Last night I didn't sleep until around 1am, that's usual for me due to anxiety or pain. Night time is a bad time for me as twice in my life I have nearly died in my bed and have only been saved because my amazing parents acted quickly. I have post traumatic stress from the last time it happened (June 2012 when I nearly bled to death in the middle of the countryside) and also a previous incident which I would rather not get into right now. My sleep was filled with night terrors (vivid nightmares) about running away from something scary or trying to shout for help and the words not coming out. I woke a few times and struggled to get back to sleep before I finally got up in the morning . When I get up every day I always ache pretty bad especially my head face and neck and I generally feel even worse than when I went to bed as my sleep is unrefreshing sleep and my muscles hold a lot of tension whereas 'normal' peoples relax. It's a struggle getting up most days due to this and the overwhelming exhaustion but somehow I manage to find the strength inside me. At the age of sixteen I was diagnosed with M.E (or chronic fatigue syndrome as it is also called). Before I progress to talk to you further I would like to request that you do not bombard me with 'miracle cures' or 'diets' because you name it and most likely I will have tried it...and spent a small fortune on it too! Sadly, there is no such thing and it appears to be more about management. Its easy to get caught up and unhealthily obsessed by these things because you are desperate for some relief, it happened to me regarding diet and that's why I must insist you don't comment about food groups as I have a strong intolerance to spices and both fruit and vegetables and therefore I have to exist on mainly bland carbs and protein. This concerns me but I am slowly accepting that I have no choice. Anyway, back to M.E. It's such a strange illness to have because it has always had pretty negative press and in the 80's it was nicknamed 'yuppie flu' .Back then people basically thought it was an illness fabricated by people who wanted to sit around doing nothing all day and many people still hold this belief today. People often say 'oh that's the condition that causes tiredness isn't it?'. Tiredness does nothing to describe the physical, emotional and mental exhaustion that is caused by this illness, not to mention the pain. I find it very hard to remember what it feels like to feel 'tired' in the way a healthy person feels it. M.E exhaustion feels like you have not slept all night, worked out at the gym for three hours, gone to work all day and then gone out clubbing til 3am all whilst battling the flu. It causes so many different symptoms such a sore throat, headaches, digestion problems, dizziness, migraines, allergies, food intolerances, difficulty concentrating, depression, hormone and vitamin imbalances, heat and blood sugar regulating difficulties, unrefreshing sleep, muscle pain and weakness..the list literally goes on and on. Despite being recognised by The World Health Organisation as a genuine neurological disease having M.E is a constant battle not just to deal with the symptoms but also to prove to people that your illness is real and not 'in your head'. It is believed my illness started because of a combination of things. I had a meningitis vaccine which gave me lots of bizarre symptoms and at the same time the bullying got pretty bad and my best friend fell out with me giving me no explanation for her behaviour. Every day I lived under severe emotional stress and in total fear of going to school and this affected my immune system pretty bad and changed my body into a permanent state of fight or flight as adrenaline flooded my body constantly. This state of hyperarousal is a physiological response triggered by a perceived attack, muscles tense, hormones get released, blood pressure increases and the organs especially the heart work harder to keep your body primed for a battle . The body is not designed to constantly live like this and doing so can have a negative effect on your whole system. I was on permanent alert and my immune system could not cope with the stress resulting in me catching every illness going and taking longer and longer to recover. I passed all my GCSE's with a grade C or above which very much surprised me as I had skipped so many lessons due to the bullying. The M.E crept up slowly, getting worse and worse over time yet despite this I stayed on for a levels (at this point having no idea what was wrong with me and just assuming it was stress). Even though I had loads of time off ill I passed my a levels (I even got an A in one) and stayed on an extra year to do an AS level in English Literature. I never properly thanked the teachers who were so helpful and understanding but without them I wouldn't have succeeded in my studies. However, nobody would have had a clue how I felt inside because I was the most extroverted hyperactive loud mouth ever in the sixth form. I guess my over exuberance was because suddenly I felt free of the constraints that had held me in fear for the past two years. Looking back it was silly really because it gave people totally the wrong impression of me, I was perceived to be an over confident energetic person when in truth I was the opposite. I don't usually like to focus on or talk about my M.E much but now I have decided to open up and through these blog entries I am going to tell you bits of my life story and what it is like to live with a variety of health conditions including M.E.
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Thursday 29 May 2014
The Real M.E: Part 1
When you look at my picture, you hear my name or you see me walk past you on the street I am wearing my mask. It's usually a colourful mask; kohl rimmed eyes, wavy scarlet hair, bright jewellery and berry tinted lips often curved into a smile. I wear it well really, it's a perfect disguise, a cloak of protection or a camouflage I can adapt quite readily. I love clothes and creating my own style, I always have but unfortunately this can lead people to misjudge me. At school I was bullied from the age of seven through to sixteen, I remember every detail and I have no doubt in my mind that it shaped me into the person I am today, both the good bits and the bad bits (everyone has negative aspects of their personalities). I am going to share some of this with you later but for now I am going to describe how I feel today, sitting here, writing this from my Parent's brown leather sofa.
Last night I didn't sleep until around 1am, that's usual for me due to anxiety or pain. Night time is a bad time for me as twice in my life I have nearly died in my bed and have only been saved because my amazing parents acted quickly. I have post traumatic stress from the last time it happened (June 2012 when I nearly bled to death in the middle of the countryside) and also a previous incident which I would rather not get into right now. My sleep was filled with night terrors (vivid nightmares) about running away from something scary or trying to shout for help and the words not coming out. I woke a few times and struggled to get back to sleep before I finally got up in the morning . When I get up every day I always ache pretty bad especially my head face and neck and I generally feel even worse than when I went to bed as my sleep is unrefreshing sleep and my muscles hold a lot of tension whereas 'normal' peoples relax. It's a struggle getting up most days due to this and the overwhelming exhaustion but somehow I manage to find the strength inside me. At the age of sixteen I was diagnosed with M.E (or chronic fatigue syndrome as it is also called). Before I progress to talk to you further I would like to request that you do not bombard me with 'miracle cures' or 'diets' because you name it and most likely I will have tried it...and spent a small fortune on it too! Sadly, there is no such thing and it appears to be more about management. Its easy to get caught up and unhealthily obsessed by these things because you are desperate for some relief, it happened to me regarding diet and that's why I must insist you don't comment about food groups as I have a strong intolerance to spices and both fruit and vegetables and therefore I have to exist on mainly bland carbs and protein. This concerns me but I am slowly accepting that I have no choice. Anyway, back to M.E. It's such a strange illness to have because it has always had pretty negative press and in the 80's it was nicknamed 'yuppie flu' .Back then people basically thought it was an illness fabricated by people who wanted to sit around doing nothing all day and many people still hold this belief today. People often say 'oh that's the condition that causes tiredness isn't it?'. Tiredness does nothing to describe the physical, emotional and mental exhaustion that is caused by this illness, not to mention the pain. I find it very hard to remember what it feels like to feel 'tired' in the way a healthy person feels it. M.E exhaustion feels like you have not slept all night, worked out at the gym for three hours, gone to work all day and then gone out clubbing til 3am all whilst battling the flu. It causes so many different symptoms such a sore throat, headaches, digestion problems, dizziness, migraines, allergies, food intolerances, difficulty concentrating, depression, hormone and vitamin imbalances, heat and blood sugar regulating difficulties, unrefreshing sleep, muscle pain and weakness..the list literally goes on and on. Despite being recognised by The World Health Organisation as a genuine neurological disease having M.E is a constant battle not just to deal with the symptoms but also to prove to people that your illness is real and not 'in your head'. It is believed my illness started because of a combination of things. I had a meningitis vaccine which gave me lots of bizarre symptoms and at the same time the bullying got pretty bad and my best friend fell out with me giving me no explanation for her behaviour. Every day I lived under severe emotional stress and in total fear of going to school and this affected my immune system pretty bad and changed my body into a permanent state of fight or flight as adrenaline flooded my body constantly. This state of hyperarousal is a physiological response triggered by a perceived attack, muscles tense, hormones get released, blood pressure increases and the organs especially the heart work harder to keep your body primed for a battle . The body is not designed to constantly live like this and doing so can have a negative effect on your whole system. I was on permanent alert and my immune system could not cope with the stress resulting in me catching every illness going and taking longer and longer to recover. I passed all my GCSE's with a grade C or above which very much surprised me as I had skipped so many lessons due to the bullying. The M.E crept up slowly, getting worse and worse over time yet despite this I stayed on for a levels (at this point having no idea what was wrong with me and just assuming it was stress). Even though I had loads of time off ill I passed my a levels (I even got an A in one) and stayed on an extra year to do an AS level in English Literature. I never properly thanked the teachers who were so helpful and understanding but without them I wouldn't have succeeded in my studies. However, nobody would have had a clue how I felt inside because I was the most extroverted hyperactive loud mouth ever in the sixth form. I guess my over exuberance was because suddenly I felt free of the constraints that had held me in fear for the past two years. Looking back it was silly really because it gave people totally the wrong impression of me, I was perceived to be an over confident energetic person when in truth I was the opposite. I don't usually like to focus on or talk about my M.E much but now I have decided to open up and through these blog entries I am going to tell you bits of my life story and what it is like to live with a variety of health conditions including M.E.
Last night I didn't sleep until around 1am, that's usual for me due to anxiety or pain. Night time is a bad time for me as twice in my life I have nearly died in my bed and have only been saved because my amazing parents acted quickly. I have post traumatic stress from the last time it happened (June 2012 when I nearly bled to death in the middle of the countryside) and also a previous incident which I would rather not get into right now. My sleep was filled with night terrors (vivid nightmares) about running away from something scary or trying to shout for help and the words not coming out. I woke a few times and struggled to get back to sleep before I finally got up in the morning . When I get up every day I always ache pretty bad especially my head face and neck and I generally feel even worse than when I went to bed as my sleep is unrefreshing sleep and my muscles hold a lot of tension whereas 'normal' peoples relax. It's a struggle getting up most days due to this and the overwhelming exhaustion but somehow I manage to find the strength inside me. At the age of sixteen I was diagnosed with M.E (or chronic fatigue syndrome as it is also called). Before I progress to talk to you further I would like to request that you do not bombard me with 'miracle cures' or 'diets' because you name it and most likely I will have tried it...and spent a small fortune on it too! Sadly, there is no such thing and it appears to be more about management. Its easy to get caught up and unhealthily obsessed by these things because you are desperate for some relief, it happened to me regarding diet and that's why I must insist you don't comment about food groups as I have a strong intolerance to spices and both fruit and vegetables and therefore I have to exist on mainly bland carbs and protein. This concerns me but I am slowly accepting that I have no choice. Anyway, back to M.E. It's such a strange illness to have because it has always had pretty negative press and in the 80's it was nicknamed 'yuppie flu' .Back then people basically thought it was an illness fabricated by people who wanted to sit around doing nothing all day and many people still hold this belief today. People often say 'oh that's the condition that causes tiredness isn't it?'. Tiredness does nothing to describe the physical, emotional and mental exhaustion that is caused by this illness, not to mention the pain. I find it very hard to remember what it feels like to feel 'tired' in the way a healthy person feels it. M.E exhaustion feels like you have not slept all night, worked out at the gym for three hours, gone to work all day and then gone out clubbing til 3am all whilst battling the flu. It causes so many different symptoms such a sore throat, headaches, digestion problems, dizziness, migraines, allergies, food intolerances, difficulty concentrating, depression, hormone and vitamin imbalances, heat and blood sugar regulating difficulties, unrefreshing sleep, muscle pain and weakness..the list literally goes on and on. Despite being recognised by The World Health Organisation as a genuine neurological disease having M.E is a constant battle not just to deal with the symptoms but also to prove to people that your illness is real and not 'in your head'. It is believed my illness started because of a combination of things. I had a meningitis vaccine which gave me lots of bizarre symptoms and at the same time the bullying got pretty bad and my best friend fell out with me giving me no explanation for her behaviour. Every day I lived under severe emotional stress and in total fear of going to school and this affected my immune system pretty bad and changed my body into a permanent state of fight or flight as adrenaline flooded my body constantly. This state of hyperarousal is a physiological response triggered by a perceived attack, muscles tense, hormones get released, blood pressure increases and the organs especially the heart work harder to keep your body primed for a battle . The body is not designed to constantly live like this and doing so can have a negative effect on your whole system. I was on permanent alert and my immune system could not cope with the stress resulting in me catching every illness going and taking longer and longer to recover. I passed all my GCSE's with a grade C or above which very much surprised me as I had skipped so many lessons due to the bullying. The M.E crept up slowly, getting worse and worse over time yet despite this I stayed on for a levels (at this point having no idea what was wrong with me and just assuming it was stress). Even though I had loads of time off ill I passed my a levels (I even got an A in one) and stayed on an extra year to do an AS level in English Literature. I never properly thanked the teachers who were so helpful and understanding but without them I wouldn't have succeeded in my studies. However, nobody would have had a clue how I felt inside because I was the most extroverted hyperactive loud mouth ever in the sixth form. I guess my over exuberance was because suddenly I felt free of the constraints that had held me in fear for the past two years. Looking back it was silly really because it gave people totally the wrong impression of me, I was perceived to be an over confident energetic person when in truth I was the opposite. I don't usually like to focus on or talk about my M.E much but now I have decided to open up and through these blog entries I am going to tell you bits of my life story and what it is like to live with a variety of health conditions including M.E.
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