Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome
Today is ME Awareness Day and this post is available for anyone to see - apologies to those who know me well and know most of this.
I've been thinking about this quite a lot. I appreciate that most people do need to be aware of the effects of ME, it's not something "in your mind", it's not "malingering", it isn't that you don't get better "because you're not trying hard enough", it isn't a case of "well if you exercised it would all go away" or "if you only ate organic" or "if you followed this really strange totally unrelated therapy that worked for my best friends friend of a friend's cousin who knew someone who..."
Sadly I am all too aware of the pain in my joints and muscles, the exhaustion, sleping 16+ hours a day (or conversely sleeping only intermittently), the lack of concentration, the inability to walk more than a few yards without being in a lot of pain, the agony of standing, the embarrasment of falling over becuase your legs just won't support you anymore, being unable to safely prepare a meal for myself, watching myself continue to pour a drink when the glass is full but being unable to stop. There are many many more difficulties that I have to live with on a daily basis from only wearing sandals all year round as it just takes too much energy and effort to put proper shoes on (and my feet swell without warning too) to being unable to use a hoover as it just causes too much pain. I really hate it when my brain stops processing information and it feels like a tv programme or a conversation is in a foreign language - so if I reply inappropriatly that is why it happens.
I was sacked from my job because of it, I was no longer able to concentrate and have conversations with customers, let alone cope with being sat upright for a full shift.
It has affected my relationship with my children who were in their teens when I developed it, it contributed to my marriage break up, I have lost many friends - however hard I try to explain that it isn't that I don't want to go out, it's that sometimes I physically and mentally can't, they don't always understand.
Life is not always unrelentingly grim, I have made many new friends through the internet (and without the lifeline of the pc I would be very isolated), existing friends have rallied round. People are incredibly supportive to me, pushing my wheelchair, letting me stay with them to recover, providing emotional support as well as practical. There are also bad days and better days - I can never forget that I have ME, but I can cope with it much better on some days. I do have to be aware that if I have done more than I should, then I will have payback time when I am only able to do very little other than sleep.
I am very lucky that I live in the UK where (at the moment) there is still reasonable health care available and that I am not a financial burdon on friends and family. Sadly the proposed benefit cuts may change this.
At first glance I do not look disabled, you cannot see the pain and the exhaustion, apart from on a very bad day I do not look like I am entitled to park in disabled spaces. When I get the wheelchair out of the car I often get strange looks, especially if I'm with my 86 year old mother and I get in the wheelchair and she walks!
I apologise if this all seems very negative, I try to be positive and concentrate on what I can do and how lucky I am that I only have a long term illness that incapacitates me rather than one which would kill me.
eta - this is of course purely my take on how ME affects me - it affects different people in different ways and also with differing severity. There are people who are bedridden and others who manage to work while living with the illness.
I've been thinking about this quite a lot. I appreciate that most people do need to be aware of the effects of ME, it's not something "in your mind", it's not "malingering", it isn't that you don't get better "because you're not trying hard enough", it isn't a case of "well if you exercised it would all go away" or "if you only ate organic" or "if you followed this really strange totally unrelated therapy that worked for my best friends friend of a friend's cousin who knew someone who..."
Sadly I am all too aware of the pain in my joints and muscles, the exhaustion, sleping 16+ hours a day (or conversely sleeping only intermittently), the lack of concentration, the inability to walk more than a few yards without being in a lot of pain, the agony of standing, the embarrasment of falling over becuase your legs just won't support you anymore, being unable to safely prepare a meal for myself, watching myself continue to pour a drink when the glass is full but being unable to stop. There are many many more difficulties that I have to live with on a daily basis from only wearing sandals all year round as it just takes too much energy and effort to put proper shoes on (and my feet swell without warning too) to being unable to use a hoover as it just causes too much pain. I really hate it when my brain stops processing information and it feels like a tv programme or a conversation is in a foreign language - so if I reply inappropriatly that is why it happens.
I was sacked from my job because of it, I was no longer able to concentrate and have conversations with customers, let alone cope with being sat upright for a full shift.
It has affected my relationship with my children who were in their teens when I developed it, it contributed to my marriage break up, I have lost many friends - however hard I try to explain that it isn't that I don't want to go out, it's that sometimes I physically and mentally can't, they don't always understand.
Life is not always unrelentingly grim, I have made many new friends through the internet (and without the lifeline of the pc I would be very isolated), existing friends have rallied round. People are incredibly supportive to me, pushing my wheelchair, letting me stay with them to recover, providing emotional support as well as practical. There are also bad days and better days - I can never forget that I have ME, but I can cope with it much better on some days. I do have to be aware that if I have done more than I should, then I will have payback time when I am only able to do very little other than sleep.
I am very lucky that I live in the UK where (at the moment) there is still reasonable health care available and that I am not a financial burdon on friends and family. Sadly the proposed benefit cuts may change this.
At first glance I do not look disabled, you cannot see the pain and the exhaustion, apart from on a very bad day I do not look like I am entitled to park in disabled spaces. When I get the wheelchair out of the car I often get strange looks, especially if I'm with my 86 year old mother and I get in the wheelchair and she walks!
I apologise if this all seems very negative, I try to be positive and concentrate on what I can do and how lucky I am that I only have a long term illness that incapacitates me rather than one which would kill me.
eta - this is of course purely my take on how ME affects me - it affects different people in different ways and also with differing severity. There are people who are bedridden and others who manage to work while living with the illness.