An interesting little story reported by the BBC today - link here
The story was given a quite positive spin on the BBC Radio 4 Today prog. today - it mentioned that disbelief was a common problem for ME sufferers, and that therefore a finding suggesting a viral cause for ME was a positive step for the morale of sufferers, let alone the prospect of a cure.
Showing posts with label ME. Show all posts
Showing posts with label ME. Show all posts
Tuesday, 7 September 2010
Friday, 6 August 2010
What does ME feel like?
I get asked that a lot. Here's as good an answer as I've found, although the experience extends to razors, cups of tea, cordless phones, remote controls. I even lost my car recently - took me 15 minutes to find it again.
Thanks to Leanne Hunter http://www.facebook.com/group.php?gid=172271661588 - who posted this to the Facebook UK Chronic Fatigue Syndrome group.
Toothbrush, Toothbrush, Where for art thou Toothbrush?
I search under the cupboard,
I look inside the kitchen sink,
I look inside the breadbin,
I look inside the fridge.
But my toothbrush is nowhere to be found.
I look inside my cabinets,
I look under the couch,
I look inside the fish tank,
Turn the living room inside out!
But my toothbrush is nowhere to be found.
I search around the garden,
I look inside the shed,
I check between the bed sheets,
And underneath the bed!
Where could my toothbrush be?
I search around the bathroom,
My toothbrush isn’t in the bath.
It isn’t on my storage shelf.
Or beneath the bathroom matt.
Where’s my blooming toothbrush?
I sit with hands tight on my head,
How will i brush my teeth?
I don’t want plaque on my gums,
When i go to sleep!
Now it’s getting late,
And i want to go to bed,
I give up and sigh and say goodnight,
And raise my weary head.
And then right there before me,
My toothbrush proudly stands,
In the place it’s always been,
In its own little stand!
I start to feel frustrated,
I should have looked there first,
Before the contents of my house,
We’re angrily dispersed.
What did i need my toothbrush for?
As i hold it in my hand.
All night it’s had a purpose,
One now, i can’t understand.
Why did i need my toothbrush?
What could its purpose be?
My brain flicks on, its purpose;
Was to stir my cup of tea?
Thanks to Leanne Hunter http://www.facebook.com/group.php?gid=172271661588 - who posted this to the Facebook UK Chronic Fatigue Syndrome group.
Toothbrush, Toothbrush, Where for art thou Toothbrush?
I search under the cupboard,
I look inside the kitchen sink,
I look inside the breadbin,
I look inside the fridge.
But my toothbrush is nowhere to be found.
I look inside my cabinets,
I look under the couch,
I look inside the fish tank,
Turn the living room inside out!
But my toothbrush is nowhere to be found.
I search around the garden,
I look inside the shed,
I check between the bed sheets,
And underneath the bed!
Where could my toothbrush be?
I search around the bathroom,
My toothbrush isn’t in the bath.
It isn’t on my storage shelf.
Or beneath the bathroom matt.
Where’s my blooming toothbrush?
I sit with hands tight on my head,
How will i brush my teeth?
I don’t want plaque on my gums,
When i go to sleep!
Now it’s getting late,
And i want to go to bed,
I give up and sigh and say goodnight,
And raise my weary head.
And then right there before me,
My toothbrush proudly stands,
In the place it’s always been,
In its own little stand!
I start to feel frustrated,
I should have looked there first,
Before the contents of my house,
We’re angrily dispersed.
What did i need my toothbrush for?
As i hold it in my hand.
All night it’s had a purpose,
One now, i can’t understand.
Why did i need my toothbrush?
What could its purpose be?
My brain flicks on, its purpose;
Was to stir my cup of tea?
Thursday, 1 April 2010
Worry, Illness, Guilt
I follow the blog of a young (at least in comparison to me!) teacher who has recently been afflicted by something that sounds very like ME, although I hope for his sake it isn't. Nonetheless, he's laid low at the moment, and has just had to pull out of a long-planned long distance cycle ride.
He's blogged about his feelings about all this. As can be imagined, he's utterly fed up. He feels he is letting people down, and he's worrying about his longer term future.
These are feelings I know only too well, as does everyone else with a chronic condition. I think that People With M E (PWME hereafter) have a special extra burden to bear because of the "controversial" nature of our condition. PWME have a habit of looking quite well when we aren't crashed out on a sofa. We can walk and talk and stuff just like everyone else. It's just that we can't do it for as long, or as quickly. Sometimes, if we stand up too quickly, or bend over rapidly, the game is over. I usually have a couple of really good hours per day in me, and I've learnt how to run my life so I can, to a point, choose when to use them. See me in those two hours, and I look fine.
PWME also have to deal with history of cynicism toward their illness. It was once called "yuppie flu" in the press, and derided as a licence to malinger. There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy.
What M E needs is what the medics call a "sign" - a clear identifying symptom. The classsic example of this, as well as being a classic piece of medical black humour, is "Custer's sign". This relates to victims of severe traumas like a car crash. If a male victim is found to have an erection on admission, it is an indicator that he has broken his back and may well be paralysed from the break down - hence "Custer's last stand". He's got a real problem, but at least he has no need to convince anyone of it.
M E is much more nebulous thing. Convincing the authorities we are ill is a laborious process. This leads to worry, about being believed, about whether we will have an income, about the progress of the illness. We feel guilty because we are not pulling our weight, we are leaving tasks for others, and we wonder if we have turned into malingerers overnight. On top of all this we are actually quite ill with a condition that varies, but is often highly disabling. Our thought processes are slow, we are forgetful, we are not able to organise easily.
So here's a new acronym - WIG - Worry, Illness, Guilt - for the burdens a PWME carries about. The worry and the guilt tend to worsen the condition, but are built into the experience of ME. Resolving that paradox is a key part of coping with the illness, and I wish all the M E affected readers of this blog success in finding a way through.
He's blogged about his feelings about all this. As can be imagined, he's utterly fed up. He feels he is letting people down, and he's worrying about his longer term future.
These are feelings I know only too well, as does everyone else with a chronic condition. I think that People With M E (PWME hereafter) have a special extra burden to bear because of the "controversial" nature of our condition. PWME have a habit of looking quite well when we aren't crashed out on a sofa. We can walk and talk and stuff just like everyone else. It's just that we can't do it for as long, or as quickly. Sometimes, if we stand up too quickly, or bend over rapidly, the game is over. I usually have a couple of really good hours per day in me, and I've learnt how to run my life so I can, to a point, choose when to use them. See me in those two hours, and I look fine.
PWME also have to deal with history of cynicism toward their illness. It was once called "yuppie flu" in the press, and derided as a licence to malinger. There are still vigorous remnants of that attitude to be encountered amongst medical professionals, those who decide eligibility for assistance and a lot of other folk who ought to know better. Charlatans and quacks offer ineffective and inappropriate cures, and in the UK appear to have successfully convinced Government agencies in the case of Graded Exercise Therapy.
What M E needs is what the medics call a "sign" - a clear identifying symptom. The classsic example of this, as well as being a classic piece of medical black humour, is "Custer's sign". This relates to victims of severe traumas like a car crash. If a male victim is found to have an erection on admission, it is an indicator that he has broken his back and may well be paralysed from the break down - hence "Custer's last stand". He's got a real problem, but at least he has no need to convince anyone of it.
M E is much more nebulous thing. Convincing the authorities we are ill is a laborious process. This leads to worry, about being believed, about whether we will have an income, about the progress of the illness. We feel guilty because we are not pulling our weight, we are leaving tasks for others, and we wonder if we have turned into malingerers overnight. On top of all this we are actually quite ill with a condition that varies, but is often highly disabling. Our thought processes are slow, we are forgetful, we are not able to organise easily.
So here's a new acronym - WIG - Worry, Illness, Guilt - for the burdens a PWME carries about. The worry and the guilt tend to worsen the condition, but are built into the experience of ME. Resolving that paradox is a key part of coping with the illness, and I wish all the M E affected readers of this blog success in finding a way through.
Saturday, 27 March 2010
On dealing with problems.
"If your house is flooded or burnt to the ground, whatever the threat to it, let it concern only the house. If there's a flood, don't let it flood your mind. If there's a fire, don't let it burn your heart. Let it be merely the house, that which is outside of you, that is flooded or burned. Now is the time to allow the mind to let go of attachments." Venerable Ajahn Chah.
Wednesday, 10 March 2010
ME - A Sabbatarian Approach?
I read this article today, and it made me think. Although not aimed at people with ME, it describes an approach to life that would help us all. Read it and see what you think.
Thursday, 18 February 2010
Shock late result 18 - 0
I was one of the first to be ensnared in the thickets of the new Employment Support Allowance, the benefit that is replacing Incapacity Benefit. This is paid at a reduced rate until a medical opinion has been obtained by the DSS. I attended this medical in Dundee in May of last year.
There is a list of criteria the doctor has to consider, and he submits a report. This, along with a personal submission is considered by the DSS, who award a point score based on the information before them. The magic number is 15 points - match or beat this, and the benefit is payable. I, in the finest Eurovision tradition was awarded "null points,no points, keine Punkte". This felt very much like an insult being added to my injury, and I appealed the decision, albeit with zero faith in the process.
Time passed.
I received notification of the tribunal to consider my appeal, to be held in Dunfermline, a mere 60 mile round trip from home.
I half-heartedly prepared a few arguments, wrote some notes, and set off to D'line with Mrs Lucas driving.
I was grilled for 40 minutes in an austere church hall building, and then sent to await my fate in the company of a tremulous individual awaiting his audience with these modern Guardians of the Poor Law. My mood was abyssal at this point.
I was summoned back into the presence, and a certain lightness of the tone raised some hope. I was given the decision - I had been awarded 18 points, and was clean through the qualification barrier!
Despite my utter cynicism, the system had worked, admittedly only after months of stress, but hey! I will receive at least £25 per week additional benefit, and I think it will be back-dated. Additionally, I think I can now try my luck with Disability Living Allowance, which is the gateway to eligibility for many other payments.
If anyone reading this has one of ghastly events in their future, I'm happy to discuss my experience. I think the trick is to be clear, concise, 100% truthful and assertive. I'm used to Court type settings - I used to work in the Court system, and have often had to address a Court. If this isn't one of your skills - get a representive to speak for you. The doctor on my panel was a feisty old party, and I did have to (politely) take her on a couple of times.
It's nice to know the good guys win sometimes though, and I'm delighted.
There is a list of criteria the doctor has to consider, and he submits a report. This, along with a personal submission is considered by the DSS, who award a point score based on the information before them. The magic number is 15 points - match or beat this, and the benefit is payable. I, in the finest Eurovision tradition was awarded "null points,no points, keine Punkte". This felt very much like an insult being added to my injury, and I appealed the decision, albeit with zero faith in the process.
Time passed.
I received notification of the tribunal to consider my appeal, to be held in Dunfermline, a mere 60 mile round trip from home.
I half-heartedly prepared a few arguments, wrote some notes, and set off to D'line with Mrs Lucas driving.
I was grilled for 40 minutes in an austere church hall building, and then sent to await my fate in the company of a tremulous individual awaiting his audience with these modern Guardians of the Poor Law. My mood was abyssal at this point.
I was summoned back into the presence, and a certain lightness of the tone raised some hope. I was given the decision - I had been awarded 18 points, and was clean through the qualification barrier!
Despite my utter cynicism, the system had worked, admittedly only after months of stress, but hey! I will receive at least £25 per week additional benefit, and I think it will be back-dated. Additionally, I think I can now try my luck with Disability Living Allowance, which is the gateway to eligibility for many other payments.
If anyone reading this has one of ghastly events in their future, I'm happy to discuss my experience. I think the trick is to be clear, concise, 100% truthful and assertive. I'm used to Court type settings - I used to work in the Court system, and have often had to address a Court. If this isn't one of your skills - get a representive to speak for you. The doctor on my panel was a feisty old party, and I did have to (politely) take her on a couple of times.
It's nice to know the good guys win sometimes though, and I'm delighted.
Tuesday, 24 November 2009
Swine Flu Jag
I got a letter last week inviting me to attend my GP practice for a swine flu immunization. I have been receiving seasonal flu jags for a few years now because of my diabetes, and the swine flu inoculation offer followed on from that as I am in a risk category.
It was all an interesting experience. I found myself in a packed waiting room, and, as you do, began to eavesdrop a little. I was surprised at the general level of scepticism and fear in the room. People have become very suspicious, if not of science and medicine, certainly of the motives of the politicians and civil servants who set policy. Despite that 300 or so had turned up. I'm a bit more positive. I really don't want the flu, so I went for the jab with a glad heart.
I have to say I've felt pretty ill ever since - But I imagine that the strength of my reaction to the jag is indicative of my need for immunization. It's set off a lot of symptoms that could be either flu-like of ME. I'm tired, achy, can't concentrate,blah, blah, blah.
I'm glad I've had it though. It's still better than the real deal swine flu.
My advice for ME sufferers - get the jab, but clear your diary for 4 or 5 days afterwards.
It was all an interesting experience. I found myself in a packed waiting room, and, as you do, began to eavesdrop a little. I was surprised at the general level of scepticism and fear in the room. People have become very suspicious, if not of science and medicine, certainly of the motives of the politicians and civil servants who set policy. Despite that 300 or so had turned up. I'm a bit more positive. I really don't want the flu, so I went for the jab with a glad heart.
I have to say I've felt pretty ill ever since - But I imagine that the strength of my reaction to the jag is indicative of my need for immunization. It's set off a lot of symptoms that could be either flu-like of ME. I'm tired, achy, can't concentrate,blah, blah, blah.
I'm glad I've had it though. It's still better than the real deal swine flu.
My advice for ME sufferers - get the jab, but clear your diary for 4 or 5 days afterwards.
Sunday, 22 November 2009
ME, CFS, XMRV,ESA, MPs, MSP
One of the more irritating by-blows of an illness is a surfeit of acronyms. My ME or CFS is now thought to be caused by the XMRV retro-virus. I'm quite ill, and I can't work - but apparently I'm not ill enough that the UK Government considers me eligible for Employment Support Allowance. The only treatment I have been offered was a brush with Cognitive Behavioural Therapy, not a treatment that is well suited to a retro-viral condition. Whilst it is the UK Government that pay benefit in Scotland, Health is a devolved matter, so it would appear that decisions about research and treatment will be made in Edinburgh.
I'm going to start firing off a few emails to relevant politicians, both in Westminster and Holyrood. A Westminster election is imminent, and a Scottish election is due about a year later, so I hope that the fact that my vote is up for grabs might concentrate minds. I shall post extracts of the replies here, especially those that seem particularly supportive and practical and those that are dismissive, contemptuous or ill-informed.
I'm going to start firing off a few emails to relevant politicians, both in Westminster and Holyrood. A Westminster election is imminent, and a Scottish election is due about a year later, so I hope that the fact that my vote is up for grabs might concentrate minds. I shall post extracts of the replies here, especially those that seem particularly supportive and practical and those that are dismissive, contemptuous or ill-informed.
Tuesday, 17 November 2009
Mickel Therapy?
I was a little concerned to see a comment added to my last post that appears to be an advertisement for a rather expensive course of psychological treatment for ME. At a time when the evidence for ME having a physical cause - in the form of a virus - is stronger than ever, I find myself very unconvinced by a suggestion of a psychological 'cure'.
In my previous incarnation as a Social Worker, I had plentiful dealings with Cognitive Behavioural therapies, and I know that they have a great deal to offer in appropriate cases. I was offered CBT myself through the ME clinic here in Fife, and benefited from it. The benefit, however, was not that it cured my ME, rather that it helped me to learn to live with it, negotiate with it, manage it, so that I could still achieve goals (albeit limited ones) and avoid despair. What it didn't do was 'cure' my ME, nor did I ever expect it to; psychology isn't about curing chronic physical illness.
Even if I had been tempted to try 'Mickel Therapy', the fact that it was presented to me in a spam post to my blog would have set me against the idea. It's been pushed at me in the same way as those Nigerian 'get rich quick' emails that invite you to give lots of money to someone you've never heard of. Well, I'd never heard of Mickel before today, and just like the Nigerian spammers, he's getting none of my limited funds.
I'd really appreciate comments on this. I am actually quite angry about what I see as an attempt to deceive me into parting with money that I don't really have in the vain hope of being cured of a chronic physical condition by some form of psychotherapy.
In my previous incarnation as a Social Worker, I had plentiful dealings with Cognitive Behavioural therapies, and I know that they have a great deal to offer in appropriate cases. I was offered CBT myself through the ME clinic here in Fife, and benefited from it. The benefit, however, was not that it cured my ME, rather that it helped me to learn to live with it, negotiate with it, manage it, so that I could still achieve goals (albeit limited ones) and avoid despair. What it didn't do was 'cure' my ME, nor did I ever expect it to; psychology isn't about curing chronic physical illness.
Even if I had been tempted to try 'Mickel Therapy', the fact that it was presented to me in a spam post to my blog would have set me against the idea. It's been pushed at me in the same way as those Nigerian 'get rich quick' emails that invite you to give lots of money to someone you've never heard of. Well, I'd never heard of Mickel before today, and just like the Nigerian spammers, he's getting none of my limited funds.
I'd really appreciate comments on this. I am actually quite angry about what I see as an attempt to deceive me into parting with money that I don't really have in the vain hope of being cured of a chronic physical condition by some form of psychotherapy.
Saturday, 14 November 2009
Dazed and Confused
Well, after the great excursion to Edinburgh on Thursday, yesterday was the total wipe-out I'd anticipated. Every part of me ached, the brain fog was a real pea-souper, energy levels were flat and low. And guess what - today's the same.
However, at least I know I can get through a full day if I'm prepared to pay back with interest later.
However, at least I know I can get through a full day if I'm prepared to pay back with interest later.
Friday, 13 November 2009
ME Developments
Here's a link to a great blog post that neatly summarizes the recent discovery of a retrovirus that seems a highly likely cause of ME.
I devoutly hope that this advance eliminates all the lingering and destructive prejudice that attaches to ME - yes, unbelievers, it is a real illness! I also hope it leads to a cure, and that sooner rather than later.
Here is a link to the website of the The Whittemore Peterson Institute for Neuro Immune Disease
It seems I'm probably affected by Xenotropic murine leukemia virus-related virus, otherwise called XAND.
Here's the website of XAND and XMRV.com, which looks like it will be a useful source of information.
I devoutly hope that this advance eliminates all the lingering and destructive prejudice that attaches to ME - yes, unbelievers, it is a real illness! I also hope it leads to a cure, and that sooner rather than later.
Here is a link to the website of the The Whittemore Peterson Institute for Neuro Immune Disease
It seems I'm probably affected by Xenotropic murine leukemia virus-related virus, otherwise called XAND.
Here's the website of XAND and XMRV.com, which looks like it will be a useful source of information.
Wednesday, 14 October 2009
A Great Leap Forward
All illness is horrible. Acute conditions are bad enough, but with a bit of luck you get better and life goes on. I've recovered from bowel cancer. It was quite advanced when discovered and I was very ill for a while, but I don't rate it as one of the greatest traumas of my life. When you have cancer, at least nobody tries to tell you that you are imagining it.
Chronic conditions are worse. Even if you do everything right, all you can hope to do is to minimise the effects. There is no prospect of recovery. I have three chronic conditions, depression, diabetes, and ME.
The depression was the first to arrive. It's not fun to live with. You wonder if you are imagining it, or whether you have become hysterical and pathetic. Everything in life is shades of grey; fun is a memory; dread is a constant companion.
Very shortly afterwards, I was diagnosed with Type 2 diabetes. It seems that diabetes and depression often co-occur. This knowledge made the depression seem much less of a shadowy threat, and my attitude towards it improved a lot. These days, I manage both the depression and the diabetes reasonably well, and I don't waste much time worrying about them.
That leaves the ME. I hate it with a passion. It affects everything I do every day. It makes me feel idle, stupid, ill and incapable. It bothers me far more than any of the conditions I have described, even if you add them all together.
BUT - the bloody thing is invisible. I can't really describe it to non-sufferers. 'I'm tired a lot, and I ache a lot' begins to describe it, but it goes so much further than that.
It's cost me my job, and in my dealings with the benefits system I'm left in little doubt that the system considers me to be a cheat and a liar.
After a while, self-doubt becomes a real issue. You begin to wonder if you are subject to delusions, or you have turned into an unscrupled scrounger.
And then, out of the blue, comes a ray of hope. Here's a link to a post from ChronicallyME that captures my response to this news.
Suddenly, it seems my illness is a serious, grown-up illness caused by a retrovirus. The doubters have lost. The pseudo-psychiatrists are routed. I'm not dreaming this, I'm not a self-deluding layabout, I'm actually really and properly bloody ill!
Chronic conditions are worse. Even if you do everything right, all you can hope to do is to minimise the effects. There is no prospect of recovery. I have three chronic conditions, depression, diabetes, and ME.
The depression was the first to arrive. It's not fun to live with. You wonder if you are imagining it, or whether you have become hysterical and pathetic. Everything in life is shades of grey; fun is a memory; dread is a constant companion.
Very shortly afterwards, I was diagnosed with Type 2 diabetes. It seems that diabetes and depression often co-occur. This knowledge made the depression seem much less of a shadowy threat, and my attitude towards it improved a lot. These days, I manage both the depression and the diabetes reasonably well, and I don't waste much time worrying about them.
That leaves the ME. I hate it with a passion. It affects everything I do every day. It makes me feel idle, stupid, ill and incapable. It bothers me far more than any of the conditions I have described, even if you add them all together.
BUT - the bloody thing is invisible. I can't really describe it to non-sufferers. 'I'm tired a lot, and I ache a lot' begins to describe it, but it goes so much further than that.
It's cost me my job, and in my dealings with the benefits system I'm left in little doubt that the system considers me to be a cheat and a liar.
After a while, self-doubt becomes a real issue. You begin to wonder if you are subject to delusions, or you have turned into an unscrupled scrounger.
And then, out of the blue, comes a ray of hope. Here's a link to a post from ChronicallyME that captures my response to this news.
Suddenly, it seems my illness is a serious, grown-up illness caused by a retrovirus. The doubters have lost. The pseudo-psychiatrists are routed. I'm not dreaming this, I'm not a self-deluding layabout, I'm actually really and properly bloody ill!
Friday, 10 July 2009
OK, somebody help me out here...
ME, CFS, CFS/ME, Royal Free Disease, the names for my Major Encumbrance are as plentiful as the stars in the sky, and bewilder me. I am dimly aware of the the politics behind the myriad names, and a look at the Hummingbird site will lead you to discussions about this.
For what it is worth, I don't feel that CFS - Chronic Fatigue Syndrome - as a name at all accurately describes my symptoms. We all know what fatigue feels like - if we have brought up children, worked in a demanding job, travelled across time zones, driven for too long, been ill, stressed or anxious, we have been fatigued. The cure is sleep, calm and rest, and recovery naturally follows once these needs are met.
But my "CFS" is not cured by this approach. I can sleep for ten to fourteen hours out of the day, and waken feeling worse than I did before. It can take me 30 minutes or so to become properly concious after such a sleep. "Fatigue" doesn't explain the aches and pains in my legs, my poor concentration, the brain fog, blurred vision, muffled hearing, headaches, irritable bowel, and why I feel either too hot or too cold at inappropriate times. Not all of these are constant, but I know that they are not necessarily improved by rest. Cognitive Behavioural Therapy doesn't help, and graded exercise doesn't either.
I'd be really grateful if someone could tell me exactly what the matter with me is, in simple terms.
For what it is worth, I don't feel that CFS - Chronic Fatigue Syndrome - as a name at all accurately describes my symptoms. We all know what fatigue feels like - if we have brought up children, worked in a demanding job, travelled across time zones, driven for too long, been ill, stressed or anxious, we have been fatigued. The cure is sleep, calm and rest, and recovery naturally follows once these needs are met.
But my "CFS" is not cured by this approach. I can sleep for ten to fourteen hours out of the day, and waken feeling worse than I did before. It can take me 30 minutes or so to become properly concious after such a sleep. "Fatigue" doesn't explain the aches and pains in my legs, my poor concentration, the brain fog, blurred vision, muffled hearing, headaches, irritable bowel, and why I feel either too hot or too cold at inappropriate times. Not all of these are constant, but I know that they are not necessarily improved by rest. Cognitive Behavioural Therapy doesn't help, and graded exercise doesn't either.
I'd be really grateful if someone could tell me exactly what the matter with me is, in simple terms.
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