classic ME experience

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just thought i'd share an experience we're all oh so familiar with.... :roll:

i went up to the high street earlier to do some xmas shopping. :gift: like all us pacers, ive got as much on line as possible and the rest in little short journeys.


i'd got to that wibbly/dizzy stage :weird: and was just in lidl getting some bread before going home. queued for a while and was thankfully about to pay when this woman came up to the till with some flowers and said, 'i did just queue a moment ago, but i want these as well, can you just put them through for me?' :puff:

when she saw me looking at her she said, 'oh you don't mind do you dear? ive got a bad leg...'

i didn't really mind as the queue wasn't too bad and it was only one thing as opposed to several trolley loads, but it is typical of the way people look at us and see an able bodied person, never dreaming that that person might be about to keel over :roll:

she thanked me again at the end which was nice of her, but i couldn't help saying,' that's ok, i know exactly how you feel, ive got ME', which of course she didn't understand at all.

kate helped someone at her shop the other day who actually had a little card saying something like, 'ive got CFS so may need help/if you find me in a heap here's what to do' or something similar :shock: now [b:3bf5f27fa7]where[/b:3bf5f27fa7] do you get those?! :o

hope i haven't sounded too grouchy, was just one of [i:3bf5f27fa7]those[/i:3bf5f27fa7] situations that only other pacers will understand...

oh, and had my DLA turned down sad guess will just appeal in the new year.

Trees x

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21 Replies

  • Posted


    kate helped someone at her shop the other day who actually had a little card saying something like, 'ive got CFS so may need help/if you find me in a heap here's what to do' or something similar :shock: now [b:793efcb30c]where[/b:793efcb30c] do you get those?! :o


    I have got one of those in my purse, it has space for emergency contact and doctor's details.

    I got it from the ME Association, 60p for 2 (I think) when I ordered some leaflets. I'd send you one but I mucked up the first one and had to throw it in the bin? :roll:

    you could make one on your PC :D

  • Posted

    i didn't even know they existed! :shock:

    alicia, do you think that i can still get a disability sticker for my car if i dont have DLA?


    T x

  • Posted

    It will be harder Trees, but I got mine before I got DLA. smile

    You need your doctor to support your application and if he/she agrees to then ring your local social services office and ask them to send you a form for a Blue Badge. :D

    If you are not blind or have limbs missing or in receipt of a war pension then the whole application is judged on how far you can walk without pain/difficulty and whether you use any walking aids.

  • Posted

    Oh Trees, I'm really sorry that you had your DLA turned down sad

    That's a great Christmas present, I don't think :evil:

    Let's just hope you win on Appeal :?

    Gosh I've never heard of one of those cards ..... what a good idea smile

    I think we can all identify with your lidl experience Trees, I dread supermarkets, especially Sainsburys .... it's just like an assault course and sooo noisy .... I don't go anymore :yuk:

    I popped into a local dept store the other day ...... it had steps leading up to it and as I reached the top one I groaned cos my knees really hurt ...... a guy coming the other way said 'Gawd, you'll have to get yerself fit'.

    If I had had more energy, I'd have smacked him in the kisser :evil:

  • Posted

    My NYR will be to never assume anything or jump to conclusions about anyone without finding out the facts first. :oops:

    No one has time for anyone anymore. I would like to go back a generation and live in the village where my mum was brought up. Everyone had time for everyone then and the pace of life was nice and slow. Don't think people had ME then, plenty of infectious diseases but no stress related ones. :roll:

  • Posted

    [quote:8803b6cec3=\"alicia\"] Don't think people had ME then, plenty of infectious diseases but no stress related ones. :roll:[/quote:8803b6cec3]

    oh but they did alicia! sad charles shepherd and a few other experts think it may have been what was previously known as neurasthenia, nervous exhaustion, and a whole heap of other oddly named things.

    plus people used to think women were pretty useless anyway - in victorian novels women are always taking to their beds for days on end due to a 'weak constitution' or similar :roll: they probably had ME! :shock: :lol:

    but i definitely agree that modern life [b:8803b6cec3]is[/b:8803b6cec3] much more stressful and mentally challenging, and that is probably creating more cases. certainly of mental and social illnesses too. :weird:

    i often think how nice it would be to a find a commune in some warm country and just live off the land.... :D i did that in romania once. i lasted ten days before shaving my legs and heading back to party in istanbul! :lol:

    Trees x

  • Posted

    I haven't shaved my legs for 3 months, I flatly refuse to waste energy on things that are of no consequence. Who sees my legs anyway between October and June? No one , and my skin gets so dry and itchywith constant shaving. They do look a bit rank though :roll:

    Underarms, that's a different story. :wink:

  • Posted

    Too much information ! :shock:

    They think Florence Nightingale had ME don't they? :nurse:

    How are you Alicia ? Are your hands any better at all, and what about the vertigo etc ? :?

    Good you'll be able to have a good chat to someone about it tomorrow. smile

  • Posted

    Actually Daisy the sharp pain in my hands has reduced to a dull thud which is easier to bear, thank you. I am still getting the random electric shock sensations and weak grip though. Perhaps it is something that will never have an answer and will slowly drift away. Hope so.

    Still have the giddies though :cdouble:

    I have a volunteer driver,a retired gentleman called Wilf, taking me tomorrow. I am actually going to get in a car with a strange man and go off with him. :shock:

  • Posted

    AaaaaHHH! Don't know what I did but have just lost a long post! :evil:

    I'm sure you and Wilf will get on famously :D

    I had volunteer drivers on both my trips (long - an hour and a quarter each way) to the ME clinic and they were wonderful, very attentive, I felt like royalty 8)

    One thing though, they both came early - probably like to allow plenty of time. :zen:

    I think feeling giddy is really horrible (almost as bad as feeling sick !); do hope they can help you with it.

    Am now going into the garden to see if I can resurrect last year's Xmas tree :xmastree: (for once , this picture is accurate!!)

  • Posted

    Daisy, you are sweet, that is a really nice post, thank you xx
  • Posted

    Crikey, Daisy do be carefully digging up a flipping Tree :shock: :xmastree:

    I find that doing anything heavy like that or even moving a single piece of furniture always has to be paid for later sad

    Why don't you just stick a few baubles on it where it is ...... and be done with it ...... :roll:

    And yes, they think Florence Nightingale definitely had CFS and also ..... oh gawd, can't remember :doh: ... I did a posting about it somewhere ... Darwin or Einstein or someone like that :?

    Also in Victorian times it was referred to as 'a touch of the vapours' .... mind you I think that may have been cos their corsets were too darn tight :yikes: and they came over all funny :weird:

    Don't have that problem these days ... thank goodness for stretch trousers ... mind you, think mine have reached their limit :roll:

    Good luck with Wilf, Alicia ... with a name like that he can only be a true gentleman :lol:

    As for your hursuite legs (spelling? .. didn't feel I could ask hubby that one :roll: ) it reminds me of the fab 'Mrs Doubtfire' film, where she excites the bus driver ...... :lol:

    So do be careful when getting out of Wilf's car ..... you don't want to over excite him or you may never get home again :lol:

  • Posted

    good luck tomorrow alicia :D

    my shaving has always been sporadic but at this commune using soap was a real ecological no-no. :o im not a vain girl but it was summer and i was wearing skirts, and had to go back to turkey and im dark haired - my legs looked like two big caterpillars. :shock: :lol: so got a bucket of hot water and hid behind the toilet shack and did them... :oops:

    sorry rambling, brain all over the place, taking ages to write these :?


  • Posted

    Oh dear, oh dear, what IS all this talk about shaving?? :shock:

    Trees, you really paint a wonderful picture! I shall be dreaming of caterpillars tonight. :lol:

    Don't worry, Katie, the tree was in a flower pot and is only about 3 feet high (digging?? what's that :? ) Mind you, I had to scrape off an army of small slugs before I brought it inside.

    :xmastree: Then I managed to fuse the fairy lights :shock: so now I'll have to buy some more.

    Yes,you're right, I should have left it where it was, maybe with a fairy (in a mac) stuck on the top. :fairy:

    Bah flipping humbug. :steam:

    It's a shame Wilf isn't called something a little more upmarket ....Ralph, perhaps, or Charles, but I'm sure he'll be lovely, Alicia . :wink:

  • Posted

    Well, I actually think' Wilf' is rather a sweet name ....... I'm sure Alicia will have no problems with the likes of him :smiley:

    Well, you will all be just soooo envious to hear ...... but when I was about sixteen, I shaved my legs and not a single hair has ever grown back :smiley:

    As smooth as a baby's bottom :angel:

    Night, night folks :D


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