Explaining my symptons

Posted , 5 users are following.

Hi All

If its not bad enough having to live with M.E, i feel im constantly having to explain my symptons to people, but i do struggle to get across how severe our lives are affected by M.E and the symptons we have, even when i go to the docs with a problem i struggle to get across how im feeling, as if theres no words to explain whats wrong with me ??

I do try to say that anything i do is exerted 10 fold, so we need 10 times more time to recover from the things we do than people without M.E, and constantly feel hungover, achy, brained fogged, tired and really not with it, but still feel there not understanding our illness and symptons.

Anyone else struggling with this ??

Take care

Jay xox

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7 Replies

  • Posted

    Hi there Jay

    Yup, we know only too well just how frustrated you feel - it is so difficult to explain to others, it's also exhausting and exasperating. I keep thrusting my ME book at friends where I have ticked al the symptoms that affect me (most of them), and either they don't even bother to read it or, even more annoying, laugh, and say 'Oh I've got all those too' Ha :bleep: Ha!

    One of the main problems is that we all look 'normal' - that is really evident on the course that I am on, and we all commented on it. But quite a few had been unable to drive themeselves there and several actually dozed off during the course of the morning. Everyone has had to give up work.

    So what the hell do we have to do to get others to understand - maybe if we dotted our faces with red felt tip pen or something like that! :weird:

    I had to see a doc last week (re the ear plug saga) - she checked my BP whilst I was there and it was perfect!. I commented that I was pleased as I can no longer exercise cos of ME. 'Oh, exercise is very good for ME' she said. :steam: 'Scuse me :huh:

    There's article in today's Daily Mail which includes a check list to see if one is at risk of developing dementia - I could answer 'yes to all of those - most of them are also ME symptoms. So that has cheered me up no end.:shock:

    Happy days!!!

    Katie x smile

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  • Posted

    Firstly Katie, if you read this, many many thoughts and good vibes winging their way to you oday. Hope all goes well.

    For those who don't know Katie's daughter is getting married today.

    Now back to Jay's thread - I HATE being told how well I look cos it seems the better I look the worse I feel :shock: No one wants to listen, even my husband. He only wants to know when I am feeling ok and can do things with him. Consequently I am going to the cinema this afternoon to see Indiana Jones. I bought some foam ear plugs yesterday to make it more copeable with and we are going to an early showing. I'm still not really looking forward to but I will do it for him.

    One thing I noticed the first time I walked intot he waiting room at the M.E. clinic I go to was how everyone sitting there looked like I felt. It was reassuring in a funny sort of way.

    The conclusion I have come to is that M.E. doesn't exist in the 'real' world, hence the comment about exercise Katie. But in a funny way she was right. Graded exercise is good for M.E. in line with what you can manage. For instance when I got my little dog I walked him for 5 - 6 minutes twice a day. Now I walk him for 20 minutes once or twice a day. Any more than that is a bad idea but in time it might increase, who knows. When my legs hurt and my energy is -zero I drive him to the rec and sit on a bench whilst he runs around, or do my 180 degree turns whilst he races back and forth. It always makes me feel beter that not going out with him at all.

    But Katie, you do exercise, you do light gardening, I've herad you say so, that is exercise.

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  • Posted

    Hi everyone

    The forum seems to be back on track thank goodness - I think I would have had a sharp decline in my ME if it carried on being so irratic for much longer - I have really missed all our amazingly brilliant postings! smile

    Thanks for your good wishes Alicia - at least it looks as if it is going to be dry and the sun is trying to break through - it's very warm though. Didn't sleep well last night - typical :roll: - ended up getting up at six cos that blasted blackbird was at it again. :evil: Hence having time to make a few postings to my friends - it's calming my nerves :yikes: .

    Re. the docs remark about exercise, I suppose I was being ultra-sensitive - if she had said GRADED exercise I wouldn't have reacted. She made me feel as if I slopped around all day doing sweet FA. She's not my usual GP but I forgive her as she did get me in to see the ENT surgeon even though he had a full list. Your foam earplugs sound much more sensible Alicia. Hope you enjoy the film - I always found cinemas far too noisy even before my ME days!

    Right, well I'd better go now and TRY and make myself look beautiful - that was a joke ! It's getting the tights on which will be the biggest challenge - hold-ups fall down on my skinny legs so they are a non-starter. :roll:

    Have a great weekend everyone.

    Katie x smile

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  • Posted

    Well it isn't back on track here :evil:

    I think the 30 second time out needs to be extended. the posts hardly ever load before the 30 seconds is up. It takes loads of tries :cry:

    As for the hold ups, aren't we funny creatures. I can't wear them because my upper legs are too thick :roll:

    hope you have a lovely day Katie. xx

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  • Posted


    Firstly have a lovely day Katie :D You could have had your legs tangoed with St Tropez :lol: that would have eliminated the need to wear tights :roll:

    Jay you are so right. Only the people who really know me think i look ill. Its in my eyes apparently :shock:

    To everyone else I look fine. I also feel like I have a massive hangover all the time especially in the morning when I wake up and the room is still spinning!! :oops: Seeing as I am intolerant of alcohol these days hangovers are a distant memory :bubbly:

    My ME affects so many of my bodily functions people are asleep by the time I get to the end of the list :lol:

    At least on here you lot understand smile

    Dale xxx

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  • Posted


    I can totally relate to being unable to explain the symptoms, when asked what ME is by someone who doesn't know I get all mixed up and forget half of how I feel half the time and end up feeling stupid and pathetic, there are just soooooooooooo many symptoms it sounds made up and really vague and I have trouble getting across how bad it really is. I've also been told by a neighbour that he can see when I'm having a bad day by my eyes although I'd have thought the struggling to walk and talk would have been a bigger indication!!

    Take care all

    michelle x

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  • Posted

    Hi everyone

    Thanks for all your kind wishes for the wedding (which was perfect, thank goodness). Mind you, we haven't had the drinks bill yet - my daughter has remarked several times that her friends couldn't believe how often their glasses were topped up! Think we could be in for a:shock:

    It's interesting that several of you say that it is your eyes that are the give away re. ME. That's how my nearest and dearest know that things aren't right - and when I was working the same comments were made - that's why I wear tinted specs most of the time.

    Still feel as if I've been put through a mangle several times and then ironed on both sides (and I think spray starch was also used as I am as stiff as a board.)

    I've got my ME self management course again today - don't really feel well enough to go - but I will drag myself somehow! Still not sure if it is really helping though - will keep an open mind. At least no one will mind if I nod off to sleep.:zzz:

    Take care everyone

    Katie xsmile

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