I am not understood

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I have been out with a group of friends tonight, I have enjoyed it but it was abit upsetting. Eight of us when't out, we bet for a drink before we got a taxi down to the restaurant, I had to sit down and not one of them sat beside me. I felt like an outcast, they don't seem to understand my illness. They all are nice people and if I said anything to them the would be upset. I often avoid going out with them to avoid this situation. I hate been different but I can't help it.

I don't like crouds or noise but I know I have to overcome this. Going back three years I was the life and soul of the party. At universaty I was the chairperson for Rag week. I hate the person I am becoming but I can not help it. I can't explain to my friends as I don't want to highlight my weaknesses.

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8 Replies

  • Posted

    Lou, my heart goes out to you because you are a young woman. It is relatively ok for us old fogies to slow down but you still have a lot of living you want to do and you are still trying to do it. Unfortunately trying to force yourself to overcome it will actually slow down your recovery. Recovery from ME relies on the early stages of the illness being treated properly with rest and pacing no matter how boring it is.

    If your friends are not prepared to accept you as you are and agree to tailor your time together to include you then they are not being very supportive friends. Sometimes we have to let people go if they are no good for us. My son had to do this when his drinking was becoming a major problem and life threatening.

    One thing I believe is that we all have to grieve for our health and life that we have lost and, as with any grief, it is a process that takes time with all the same emotions of anger, denial, sorrow, that and grief brings.

    Now for the good news, you do come through it. When you have grieved for what you had that you no longer can enjoy you find yourself in a place where you can look for the things you can do and find pleasure in them. It is a long process and you must be kind to yourself and find people who will support you and help you along. We will all do that but you also need real life flesh and blood friends who will take you as you are and not expect you to be the person you once were.

    Sermon over (((hug)))

  • Posted

    I just wish I could wave a magic wand and make you better Lou. If only it was as easy as that. :wizard:

    As Alicia says, and as it is continually stated at the self management ME group I am attending, pacing really is the only way forward. Boring, I know and not easy to do, especially for a youngster. (Were you including me in the 'old fogie' bit, Alicia - :shock: )

    It is so important to alternate periods of activity with periods of really good quality rest, and to stop before you get too tired - mentally and physically. But, I'm sure you know all that. It's not so easy in practice.

    I think we all get exasperated by the lack of understanding from those around us, particularly friends - I'm sure they think that just because we have made the effort to actually go out, we are BETTER. The number of times I have handed out ME info. to friends, neighbours and work colleagues - it still just seems to fall on deaf ears.

    Thank goodness we now have the forum up and running - at least we know others can understand completely our frustrations at this ghastly ilness.

    Please don't give up hope - I had ME for three years in my very early thirties and it then completely disappeared for over twenty years - and I was able to resume a normal, very active life. The only reason for this relapse is entirely my own fault, - I pushed myself far too hard physically (for an old fogie!) - I know the exact moment it happened, and boy do I rue that day! sad

    Take care, and keep in touch - we are all here to support each other.

    Katie xx :hug: (group hug)

    (Have just called out to ask my hubbie how to spell fogie - he now wonders what on earth I am writing ....... this forum is my little secret!!) :wink:

  • Posted

    Oooops, sorry :oops:

    It was just a laughing smiley from bestsmileys. Sorry if I did anything wrong sad

    Serves me right for laughing at Katie I guess :roll:

  • Posted

    Ha Ha - :lol:

    Anyone new to this forum will think we are all totally barking!! :dog:

  • Posted

    :zen: I look like this :arrow: :twisted:

    I feel like this :arrow: :flan:

    and I need some othis :zzz:

    But erm......where did you find that character Alicia........can I have him/her?

  • Posted

    Tiny tears, google bestsmleys.com, there are loads of categories but I think the moderators would rather we used the forum smilies. It's just I couldn't find one suitable in this instance so I thought I'd try and see what happened.

    Thank you to the mods for allowing it to be posted :D

  • Posted

    Hi All

    Alicia, at what age does one become a fogie? :lol:

    Katie, we are barking mad! the technical term is "coping strategy" :biggrin: !

    LouLou, I dont go out much because of the crowds and the noise, plus I cant drink any more. Can never decide if its best to go and make the effort and take the consequences or let everyone think I am a boring so and so. People dont understand that you can make the effort to go out but that you are not better. They dont get it that cos you go out once normal service has not been resumed :evil: You know yourself they are nice people they just don't get ME which goes for most of the population!! :weird: You have to do whats right for you even though its c**p :wah: Have another hug :hug:

    Dale xxx


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