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Hi it's Bex again
The past few weeks I've been getting a bit down, I'm not sure if it's just me who's feeling sorry for myself or not. I've only told a few people about my ME/CFS and they just treat me like I'm being lazy or making excuses for myself. If I feel really tired or have a bad day, I want them to understand how I'm feeling, that's all. Sympathy is not what I want, I just want them to understand. Am I being unfair ?
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No of course you're not being unfair, it just seems that most people who haven't experienced this horrible illness really do find it difficult to understand :roll:
And when you're feeling awful it's completely natural that you want people you care about to understand.
All I can say is that on this forum we really [b:ed54036f18]do[/b:ed54036f18] understand because we are all in the same boat :hug:
There are some leaflets and booklets for non-sufferers which I know some of the other members have used :thepost:
- I'll leave it to them to tell you about those as I'm not sure of the details
Take care :rainbow:
Unfortunately you will come across this problem all too often
In fact it should be put down as yet another symptom :roll:
You will find that peoples interest in your illness also wears off as time goes by - if only our illness wore off as time went by too :roll:
The only people who can and do understand what you're going through are other sufferer's like us - which is why i virtually live on my laptop :D
We are here for you whenever you need advice and support, laughter and friendship :wink:
Several of us are actually having our worst ever episodes at the moment so it has been a little quiet at times, but theres always someone around :P
You can come to us whenever you want - the more the merrier :lol:
Unfortunately some people are ignorant and don't understand. I must admit before i had this illness if someone had asked me what it was i would have thought it was just a tired thing.
Having the illness really opens your eyes.
I just hope the people that matter to you understand.
Take care :D
Bex, it's nigh on impossible to get others to understand how we actually feel, and it's just so exhausting trying to explain that most of us have given up bothering ........ :zzz:
And of course the fact that often every day is different doesn't exactly help :roll:
Just stick with your friends on this forum ..... at least we all understand your frustration and we can all share in each others ongoing exasperation
It is excellent, as some of the others will testify. The hard part is getting people to read it. If they do, it is quite an eye opener for them.
I replied that I have been suffering from ME, and she said .... 'Oh, there's a lot of it about these days' ..... end of conversation :lol:
If I hadn't laughed, I would have cried :evil:
a lot of people i know have known someone who's had this, which is great, but for the ones who dont its almost like ive had to teach them what this is, which is of course exhausting! :?
i cant remember if you said you'd been referred to a specialist clinic or not? this may help you deal with your own and others perceptions of this horrid old illness.
Even my partner doesn't seem to understand how I'm feeling. He has type 2 diabetes and I always help him and try to be understanding - and I assumed he would be like this for me. All he says to me is 'we all get tired' and that's it.
My friend is just the same. When I'm not too good she asks what's wrong and when I tell her, it's like 'oh OK'... end of conversation.
Thanks Katie K for your advice - I'll keep coming back to the forum and chat to all my new found friends here.
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im so grateful that she and others keep inviting me out because some people have given up, but its so depressing having to say 'sorry i cant...' you start feeling like a really boring person after a while...
ah well, thank goodness for everyone here :D
I sometimes wonder if we should make up a nonsense but impressive sounding Latin name for ME and tell people that it is a debilitating illness with no known cure :wink:
I suspect that we would just get greeted with a puzzled \"Oh really\" but at least they hopefully wouldn't just think we were lazy :cry: :D
Tha main thing that annoys me is when i say i feel so tired i could fall asleep right now, thay say 'oh, i feel like that also'
Some while ago I gave a friend (well she was at the time) a list of all the horrible ME symptoms ....... she read them all out loud and after each one said, 'Yes, I've got that, and that ...... and that '...... and then laughed out loud ..... 'Oh, I must have ME too then' and laughed again :evil:
I very nearly tipped her off the high stool she was sitting on :evil:
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