I came here with the full intention of writing a moving and inspiring blog post about M.E for awareness week. How the research isn't generally looking for a cause of the symptoms. The politics and pharmaceutical and insurance company lobbying demonising millions of real people with a real illness. People who have this real illness that is as debilitating as the illnesses that get all the celebrity endorsements on the awareness campaigns. What do we get? Martine McCutcheon 'curing' her M.E with a fruit juice diet. How we play whack-a-mole with symptoms every day while being labeled scroungers and hypochondriacs. How even social services don't recognise fluctuating care needs for a fluctuating condition which is by its nature not visible when you look at a person who has it. How we've been constantly let down. M.E. CFS, Fibro, CFIDS - all of these diagnoses are deadend dustbins. We are diagnosed with these illnesses, and left to rot.
We're objects of ridicule, "Mental Malingerers", lazy scrounging layabouts - I've been told in comments on this blog that I should stop whining about not getting handouts any more and get a job instead of lazing about in bed all day. I wonder if yet another year, and yet another awareness week will make any difference. Even if Einstein didn't say it; insanity is doing the same thing and expecting a different result. I've watched the calendar turn, blogged for awareness week, and watched the same old same old demonise, marginalise, trivialise from the press.
We can play invisible illness bingo every day; from "but you don't look sick" to "So what's wrong with you, if you don't mind my asking?" From "Oh you just need to get out more." to "Oh my third cousin's neighbour had that, she used magic moon pills from lala land, she's fine now." and "Oh that's not what's really wrong with you, you should get tested for trendyillnesitis, they can cure that." and the killer. "Oh that's all in your head. You can think yourself well if you think positive. Lets do some crystal herb homeopathetic acupressure." I'm trivialising things that have lost me relationships, family and friends through the long sick-years.
You see there's no cure. Imagine that you wake up tomorrow feeling like shit, and you don't get better. Months go by and you get a diagnosis and put on treatment protocols that don't cure you, and in some cases make the illness worse. Meanwhile very few people actually believe you're ill, the popular press and comedians can rip the piss out of you and your illness and you can't complain. No defamation laws prevent them from telling the world that people with a particular illness aren't really ill. There are days when you wake up not remembering your own name through the fog of pain and cognitive dysfunction, and there are the darker days when you wonder if they might be telling the truth; that it's your own head putting you through this hell.
I can't be bothered trying to explain it any more, the ones who matter know it's real, those that don't understand don't matter.
Which are you?
Saturday, 3 May 2014
Sunday, 16 February 2014
Diagnosis, journey and finding information
I was first diagnosed with M.E in 1989. It had been a long haul of GP, specialists, tests, retests and general faff lasting for nearly a year. I was going down with infection after infection, and each one was hit with antibiotics. I know now that these weren't actual infections, although I had all the symptoms, including swelling and white 'infected' patches in my throat. They were the same M.E flare ups I get now, producing the high temperature, sore throat, sinus inflammation and D&V that I still get when I've overdone things to this day. I used to cycle 28 miles a day, walk 5 miles with my Mum's dogs, in '86 I beat the qualifying time for the Olympics swimming front crawl. Back then I was just starting out at the bottom in the civil service, wanting to work my way up and make a name for myself, so I pushed through the illness and worked on. A lowly Administrative assistant has a long way to go in order to get anywhere. Eventually I had to accept that I wasn't going to be able to continue, and 'retired' at 19 years old.
I remember the diagnosis to this day. I broke down and was offered counselling. I refused. I broke down because I had just been told that there was no end to this; that there was no treatment, and although I might improve, I might also get worse. A death sentence would have been kinder at that point. Talking about it would have been exhausting, and would have changed nothing. There was very little information back then. I was put on Prozac which made all of the fatigue/fog symptoms worse, but I was in no fit state to argue. The years before my first pregnancy, and first remission were the lowest point for me. I had no help; my then husband was convinced that it was all in my head. I would roll out of bed and crawl to the loo, often not making it. Housework was impossible. I had no life.
My marriage ended when I fell pregnant. And then the miracle of remission. I never felt as well as I did when in the second and third trimester of pregnancy before or since. After each pregnancy my health began to decline again, although I learned to hide it. I hid it so well that during the end of my second marriage, when I was trying to explain how I would survive without him, he got the impression that I would lie about symptom levels. He never did see how bad it really was for me, and to this day he tells my daughters that I could get up to Dundee to see them if I wanted to, and that I'm not really ill.
This relapse has been the worst and the longest lasting. I was working in a fish processing and packing plant and got a chest infection which I tried to work through as there was no sick pay at that job; two weeks sick and you got the sack, no comeback. Out. I've had several operations for other health issues, including a hysterectomy and gall bladder removal. Each general anaesthetic steps my levels of activity down. Right now I am practically housebound, I have double vision caused by muscle fatigue which makes me unfit to drive in my opinion, it is not permanent, and is variable, so not notifiable. I am unable to tell how bad my vision will be, because I can't tell how bad my fatigue will be at any given time. Better to be safe than sorry.
I have built up a clearer picture of how to manage my own illness through years of research, both in libraries and now online. Some of the information out there is good, some of it is bad, some of it is dangerous and some of it is downright weird. I have learned to look at it critically, seek corroboration and remember that if "it seems too good to be true,it probably is." M.E. is a real illness that produces real symptoms. I am in general as ill as you would be with a viral infection for which you would seek GP advice. Not 'man 'flu' or a cold, but shiver-sweat-vomit-exist till it passes ill. Except that for me it never passes. I am currently wrapped in blankets laid propped up on the sofa with my eyes shaded. I am dictating this to the computer using speech-to-text. I am not well enough to go anywhere, or do anything. Today I can't even lift a mug to take a drink. It is not that I believe that doing more will make me ill. I am unable to do anything because I already feel ill.
I remember the diagnosis to this day. I broke down and was offered counselling. I refused. I broke down because I had just been told that there was no end to this; that there was no treatment, and although I might improve, I might also get worse. A death sentence would have been kinder at that point. Talking about it would have been exhausting, and would have changed nothing. There was very little information back then. I was put on Prozac which made all of the fatigue/fog symptoms worse, but I was in no fit state to argue. The years before my first pregnancy, and first remission were the lowest point for me. I had no help; my then husband was convinced that it was all in my head. I would roll out of bed and crawl to the loo, often not making it. Housework was impossible. I had no life.
My marriage ended when I fell pregnant. And then the miracle of remission. I never felt as well as I did when in the second and third trimester of pregnancy before or since. After each pregnancy my health began to decline again, although I learned to hide it. I hid it so well that during the end of my second marriage, when I was trying to explain how I would survive without him, he got the impression that I would lie about symptom levels. He never did see how bad it really was for me, and to this day he tells my daughters that I could get up to Dundee to see them if I wanted to, and that I'm not really ill.
This relapse has been the worst and the longest lasting. I was working in a fish processing and packing plant and got a chest infection which I tried to work through as there was no sick pay at that job; two weeks sick and you got the sack, no comeback. Out. I've had several operations for other health issues, including a hysterectomy and gall bladder removal. Each general anaesthetic steps my levels of activity down. Right now I am practically housebound, I have double vision caused by muscle fatigue which makes me unfit to drive in my opinion, it is not permanent, and is variable, so not notifiable. I am unable to tell how bad my vision will be, because I can't tell how bad my fatigue will be at any given time. Better to be safe than sorry.
I have built up a clearer picture of how to manage my own illness through years of research, both in libraries and now online. Some of the information out there is good, some of it is bad, some of it is dangerous and some of it is downright weird. I have learned to look at it critically, seek corroboration and remember that if "it seems too good to be true,it probably is." M.E. is a real illness that produces real symptoms. I am in general as ill as you would be with a viral infection for which you would seek GP advice. Not 'man 'flu' or a cold, but shiver-sweat-vomit-exist till it passes ill. Except that for me it never passes. I am currently wrapped in blankets laid propped up on the sofa with my eyes shaded. I am dictating this to the computer using speech-to-text. I am not well enough to go anywhere, or do anything. Today I can't even lift a mug to take a drink. It is not that I believe that doing more will make me ill. I am unable to do anything because I already feel ill.
Thursday, 12 December 2013
It's not the sameness in man that makes for conflict
Making a non-judgemental statement about cultural differences isn't 'racism'. Dishonouring the differences between cultures is. Commenting on gender differences isn't sexist, it opens avenues for debate and can let people understand when they are seeing through the filter of privilege. My respect for another culture, gender, sexual orientation, disability, belief system (etc) does not mean that I understand what it is to be a part of that world. If I can't point out the differences between my world view and yours, based on the differences between you and me, without being accused of having an 'ism', then how can I understand what I need to help you fight (for or against) in your world? And how can you understand my world view if you're afraid to ask me a question for fear of offending me?
We have to accept that we are different from each other. It's OK to be different. Diversity is all about being different. Dare to be different; forget the playground moulds that formed us into little Social Norms and Normas, wearing the uniform of our peers in rebellion against the uniform of authority. Shouting "that's ____ist!" at any mention of the differences between us remoulds us and breaks us back into society's old image. It turns us back into the little sheeple that bleat back the socially acceptable tripe fed to us in 50 million shades of gray.
Come and roll on my wheels for a mile or two; this is my world. The people who are shouting and drowning out debate by gagging it with "that's ____ist!" means that the differences that cause the problems faced by the long term sick and disabled are not just being dishonoured, but downright trashed. We are different; it causes us problems. Trying to pretend that you can stick every disabled person into a one size fits all ticky box just won't work. It can't. We didn't ask to get ill. We didn't request loss of abilities and independance. Most of us can stand up (figuratively) and shout (figuratively) "This difference in me is not a fault. I am not at fault because I am different."
But we get stared at. Pointed out. I get up out of the wheelchair and walk up a single step into a shop so that my carer doesn't strain her back and people look at me as if I'm faking needing the chair. Godsdamnit why don't you just ask the questions outright, to me, I'll answer as long as they are asked with respect. But they are all afraid I'll acuse them of disabled-ism, so the assumptions remain; wheelchair users can never walk unaided at all. If a wheelchair user gets up and walks either [a deity] has popped by, or the person is a fraud. This is dishonouring my differences, both from the able-bodied and from other people with disabilities. It's as insulting as asking my carer if I take sugar over my head, or portraying a pentagram as always only evil, or asking if the skin colour will wash off.
I'll bet this is impacting on your world too. That your differences are being dishonoured because we can't share them. Can't talk about them. Got to shove it all under the carpet and paint ourselves as gray, genderless, sexless, pay-cheque robots. If we don't fit the moulds we can get brushed under the carpet too; just like being back in the playground the sheep turn into wolves when they see a difference. Better to bleat and not be noticed? I don't think so.
The more people I listen to, the more I love my animals. My parrot makes more sense most of the time than 99% of the internet.
We have to accept that we are different from each other. It's OK to be different. Diversity is all about being different. Dare to be different; forget the playground moulds that formed us into little Social Norms and Normas, wearing the uniform of our peers in rebellion against the uniform of authority. Shouting "that's ____ist!" at any mention of the differences between us remoulds us and breaks us back into society's old image. It turns us back into the little sheeple that bleat back the socially acceptable tripe fed to us in 50 million shades of gray.
Come and roll on my wheels for a mile or two; this is my world. The people who are shouting and drowning out debate by gagging it with "that's ____ist!" means that the differences that cause the problems faced by the long term sick and disabled are not just being dishonoured, but downright trashed. We are different; it causes us problems. Trying to pretend that you can stick every disabled person into a one size fits all ticky box just won't work. It can't. We didn't ask to get ill. We didn't request loss of abilities and independance. Most of us can stand up (figuratively) and shout (figuratively) "This difference in me is not a fault. I am not at fault because I am different."
But we get stared at. Pointed out. I get up out of the wheelchair and walk up a single step into a shop so that my carer doesn't strain her back and people look at me as if I'm faking needing the chair. Godsdamnit why don't you just ask the questions outright, to me, I'll answer as long as they are asked with respect. But they are all afraid I'll acuse them of disabled-ism, so the assumptions remain; wheelchair users can never walk unaided at all. If a wheelchair user gets up and walks either [a deity] has popped by, or the person is a fraud. This is dishonouring my differences, both from the able-bodied and from other people with disabilities. It's as insulting as asking my carer if I take sugar over my head, or portraying a pentagram as always only evil, or asking if the skin colour will wash off.
I'll bet this is impacting on your world too. That your differences are being dishonoured because we can't share them. Can't talk about them. Got to shove it all under the carpet and paint ourselves as gray, genderless, sexless, pay-cheque robots. If we don't fit the moulds we can get brushed under the carpet too; just like being back in the playground the sheep turn into wolves when they see a difference. Better to bleat and not be noticed? I don't think so.
The more people I listen to, the more I love my animals. My parrot makes more sense most of the time than 99% of the internet.
Tuesday, 6 December 2011
putting this here for Bendygirl
Hansard transcript from today gives this:
John McDonnell:Many of my constituents would have welcomed the increase but they cannot because they are no longer receiving their benefit, particularly as a result of the Atos assessments of disability living allowance. In addition to that, having lost, or not gained, their benefit, they are waiting long periods for their appeals. Will the Minister look at the length of time that people are waiting for their appeals and the number of appeals that have been postponed as a result of lack of staff?
Steve Webb: The hon. Gentleman is bringing together several different issues. It is entirely the case that at the time of the election the previous Government had given Atos a contract for the work capability assessment for ESA—not DLA—and we have gone through with the Harrington process, independent reviews and recommendations for change, all implemented by the Government. Good progress is being made on making the system fit for purpose, but getting the decision right first time is better than speeding up the appeals process, and we are doing that more and more because we are reforming the system.
John McDonnell:Many of my constituents would have welcomed the increase but they cannot because they are no longer receiving their benefit, particularly as a result of the Atos assessments of disability living allowance. In addition to that, having lost, or not gained, their benefit, they are waiting long periods for their appeals. Will the Minister look at the length of time that people are waiting for their appeals and the number of appeals that have been postponed as a result of lack of staff?
Steve Webb: The hon. Gentleman is bringing together several different issues. It is entirely the case that at the time of the election the previous Government had given Atos a contract for the work capability assessment for ESA—not DLA—and we have gone through with the Harrington process, independent reviews and recommendations for change, all implemented by the Government. Good progress is being made on making the system fit for purpose, but getting the decision right first time is better than speeding up the appeals process, and we are doing that more and more because we are reforming the system.
Monday, 19 September 2011
Painkiller failiure fueled phone browser research
From: http://passingnightmare.co.uk/2011/01/epidemic-of-benefit-fraud-and-the-demonization-of-welfare/
The Attorney General’s Annual Fraud Indicator report of January 2010 states that £30bn of fraudulent activity takes place each year in the UK, with benefit fraud accounting for just £1.1bn. Meanwhile tax fraud, which receives negligible coverage in the mainstream press, accounts for £15.2bn, just over half of the UK’s total fraud bill.
“All fraud is wrong and should be tackled, but benefit fraud accounts for less than 1 per cent of benefit spending and is dwarfed by the amount lost to tax evasion. If the government is serious about raising revenue it should put more resources into tackling tax evasion rather than using benefit fraud as a cover for swingeing cuts to genuine claimants.“
TUC Spokesman – Referenced on TaxResearch.org.uk
Looking again at these large amounts lost to tax related fraud and bearing in mind the £850bn banking bail out following the financial crisis of 2008, you can see why attempting to suggest that jobs can be saved and that the deficit can be substantially reduced by stepping up a crackdown on benefit claimants is pure fallacy. There’s also some excellent research from the Citizens Advice Bureau, demonstrating that as much as £16bn in benefits goes unclaimed by those legally entitled to it.
The Attorney General’s Annual Fraud Indicator report of January 2010 states that £30bn of fraudulent activity takes place each year in the UK, with benefit fraud accounting for just £1.1bn. Meanwhile tax fraud, which receives negligible coverage in the mainstream press, accounts for £15.2bn, just over half of the UK’s total fraud bill.
“All fraud is wrong and should be tackled, but benefit fraud accounts for less than 1 per cent of benefit spending and is dwarfed by the amount lost to tax evasion. If the government is serious about raising revenue it should put more resources into tackling tax evasion rather than using benefit fraud as a cover for swingeing cuts to genuine claimants.“
TUC Spokesman – Referenced on TaxResearch.org.uk
Looking again at these large amounts lost to tax related fraud and bearing in mind the £850bn banking bail out following the financial crisis of 2008, you can see why attempting to suggest that jobs can be saved and that the deficit can be substantially reduced by stepping up a crackdown on benefit claimants is pure fallacy. There’s also some excellent research from the Citizens Advice Bureau, demonstrating that as much as £16bn in benefits goes unclaimed by those legally entitled to it.
Saturday, 17 September 2011
This isn't me, it's M.E.
Firstly this post has taken me over a month to write. I've come back to the start and edited this little fact in because I already have comments on this blog which read 'if you're fit enough to winge in a blog about getting money you're not entitled to while lounging around in bed, then you're fit enough to work.' I'm pretty fed up with them because it shows that you have not read this blog and you're just buying into the media-spun lies that all disabled people are fit to work, living in luxury and draining the economy dry. Don't bother posting any variations on that theme because this is all the response you'll get.
The symptoms of CFIDS*/M.E. are many and varied. They also vary day to day, week to week, month to month and year to year. This is not a convienient excuse; it is medical fact.
None of the below is exaggerated at all.
Fatigue.
I don't get a bit tired. I don't even get as comfortably tired as you'd get playing football on a Saturday afternoon, or going to the gymn. I get as tired as a crack troop trainee after 4 days of basic training; think of the girl in GI Jane, so mind numbingly exhausted that she can't function. So exhausted that I'm past the point of sleep and almost passing out. Unable to speak, think, move, or even know who I am or what day of the week it is. How much effort it takes to put me in that state varies from day to day, week to week, month to month and year to year. It is always totally disproportionate to the effort I've put out and it always takes at least 2 days to pass, unless I've pushed past the point of break and put myself in active 'viral' mode.
Unrefreshing sleep.
I don't feel better when I wake up, no matter how long I sleep. Most of my symptoms are at their absolute worst as I wake up. I always wake up feeling as if I have a severe dose of the 'flu (including a registering high temperature on my worse days) plus a five fire alarm hangover.
Pain.
I am always in pain. I get joint pain, muscle pain and crippling headaches. I can't sit with my feet on the floor, upright in a chair or a car seat or my wheelchair for more than an hour without severe pain. It begins to be sore as soon as I sit in that position and gets gradually worse over time. After an hour I am desperate to sit in a supported lean with my feet and legs at the same level as my bum. My feet and legs start to turn blue if I sit with them down for too long; a physical symptom.
Any repetative motion; lifting food to my mouth, typing, using a computer mouse, trying to cook, washing myself, using a cloth, causes more pain. Generally the locus of that pain is under my left shoulder blade, towards the middle of my back. It feels as if someone is stabbing me slowly with a red hot knife.
I've always got the sensation that ants are crawling under my skin. Sometimes it's so unbearable I can't wear clothes. I can never take a shower; the sensation of water hitting my skin feels like being beaten with nettles. I can't bear to be touched, even the lightest pressure feels like being stabbed. I've learned to hide the pain reaction most of the time and on my better days when I can wear clothes it isn't so bad.
I take painkillers to ease this, but they don't take all of the pain away. The best I can get to is about 3 - 4 out of 10 on the pain scale and at that level I'm pretty much knocked out by the painkillers.
Muscle fatigue.
Everything requires more effort than it should. I feel as if my limbs are lead weighted and there are elephants on my back. The slightest exertion has me sweating and my heart racing as if I'd run a mile. If I do anything at all my muscles will very quickly stop working. I can loose grip on things, stumble and fall. The muscles in my eyes are currently affected by this and I get double vision when fatigued. This has been confirmed by a hospital specialist using machines that measure double vision that can't be faked; it is a physical symptom. My hands swell and cramp, muscles all over my body cramp and twitch constantly. I joke that I feel like Arthur Dent did after his first hyperspace leap 'like a military academy; bits of me keep passing out'.
Brain fog.
I am as unable to focus as someone who is drunk or stoned. It feels like trying to think through treacle soaked cotton wool. My short term memory is shot to hell.
Nausea and Dizziness.
I feel as if I'm on a rollercoaster on a ship in a storm. I take medication to help with this, but those medications cause drowsiness so I try to limit how much I use them. I am woken by this (including having to throw up) constantly.
Speech difficulties.
I use the wrong words in sentences; it makes perfect sense to me when I'm saying it. I've said totally non-sensical things that made perfect sense, like 'can you get the lawn mower lower so I can get out of the bath?' Of course I wanted the grab rail down. It's as embarrassing as hell, especially when people start laughing and I don't know why, totally confusing. Phone conversations are a nightmare. I can't see the other person so I don't know if I'm making sense. I have to focus very hard indeed on every word, which is totally exhausting.
Sensitivity to light and noise.
There are days when the slightest noise makes my head explode with pain. A little light makes my eyes stream untill the skin next to them splits and weeps with the salt.
Active 'viral' mode.
Every couple of weeks, more often if I'm doing too much, I'll get what appears to be a viral infection. I get a sore throat, high temperature (103-104 deg F), fever including a cycle of shivering (so badly I really scare one of my unofficial carers when ever she sees it. Someone with malaria may be as bad) and fever spike sweating. I am totally unable to do anything except lie in bed, throw up, shiver and sweat. It takes about a week to get back to my normal levels of activity, longer if I have to push myself to do anything in this state.
What this all means.
I can't drive. I can't go anywhere by myself (I can't get about even in my wheelchair solo.) I can't cook for myself, not even reheating myself a meal in the microwave or make a hot drink safely. I can't bathe myself, dress myself properly, clean my house or do my laundry. I can't manage my own money, deal with paperwork (I can't hold a pen to write) or even reliably sit in front of a computer to produce a piece of writing in a short time. I can't sit to watch TV; it doesn't focus me out of the dizziness and nausea enough to concentrate.
How do I cope living alone? ("she's lying; it's not that bad." comments ahoy...)
I have a dedicated network of friends and neighbours. It's not perfect, but it works up to a point. Two of my friends (a married couple) take turns to sleep over in my spare room when I'm at my worst and are always at the end of a phone. I have food I can eat cold straight from the fridge or cupboard (tuna light lunches we salute you). I can even make myself a hot drink using water from the hot tap at a real pinch if no one has been in to fill my flask with hot (but below scalding temperature) water or I can't manage the twist top or lift the flask. If I can't get dressed or undressed I sleep in my clothes until I have help again. I 'wash' using baby wipes.
There are services I can't access. It's useless getting a taxi to go anywhere unless there is someone to meet me at the other end because I can't push myself in the wheelchair. I can't get to a bus stop from home. So the doctor's surgery, dentist, citizens advice, post office, hydrotherapy pool are all off limits unless I have one of the 'network' free to help me. One of them works away all week and the other works shifts. They do all they can to help in their spare time and at weekends. They don't have time to sit down and fill in forms for me on top of everything else they already do unpaid, nor can I justify asking them to swap days off or take unpaid leave to run me about to appointments.
I'm not fit to work, even part time from home. I couldn't set up an ebay business or write for a living. I'm simply too ill.
I was once fit and healthy. I used to cycle 25 miles every day to and from a physically demanding job. At 17 years old I could beat the olympic qualifying time for swimming front crawl. I used to walk for miles with my dogs every day. I have written a book, although it was not good enough to be published. I have had long periods of remission from M.E. when I declared myself fit for work and came off benefits. I have worked as a sales person, kitchen designer, and even on a factory production line to put food on my (grown up and left home) family's table and presents under the Christmas tree rather than claim benefits when I was made redundant.
If you feel motivated to post any comment about malingering, or a fake illness that's all in my mind, know now that this could happen to you. Tomorrow you may be just as ill as I am and need a state support system that simply does not exist because you didn't help fight to keep it. The illness may be mental or physical and actually it doesn't matter either way. The symptoms of a mental illness are just as 'real' as a physical one, and just as stubborn to treat. Especially when the cause is still unknown because biomedical research is being underfunded and pyschological research is all that's being done. If you only look at a problem from one angle you can never find the whole story for solving it.
I hope and pray with all my heart that you never have to walk a mile in my shoes, however nastily you choose to comment on my life.
*chronic fatigue immune dysfunction syndrome
The symptoms of CFIDS*/M.E. are many and varied. They also vary day to day, week to week, month to month and year to year. This is not a convienient excuse; it is medical fact.
None of the below is exaggerated at all.
Fatigue.
I don't get a bit tired. I don't even get as comfortably tired as you'd get playing football on a Saturday afternoon, or going to the gymn. I get as tired as a crack troop trainee after 4 days of basic training; think of the girl in GI Jane, so mind numbingly exhausted that she can't function. So exhausted that I'm past the point of sleep and almost passing out. Unable to speak, think, move, or even know who I am or what day of the week it is. How much effort it takes to put me in that state varies from day to day, week to week, month to month and year to year. It is always totally disproportionate to the effort I've put out and it always takes at least 2 days to pass, unless I've pushed past the point of break and put myself in active 'viral' mode.
Unrefreshing sleep.
I don't feel better when I wake up, no matter how long I sleep. Most of my symptoms are at their absolute worst as I wake up. I always wake up feeling as if I have a severe dose of the 'flu (including a registering high temperature on my worse days) plus a five fire alarm hangover.
Pain.
I am always in pain. I get joint pain, muscle pain and crippling headaches. I can't sit with my feet on the floor, upright in a chair or a car seat or my wheelchair for more than an hour without severe pain. It begins to be sore as soon as I sit in that position and gets gradually worse over time. After an hour I am desperate to sit in a supported lean with my feet and legs at the same level as my bum. My feet and legs start to turn blue if I sit with them down for too long; a physical symptom.
Any repetative motion; lifting food to my mouth, typing, using a computer mouse, trying to cook, washing myself, using a cloth, causes more pain. Generally the locus of that pain is under my left shoulder blade, towards the middle of my back. It feels as if someone is stabbing me slowly with a red hot knife.
I've always got the sensation that ants are crawling under my skin. Sometimes it's so unbearable I can't wear clothes. I can never take a shower; the sensation of water hitting my skin feels like being beaten with nettles. I can't bear to be touched, even the lightest pressure feels like being stabbed. I've learned to hide the pain reaction most of the time and on my better days when I can wear clothes it isn't so bad.
I take painkillers to ease this, but they don't take all of the pain away. The best I can get to is about 3 - 4 out of 10 on the pain scale and at that level I'm pretty much knocked out by the painkillers.
Muscle fatigue.
Everything requires more effort than it should. I feel as if my limbs are lead weighted and there are elephants on my back. The slightest exertion has me sweating and my heart racing as if I'd run a mile. If I do anything at all my muscles will very quickly stop working. I can loose grip on things, stumble and fall. The muscles in my eyes are currently affected by this and I get double vision when fatigued. This has been confirmed by a hospital specialist using machines that measure double vision that can't be faked; it is a physical symptom. My hands swell and cramp, muscles all over my body cramp and twitch constantly. I joke that I feel like Arthur Dent did after his first hyperspace leap 'like a military academy; bits of me keep passing out'.
Brain fog.
I am as unable to focus as someone who is drunk or stoned. It feels like trying to think through treacle soaked cotton wool. My short term memory is shot to hell.
Nausea and Dizziness.
I feel as if I'm on a rollercoaster on a ship in a storm. I take medication to help with this, but those medications cause drowsiness so I try to limit how much I use them. I am woken by this (including having to throw up) constantly.
Speech difficulties.
I use the wrong words in sentences; it makes perfect sense to me when I'm saying it. I've said totally non-sensical things that made perfect sense, like 'can you get the lawn mower lower so I can get out of the bath?' Of course I wanted the grab rail down. It's as embarrassing as hell, especially when people start laughing and I don't know why, totally confusing. Phone conversations are a nightmare. I can't see the other person so I don't know if I'm making sense. I have to focus very hard indeed on every word, which is totally exhausting.
Sensitivity to light and noise.
There are days when the slightest noise makes my head explode with pain. A little light makes my eyes stream untill the skin next to them splits and weeps with the salt.
Active 'viral' mode.
Every couple of weeks, more often if I'm doing too much, I'll get what appears to be a viral infection. I get a sore throat, high temperature (103-104 deg F), fever including a cycle of shivering (so badly I really scare one of my unofficial carers when ever she sees it. Someone with malaria may be as bad) and fever spike sweating. I am totally unable to do anything except lie in bed, throw up, shiver and sweat. It takes about a week to get back to my normal levels of activity, longer if I have to push myself to do anything in this state.
What this all means.
I can't drive. I can't go anywhere by myself (I can't get about even in my wheelchair solo.) I can't cook for myself, not even reheating myself a meal in the microwave or make a hot drink safely. I can't bathe myself, dress myself properly, clean my house or do my laundry. I can't manage my own money, deal with paperwork (I can't hold a pen to write) or even reliably sit in front of a computer to produce a piece of writing in a short time. I can't sit to watch TV; it doesn't focus me out of the dizziness and nausea enough to concentrate.
How do I cope living alone? ("she's lying; it's not that bad." comments ahoy...)
I have a dedicated network of friends and neighbours. It's not perfect, but it works up to a point. Two of my friends (a married couple) take turns to sleep over in my spare room when I'm at my worst and are always at the end of a phone. I have food I can eat cold straight from the fridge or cupboard (tuna light lunches we salute you). I can even make myself a hot drink using water from the hot tap at a real pinch if no one has been in to fill my flask with hot (but below scalding temperature) water or I can't manage the twist top or lift the flask. If I can't get dressed or undressed I sleep in my clothes until I have help again. I 'wash' using baby wipes.
There are services I can't access. It's useless getting a taxi to go anywhere unless there is someone to meet me at the other end because I can't push myself in the wheelchair. I can't get to a bus stop from home. So the doctor's surgery, dentist, citizens advice, post office, hydrotherapy pool are all off limits unless I have one of the 'network' free to help me. One of them works away all week and the other works shifts. They do all they can to help in their spare time and at weekends. They don't have time to sit down and fill in forms for me on top of everything else they already do unpaid, nor can I justify asking them to swap days off or take unpaid leave to run me about to appointments.
I'm not fit to work, even part time from home. I couldn't set up an ebay business or write for a living. I'm simply too ill.
I was once fit and healthy. I used to cycle 25 miles every day to and from a physically demanding job. At 17 years old I could beat the olympic qualifying time for swimming front crawl. I used to walk for miles with my dogs every day. I have written a book, although it was not good enough to be published. I have had long periods of remission from M.E. when I declared myself fit for work and came off benefits. I have worked as a sales person, kitchen designer, and even on a factory production line to put food on my (grown up and left home) family's table and presents under the Christmas tree rather than claim benefits when I was made redundant.
If you feel motivated to post any comment about malingering, or a fake illness that's all in my mind, know now that this could happen to you. Tomorrow you may be just as ill as I am and need a state support system that simply does not exist because you didn't help fight to keep it. The illness may be mental or physical and actually it doesn't matter either way. The symptoms of a mental illness are just as 'real' as a physical one, and just as stubborn to treat. Especially when the cause is still unknown because biomedical research is being underfunded and pyschological research is all that's being done. If you only look at a problem from one angle you can never find the whole story for solving it.
I hope and pray with all my heart that you never have to walk a mile in my shoes, however nastily you choose to comment on my life.
*chronic fatigue immune dysfunction syndrome
Thursday, 26 May 2011
Dr Montoya on CFIDS/CFS/M.E.
If you do nothing else today please watch this video. If you're fogged be aware it's long (over an hour); you may need to split it into bite-sized chunks.
"... the fact that behavioural intervention means the patient gets better by no means means that this condition is psychological in nature" Quoting from the PACE study published in Feb 2011.
" I had a very sad conversation with a family member of a patient who was doubting that [my] patient had the disease and she cited this study to say that now there was proof that CFS was psychological and that with psychological intervention the patients could get cured. This is far from true from the actual findings of this study."
I wish the people in charge of health care and benefits would watch this, but even if they did they would discount it because to understand and accept this would cost money.
Highlights include acknowledging that this disease (or something very like it) has been recognised by the medical profession since the 1800s. My personal favourite quote is where he says that he has a dream that one day the medical profession as a whole will apologise to those with CFIDS/M.E for not believing them and not validating the illness.
"... the fact that behavioural intervention means the patient gets better by no means means that this condition is psychological in nature" Quoting from the PACE study published in Feb 2011.
" I had a very sad conversation with a family member of a patient who was doubting that [my] patient had the disease and she cited this study to say that now there was proof that CFS was psychological and that with psychological intervention the patients could get cured. This is far from true from the actual findings of this study."
I wish the people in charge of health care and benefits would watch this, but even if they did they would discount it because to understand and accept this would cost money.
Highlights include acknowledging that this disease (or something very like it) has been recognised by the medical profession since the 1800s. My personal favourite quote is where he says that he has a dream that one day the medical profession as a whole will apologise to those with CFIDS/M.E for not believing them and not validating the illness.
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