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Hi, I am 22 years old I was diagnosed with CFS when I was 16. They think it was brought on by a bad virus I had (causing arthritis and meningitis like rash). They told me it would only last a year and I clung onto that hope for longer than I probably should have. And now its eight years later and I have been through hell and back to the depths of depression. I still have bad days and very bad days but I have a fantastic supportive family and (finally!) have great friends.

My question is this? Does anybody struggle with the idea that M.E/CFS is not a "real" illness? find it challenging sometimes because they don't look sick? Or sometimes feel they are not sick enough?

It would be nice to meet people :)

Peace Out! :3

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  • Hi,

    I've felt that maybe my doctors thought I was experiencing something that wasn't even real. But, I plucked up the courage to speak to my doctor one time, and said "This is Real, you know". His answer was "I know it's real". I then said, "do you believe me, or are you just humouring me". He said that after all the years of knowing me, it was very obvious to him that the condition I had was debilitating and I was ill. He suggested I should do exactly what my body is telling me to do, so sleep when I'm tired, sit down when my body aches, and stop whatever I'm doing when my pain is enough to make me scream. I've listened to that advice, and although I do quite often, do toooooo much, I always remember my doctors words, so for the next week or so until the problems have subsided, I do exactly as I was advised to do. The doctors do believe the condition is real, they just don't know why, or how to treat it.

    Am very pleased to see you've got good family & friends around you, as that will help with the depressive symptoms that arise from feeling exhausted all the time.

    Take Care.

    Tearsofaclown.

  • Hi! Thank you so much for getting back to me. How long have you had M.E? I know what you mean about doing too much I often push myself. Particularly at this time of year. For example today met up with two friends (separately) to swap xmas pressies. I'm going for a nap now :) Hope to get to know you.

  • Hi LipstickLolita,

    I was diagnosed with ME nearly 7 years ago. Mine came about following an operation that went wrong, and which involved a lot of antibiotics afterwards for the infections I managed to gather while I was there! As it all happened within the space of a few weeks, it was thought I had cancer or MS. Following every kind of test and scan possible, it was proven that I needed Vitamin D for my bones, and the other blood tests showed high levels of inflammation and infection. I was very poorly, and my doctors were concerned that I couldn't fight off the infections. I did recover from them to a degree, although I still have regular re-occurrences. I was also collecting every virus that did the rounds at the time. I still have a rash of tiny red spots all over me, and which won't go away. They aren't anything to worry about, but it's assumed they are the result of having a lot of blood infections. Then, steroids made me balloon into a monster-size, and although I've lost some of it, the rest of it just won't go! grrrr! But, after all this, I'm still here!! The ME arrived around the same time, and put me in bed for a nice lengthy rest. My bed still calls me for very long sleeps, while at other times, I am awake for days & nights. The whole thing upset my whole system, and now it's just the ME that I have to contend with, as the other things are more manageable. A wonderful and colourful cocktail of drugs keep me going, and they do help to an extent, with the pains. As the whole episode pulled me apart, I also take antidepressants, as Boy, did I feel low! These days I just follow the advice of my doctor, and don't even attempt to challenge his advice. I keep taking the tablets, and do Only what my body will allow. Like you, at this time of year, it just aint easy to rest for long, so I do a few things, then rest for a while, then continue in that pattern. Taking twice as long as any other human being to do something quite small. Today, some new curtains have arrived that I ordered, and after I'd wrestled with the packaging and held them up to look at, I had to sit down for a long rest, not even able to make a cuppa. Fortunately, my Husband who should be called my Maid, went and made me a drink and I've had to sit and watch him hang my curtains. Before all this health issue, I would have done the curtains myself, and still carried on with more and more things. I used to work 14 hours a day, with only short breaks between, now it is more likely for me to sleep for 14 hours and only be awake for a short time. ME is awful, and not like my 'old' self at all. Sometimes, I think that other people think me lazy, but I do wish I had that much choice on the matter. Being lazy involves the choice to stop in bed, or stay on the sofa, or not bothering to do something or another. I don't get to decide what I can or can't do, I'm just a slave to ME. Try to keep a sense of humour, as you continue with the battle of ME. Laughter being the best medicine of all. Hope this cheers you up, and makes you realise how very odd this condition is. Take Care, Tearsofaclown.

  • Thank you for your inspiring message! You've had a time of it! I totally identify with a lot of what your saying. Especially about being lazy. I feel lazy most of the time even when I know I can't physically do things I still feel guilty (not guilty enough to give up my duvet days thought :P). My friends always go on about how organized I am but I have to be in order to get things done and also plan rest time. Also I think I have more free time than they do and not as much of a life :( But I do try to remind myself how lucky I am with this illness some people are completely bed bound. I just feel like a bad 22 year old at times when I need to ask my friends if we can sit down. Your husband sounds lovely :) My mum, room mate and grandparents do a lot of stuff for me.Do you have quite a close family? Hope today was a good day for you :)

  • Hi LipstickLolita,

    It's taken me a while to get back to you, and I apologise for this, but had to spend lots of time sleeping! Don't know where the weekend went!?! I am a lucky person in many ways, like you, regarding the support at home and my husband is lovely (sometimes!!). I am old enough to be your mother, but I do enjoy talking to people of all ages, so I hope you're ok with that? My children are both in their 30's, and I'm a grandmum to 3 kids, 2 girls aged 14 and 12, and a boy aged 7. They all belong to my daughter, and she's had a very rough deal, as the dad passed away when the boy was 2, of cancer. But, she's a lovely girl, and I'm very proud of her. My son is the younger of my kids, and he lives at home, preferring to be an uncle, and is not keen on being a dad, or having all of the responsibility that comes with it. Typical man, I suppose! We are a very close family, and I adore them all. Since having ME/CFS, life has changed beyond all recognition for me, and I've gone from being totally independent, to totally dependent. Not nice at all, when you're used to taking yourself everywhere and jumping in the car, whenever the mood takes you. Now, I have to wait for someone else to drive, as it takes so much out of me when I do drive. The problem is, when I'm feeling Well I tend to do too much, and that usually includes taking myself out in the car. Then, for the next 3-4 days I'm so exhausted that I can barely stay awake and am in horrendous pain, so need an increased amount of pain-relief, causing me to sleep more! I never regret doing things for myself, and just wish it didn't cause such problems. It affects the whole family when I can't do anything, as they have to fend for themselves. This condition is very, very odd. I love the way you described stopping in bed, as "duvet days", that's a great way of saying it, and sounds much less depressing than "sleep days", which is what I call them. I used to be the most organised person but now I get such a foggy head, that I cannot think clearly. This drives me crackers, because it's not like me, to be so dis-organised!!! As you say, a lot of people are completely bed-bound, and I can't imagine how awful that must be. We must be quite lucky, to be up and about for some of the time. It can be difficult when friends invite me out somewhere, and at the last minute, my husband has to contact them to say I'm asleep and he can't wake me, to go out. I hope you are managing to get out with your friends, as it does a power of good to be in great company, and doing things like a "normal" person. I really hope that's what you're doing today, and if not, then I hope it won't be long before you are out and about with your mates. Take Care of Yourself, and keep smiling. Tearsofaclown.

  • How are you getting on now?

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