i had about 3 years ago, when i was working 20 hours per week. (This is a world away from where i am now, however, so it won’t happen overnight). I am certain my POTS symptoms began at this time, although they only became serious gradually about 2 years ago. The last year they have been getting noticeably more and more debilitating and have limited every activity and caused so many of my symptoms. It will be so interesting to see which symptoms are persistent once the POTS symptoms are managed/reduced. I am getting ahead of myself though…
I am getting out and about more and coping well. I still have to sit down and can feel the symptoms if i stand still for even a minute but am learning to read when it is ok to continue and when it is not! I was so happy today after seeing the specialist, as instead of getting a taxi home, i walked down the hill to a chinese supermarket that i used to love popping into and have not managed to visit for at least 3 years. I bought a few things and then bought some fruit and veg from a stall by the bus station and got the bus home! I didn’t feel ill on the bus and felt ok standing to pay in the shop as well. It is such as small thing for a healthy person to walk about for half an hour and get the bus but such a novelty to have the freedom to do that rather than get a taxi home and collapse. I saved £7 by getting the bus, so most of my shopping was free! I did still have a well earned nap this afternoon, of course! I had to stop myself buying everything just for the novelty value as i still can’t carry much without getting aches and pains afterwards.
Yesterday i went ten minutes on the bus to some shops nearby and got a few things and had lunch out, and got the bus back home, and tomorrow or sunday i am planning to go to an art gallery in town with my partner. I will use their wheelchair as i want to relax, take my time and be able to see things that don’t have a chair nearby, but to go out so often in quick succession is something i could not have contemplated 2 months ago.
I am still not walking the dog but hope to build up to doing it on days where nothing else is happening, which will be nice, as i have really missed the fresh air and nature fix that i got on good days where i could go for 20 minutes or so. Also the opportunity to take my camera and record anything beautiful i see. I have not missed the way things had become where i was out for 5-10 minutes and felt like death, sat on a bench across the road and worried that i would not make it back to the door and had to lie down for a long time afterwards to recover. Hopefully i won’t have too many of those days again.
All this hope of improvement comes just weeks before my DLA tribunal, although i may well still qualify for something it has thrown me into a quandry about whether to go or not. I do not want to get ahead of myself in my enthusiasm for change and i am not sure what i can and can’t do on a regular basis as it has only been a few weeks and i have had bad days, of course, among the good. I think i am not in line for higher rate mobilty now, as it was always borderline and i feel more able to get about short distances and more predictably, although i have not really tested it on a regular basis and have only been out when i felt at my best time of day. The lower rate care therefore is all that is left and i think this is probably out as well. It is a shame that i almost definately qualified for that until a few weeks ago, so all that back pay is lost as i am improving at the last minute! I don’t really care any more though, i am just pleased not to feel so vulnerable that i cannot look after myself properly. I am sure i will still need help with cooking sometimes and having my hair washed and other bits and bobs, but i am unsure if it is enough for DLA… I just hope i can improve enough to leave all of that behind… I will just talk to my benefits advisor people and see what they say. On the one hand there is no harm in attending the tribunal and letting them make the decision, after all i have been through to get to this point, but on the other hand i just don’t want to go through it if there is no point. I want to look to the future.