Patryk is my new physio treating my scoliosis. We are having sometrouble trying to teach him about my ME though. I'm sure he means wellbut its a difficult juggling act trying to manage two conditions with completely different treatment requirements; with Scoliosis yoursupposed to undergo extensive physio to correct the bone structurewhilest one of the basic symptoms of ME is a very negative responce to overexertion.
He was hoping that a gradual increase in exercise might actually help my ME as typically in ordinary people who are recovering from illness it does due to increased blood flow, etc. However in my long
experience of ME this is not the case for me!
We had trouble persuading him to do home visits at all as I'm not well enough for car drives atm. He didn't think he could do a proper job at my house. However we have managed to persuade and hopefully it'll only be tempory. I hope he is pleased with the little recommended exercises I have managed to do
Saturday, 16 July 2011
Sunday, 10 July 2011
The welfare of lab animals
Even if the XRMV scandal hasn't successfully proved anything about the cause and genuiness of ME (as furthur studies and reports keep saying the original study was faulty), it has certainly proven in my mind how inefficiant biomedical research using animals is.
a) Because of the risk of contamination
b) because of the risk of animal disease spreading to humans
The UK government is currently holding a public consultation on how to implement a new EU Directive into UK law.
Not only is vivisection inefficiant if this EU Directive was translated word for word into UK law it could lower lab animals welfare due to the fact the spefications of the directive are lower than current UK standards. To quote the RSPCA 'animals may undergo more suffering and pain, inhumane methods of killing may be allowed and many labs could go years without being inspected! We cannot let this happen!
The government could easily allow our higher standards to remain, however we believe they are cutting standards just to reduce regulation!'
Please voice your opinion on this important issue before 5th of September, even if you agree with vivisection!
http://webarchive.nationalarchives.gov.uk/+/http://www.homeoffice.gov.uk/documents/cons-2009-animals-research/
a) Because of the risk of contamination
b) because of the risk of animal disease spreading to humans
The UK government is currently holding a public consultation on how to implement a new EU Directive into UK law.
Not only is vivisection inefficiant if this EU Directive was translated word for word into UK law it could lower lab animals welfare due to the fact the spefications of the directive are lower than current UK standards. To quote the RSPCA 'animals may undergo more suffering and pain, inhumane methods of killing may be allowed and many labs could go years without being inspected! We cannot let this happen!
The government could easily allow our higher standards to remain, however we believe they are cutting standards just to reduce regulation!'
Please voice your opinion on this important issue before 5th of September, even if you agree with vivisection!
http://webarchive.nationalarchives.gov.uk/+/http://www.homeoffice.gov.uk/documents/cons-2009-animals-research/
Thursday, 9 June 2011
Emily's appeal
My name is Emily. I developed the neurological condition Myalgic Encephalomyelitis (ME) when I was 6 years old. In April 2011 I turned 30. I still have ME.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info.
ME coloured every aspect of my childhood; it painfully restricted my teens and it completely destroyed my twenties. Now, as I move into the next decade of my life, I am more crippled than ever by this horrific disease.
My doctors tell me that I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now - it's like that every single day. After all these years I still struggle to understand how it's possible to feel so ill so relentlessly.
My reaction to small exertions and sensory stimulation is extreme. Voices wafting up from downstairs, a brief doctor's visit, a little light, all can leave me with surging pain, on the verge of vomiting, struggling with each breath and feeling I'll go mad with the suffering. Of course it can also be as bad as this for no particular reason - and often is. I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison.
My days and nights are filled with restless sleep interspersed with injections, needle changes (for a syringe driver), nappy changes (as well as experiencing transient paralysis and at times being blind and mute, I am doubly incontinent) and medicines/fluid being pumped into my stomach through a tube. My life could be better if I had a Hickman line (line which goes into a major vein and sits in the heart) for IV drugs and fluids, but such a thing would likely kill me. I'm on a huge cocktail of strong medications which help, yet still most days the suffering is incomprehensible. During the worst hours I may go without the extra morphine I need as I feel so ill that the thought of my mother coming near to administer it is intolerable - this despite pain levels so high that I hallucinate.
I live in constant fear of a crisis driving me into hospital; our hospitals have shown such lack of consideration for the special needs of patients like me that time spent in hospital is torture (eased only by the incredible kindness shown by some nurses and doctors) and invariably causes further deterioration.
Many days I feel utter despair.
But, unlike some sufferers, over the long years in which I've had severe ME (the illness began mildly and has taken a progressive course) I have at least had periods of respite from the absolute worst of it. During those periods I was still very ill, but it was possible to enjoy something of life. So in these dark days I know there is a real chance of better times ahead and that keeps me going.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me - severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for - but I don't. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.
And that is why I tell my story; why I fight my painfully debilitated body to type this out on a smartphone one difficult sentence at a time and to make my appeal to governments, funders, medical experts and others:
Please put an end to the abandonment of people with severe ME and give us all real reason to hope."
By Emily Collingridge 2010-2011
You can support Emily and everyone with severe ME by joining the "Severe ME/CFS: A Guide to Living" Facebook group http://www.facebook.com/group.php?gid=114380158590669. Both sufferers and non sufferers welcome! See also www.severeME.info.
Sunday, 5 June 2011
Newbies
I have a new laptop, a mac pro 2. Its very luxurious. So quiet like a sports car, and so fast. I particularly like the pages application. It comes with lots of handy templates and looks as if it will be very helpful for my campaigns. I'm also planning to write some novels with it. 
I also have a new cross roads lady. She comes once a month to help me look after my demented guinea pig while my parents go out. That I'm not so pleased about. I mean I don't mind her personally, she reminds me of a Eliza Dolittle song, just don't like feeling like a child or being reminded how disabled I am
I also have a new cross roads lady. She comes once a month to help me look after my demented guinea pig while my parents go out. That I'm not so pleased about. I mean I don't mind her personally, she reminds me of a Eliza Dolittle song, just don't like feeling like a child or being reminded how disabled I am
Wednesday, 18 May 2011
Burst our bubble campaign
www.investinme.org/IiME%20ME%20Awareness%20Burst%20Our%20Bubble.htm
Invest in ME are running a campaign this month (ME awareness month) called 'Burst our bubble'. The inspiration stems from the idea that ME sufferers live in a bubble. For more info see link
Goings on at number 6 Plummer Close
Since starting the LDN again I've begun to recover from my latest nausea-initated relapse. Afterwards I'd felt shattered, dizzy and full of fog; dry, flemghy mouth; unable to speak; hypersensitive to light and sound; headachy; and I even had some leg muscle pain which I haven't for years! Though it wasn't that bad and could have been due to cramp. Since the LDN though my dizziness, fog, tiredness and headache have improved. I've managed a little blogging, foruming and sewing, spoken a few words and sat in the garden.
I've lost a lot of weight and am struggling to put it back on again due to tiredness and my stomach has shrunk so I become full quickly. Its a struggle to eat even a normal amount to stay alive. Apparently if I continue the way I am my body will start turning my muscle into energy instead. So its important I maxamise every mouthful I take calorie-wise.
I've got to drink fortisips which are utterly revolting.
I've also been consuming a lot of stinging nettles!! I was advised to do so by a herbalist whom my Mum met at a workshop. (I intended to go, but was too ill, so my Mum went in my stead.) I have nettle and apple juice tonic for breakfast and nettle soup for tea. They're rich in many vits and minerals including A + C, potassium, iron, and calcium
I've lost a lot of weight and am struggling to put it back on again due to tiredness and my stomach has shrunk so I become full quickly. Its a struggle to eat even a normal amount to stay alive. Apparently if I continue the way I am my body will start turning my muscle into energy instead. So its important I maxamise every mouthful I take calorie-wise.
I've got to drink fortisips which are utterly revolting.
I've also been consuming a lot of stinging nettles!! I was advised to do so by a herbalist whom my Mum met at a workshop. (I intended to go, but was too ill, so my Mum went in my stead.) I have nettle and apple juice tonic for breakfast and nettle soup for tea. They're rich in many vits and minerals including A + C, potassium, iron, and calcium
Tuesday, 10 May 2011
Twas' a long road and a hard one
Nausea has dominated my ME. In fact its how it seemed to be triggered.I had a mysterious enterovirus when I was 8. It was never properly investigated, so I don't know exactly what kind it was, but it made me
very ill - extraodinarily high temperture, intense nausea, vomiting on everything
For most of my ME nausea and IBS have been my two main symptoms. First I had chronic constipation, then constant diarrea which only stopped when I started taking bio-acidophilus forte (friendly bacteria
tablets). I've suffered nausea so intense I've had to be on a drip to prevent dehydration. It has improved of late but I still suffer when I'm 'done in'; for instance when we went to Centre Parks. I've been talking about it on Foggy friends and several members have complained its their most delibitating symptom
"It is horrible and very debilitating" Beauty
"I don't often suffer with nausea but my daughter (10) does. It's so frustrating because she will miss what little school she does because of it. She eats little and often and has some medication but often nothing seems to help" cookie
"Vomiting is horrible because it is so utterly exhausting" Lizbeth
very ill - extraodinarily high temperture, intense nausea, vomiting on everything
For most of my ME nausea and IBS have been my two main symptoms. First I had chronic constipation, then constant diarrea which only stopped when I started taking bio-acidophilus forte (friendly bacteria
tablets). I've suffered nausea so intense I've had to be on a drip to prevent dehydration. It has improved of late but I still suffer when I'm 'done in'; for instance when we went to Centre Parks. I've been talking about it on Foggy friends and several members have complained its their most delibitating symptom
"It is horrible and very debilitating" Beauty
"I don't often suffer with nausea but my daughter (10) does. It's so frustrating because she will miss what little school she does because of it. She eats little and often and has some medication but often nothing seems to help" cookie
"Vomiting is horrible because it is so utterly exhausting" Lizbeth
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