| More about me | |
| MORE ABOUT ME.
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 MORE ABOUT ME I had done serveral radio and newspaper interviews on M.E but wanted to reach out to more and more people and thought a website would do that. It would be a very personal thing and I'm very proud of the way the site has grown over the months. So many people have visited the site and left great commets. This has inspired me to carry on with the site. It does make me ill sometimes by doing the site,but its worth it when I get so many great comments. I have always said that even if the site only helped one person then it would be a success. Much to my delight it seems to be helping many people. Any ideas, a story or even a poem would be great form anyone. Any ideas to help make the site better are always welcome. It does'nt have to be M.E/C.F.S related. I've just turned 24 and am engaged to Katy who's birthday it is next week. Katy gives me so much support as everyone close to me does. Katy and I have been writing a book on M.E. At the mo I'm trying to find a funder towards publication costs. I'm so lucky to have so many people that care about me. My mum and Katy are the 2 people I get most support from. Katy and I are soon getting a place of our own. I also write an article for my local M.E newsletter. Katy and I are looking for a house. The right one will turn up soon. This section is part of mine and Katy's book. What exactly is M.E? There are so many different theories why and how people get M.E. The meaning of M.E is MYALGIC ENCEPHALOMYELITIS. Myalgic basically is to do with your muscles, and Encephalomyelitis is to do with your brain. M.E affects you mentally, physically and emotionally. M.E attacks your central nervous system, which are your back and your brain. When you think how much of your body is run by your brain and your back, then you realise the size of the problem. What are the symptoms? Obviously every sufferer has a different degree of symptoms. Some may have more symptoms than others, and some might have the same symptoms better or worse than others. Well the main symptom is constant tiredness and fatigue. Abnormal exhaustion, which can take days or even weeks to recover from. Other symptoms are flu like symptoms, severe head and stomach-aches, muscle and joint pains, sore throats, muscle twitching, muscle spasms, Lack of short-term memory, lack of concentration, disturbed sleep pattern, fever, chills, nausea and it doesn't end there. I will describe a few of my main symptoms and how they affect me. Well as you know my main symptom is constant tiredness. How does this affect me? This affects my day-to-day life. With little effort I become very tired physically and mentally. Having a little stroll will tire me out. This I think is the symptom that gets me down the most. That's when I get down that is. This is the symptom that affects every part of your life. Well in my opinion it is. I don't like it though when I'm so weak I can't do things for myself. Like I will need help sometimes getting from one side of the room to the other. When you're tired it will affect other parts of your body. Even a healthy person can say when they are very tired it affects their concentration. This is what I'm going to describe next. Well concentration is another of my main symptoms. How does this affect me? Well imagine your doing something and your concentration just goes. Well that's what it's like for me. I'm not talking about it going once in a while, it's all the time. Some days it's better than others. Sometimes it can go in seconds or it can last a few minutes, but if I try to concentrate for too long I get a very severe headache. One example is when I'm having a game of domino's I'll be ok, but as the game goes on the more mentally tired I get and I make easy mistakes. Or like when I'm typing this book I have to keep stopping. This is for a few reasons, but concentration is the main one. I'll be typing and then suddenly I'm in a different world and I'm in a daze. I usually stop when I feel my concentration is very bad. This is a common symptom amongst most M.E sufferers. The next thing I'm going to describe is the loss of short-term memory. How does this affect me? This is another one of my worst symptoms. Well this is a very bad symptom for a lot of sufferers. This affects me in a variety of different ways. My long-term memory is excellent. I find it hard to remember people's names sometimes. Even people I've known all my life. I have a good way to get around this though. I just say love or mate till I remember there names, and in most cases no one notices I've forgotten their name. I have called people wrong names before. I forget things like appointments, to ring people and so on. There is one solution, which has made life easier for me and I think it would for other sufferers as well. I have a notice board that tells me everything I have to know, from hospital appointments to phone calls and so on. The one thing I really hate is when I'm on the phone and I totally forget what I'm talking about, and this happens numerous times in a long conversation. When this happens it's a mixture of bad short term-memory and concentration. It's very frustrating I can tell you. It's like some of my memories are locked up in a safe and the safe open when it wants to. Like I'll try and remember something and I can't but it'll come to me when I don't need it. When I try to remember things, I get a severe headache if I do it for too long. The next thing I'm going to describe is joint and muscle pain. How does this affect me? Once again this is a main symptom in my illness. Now this affects me in a very big way. I have a lot of problems with my joints and muscles. For a start I get a lot of pain in my lower back and shoulders. That's were my main trouble is. That in it's self limits me to what I can and what I can't do. I also get trouble in my arms as well. For this reason I have trouble sometimes finding a comfortable position. I've found that having a nice hot helps relieve the pain. I'm now going to describe muscles spasms and twitches. How does this affect me? I often get twitches and muscle spasms. These can be extremely irritating I can tell you. Like I can be writing a letter and I'll start with my muscle spasms or twitches. Even though I get these a lot it still freaks me out a little. I can be woken up from my twitches and I hate it when I have them in public places, especially when they are bad ones. I'm now going to describe sleep. How does this affect me? Well sleep affects everyone on the planet. Sometimes M.E sufferers find it hard to sleep at night, even though they are extremely tired. I myself sleep during the day as well as night. I call these little naps as they are only for a short time. I hate it when people say you can't sleep at night because you're sleeping in the day. I've just come out of a bad patch where I found it really hard to sleep at night. Now for a M.E sufferer we go to bed tired and wake up just as tired. It's as if I hadn't been to sleep at all. Since I've been ill I can't remember waking up refreshed. It can really get to you not being able to sleep properly and your sleep pattern disturbed. My doctor put me on sleeping tablets, but after a while I stopped taking them. I didn't want my body to rely on them. Now I'm going to describe is Impaired temperature, chills and fevers. Well how does this affect me? This is one of the hardest symptoms for me, and took a long time to come to terms with. I am constantly cold. I often ware two jumpers and a jacket when IĂƒÆ’Ă†â€™Ăƒâ€šĂ‚¢ĂƒÆ’Ă‚¢ĂƒÂ¢Ă¢â€šÂ¬Ă…¡Ăƒâ€šĂ‚¬ĂƒÆ’Ă‚¢ĂƒÂ¢Ă¢â€šÂ¬Ă…¾Ăƒâ€šĂ‚¢m outside, and even in summer I usually ware a jumper and have a jacket with me. Sometimes in the summer I just think sod it. I'm going to be cold anyway, so I take my top off and sunbathe. Of course I get a few stares for wearing jumpers in summer, but I don't give a rats. My health comes first. I usually ware a jumper to bed over my pj's. There's one advantage of being cold all the time. When it's boiling during the summer, and everyone is trying to cool them selves down, I don't have to because I'm already cold. Now occasionally I do get warm. What causes this I'm not sure. I wish I knew, but usually when I get warm, it normally means that I'm coming down with a fever, which makes me very ill and again makes me virtually bed ridden. If there's any thing about like the flu or colds or a bug, I'll usually pick them up. The next thing I'm going to describe is alcohol intolerance. How does this affect me? Well this is a symptom I can keep under control, providing I watch what I drink. In the early stages of being ill, my sensitivity wasn't that bad. As you'll read the book, you'll see it took me a while to find alcohol that I wasn't too sensitive to. After September 98 though that's when my sensitivity got really bad. Alcohol intolerance is a common symptom. I like to have a drink sometimes but have to really take care. Even with the drink that I'm not too sensitive to, it still makes me ill. At least with these ones though I don't get ill straight away, but with everything else I get ill more or less straight away. If I drink I make myself worse. Unlike most of the other symptoms I have some control of this symptom. The last thing I'm going to describe to you is panic attacks. This is a very horrible symptom for me. Walking in town, or up the stairs can trigger it off. I usually get them when I'm out of breath. I get out of breath very easily. However I can just be sat down and can get a panic attack. After a panic attack I feel even weaker and my bone hurt much more. It's very hard for me to do anything without getting out of breath. A simple task like cleaning gets me out of breath very quickly. Pushing a hoover gets me out of breath in seconds. This I can tell you is frustrating. I know it's going to very hard for me when I get my own house, and I don't know how long I'm going to be ill for. I can't live at home forever. The above are my main symptoms. End of section. WHAT CAUSES M.E Well nobody really knows the answer to that, but who ever comes up with the answer will become very popular very quickly. Well You generally get M.E after a viral infection, But many things can trigger off M.E . Stress can cause M.E as can a bout of flu. It is alos thought that M.E Is already present in the body, and it's just waitng for something to trigger it off. YOUNG PERSONS M.E. ABILITY SCALE (devised by and printed in the book 'Somebody Help ME' by Jill Moss BA MEd) 100% No symptoms even following physical or mental exertion. Able to study full time without difficulty, plus enjoy a social life. 95% No symptoms at rest. Mild symptoms following physical or mental exertion - tire rather easily but fully recovered next day. Able to study full time without difficulty, but slight restriction on social life. 90% No symptoms at rest. Mild symptoms following physical or mental exertion - tire easily. Study full time with some difficulty. Social life rather restricted. 80% Mild symptoms at rest5 worsened by physical or mental exertion. Full time study at school or college difficult1 especially if it is a crowded, noisy environment. Home tuition or part-time study without difficulty. 70% Mild symptoms at rest, worsened by physical or mental exertion. Daily activity limited. Part time study at School/college tiring, restricted social life. With home study and careful pacing of activities, some social life is possible. Careful exercise may be possible: walking/swimming/cycling. 60% Mild to moderate symptoms at rest. Increasing symptoms following physical or mental exertion. Daily activity very limited, although gentle walking/swimming/cycling is possible. Unable to study with others. Short (one or two hours) daily home study is possible. Quiet, non-active social life possible. 50% Moderate symptoms at rest. Increasing symptoms following physical or mental exertion. Regular rest periods needed. Simple, short home study possible when alternated with quiet, no active social life. Not confined to house, but unable to walk much further than 200 metres. Enjoy a trip to the shops in wheelchair. 40% Moderate symptoms at rest. Moderate to severe symptoms following physical or mental exertion. Not confined to house, but unable to walk much more than 100 metres. Can manage a wheelchair outing to the shops on a quiet day. Requires three or four regular rest periods during the day. Only one large activity possible per day - friend dropping by doctor's visit or short home study etc. Rest of the time spent pottering around. 30% Moderate to severe symptoms at rest with possible weakness in hands and arms. Severe symptoms following any physical or mental exertion. Usually confined to the house but enjoy a quiet wheelchair ride or a gentle walk in the fresh air. Most of the day resting, although some small tasks possible (eg. letter writing). Mental concentration poor and home study very difficult indeed. 20% Fairly Severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except rarely. Confined to bed/settee most of the day but able to sit upright in a chair for short periods. Unable to concentrate for more than one hour a day. 10% Severe symptoms at rest. In bed the majority of the time. No travel outside the house. Concentration very difficult indeed. 0% Severe symptoms on continuous basis. In bed constantly. Unable to sit up. Unable to care for yourself. Reproduction of this scale is permitted with the credit: "Adapted from the Karnosfky scale by Jill Moss for the book 'Somebody Help M.E.'" |
| this is one of my close friends Victoria's website. It's fab. I think you'll like it
viks website |
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