Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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missing out

Discussion in 'Lifestyle Management' started by Cinderella24, Oct 31, 2015.

  1. Cinderella24

    Cinderella24

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    Do u all feel usless like look in on family yet not able to do things they doing

    Like tday i tryd go out go food shopping only lil store i gt harly down first lane i had go car

    Feel like i cant go nowhere
    Doing anythg anymore i feel lot better i think if i didnt have pots on top me/ cfs sorry for rant
     
    Ellie_Finesse and AndyPandy like this.
  2. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    Sorry to hear you feel useless. We're all conditioned to believe we need to be useful. But what about a tree that's no good for timber, no good to burn, too crooked to chop down...but it shelters a world of critters, small animals feed and shelter there, you can sit in its shade and dream or play your flute....

    It's not easy to come to terms with all that we can't do. Slowly we find ways to remake our world and find what we are able to do, what really matters. Sorry if this is a clumsy post. There's a lot of grief involved in this chronic illness, especially letting go of who we were and what we used to do. Remembering that we are human beings, not human doings. [​IMG]
     
  3. Cinderella24

    Cinderella24

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    Thank u for yr kind thoughtfull post
    I do feel like i grieving for life i had i only 25 yet feel so old feel like letting my kids down am sorry moaning iam not ussally like this just havn bad week tomorrow another day hopfully good one for us all
     
  4. Effi

    Effi Senior Member

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    @Cinderella24 Not sure what I can add after @ahmo 's beautiful post... I see living with this illness as a skill we have to master. Not because we want to, but because we have to. The better we become at that skill, the more life feels useful despite all the hurt and discomfort. I hope you'll have a better day tomorrow. :hug:
     
  5. Cinderella24

    Cinderella24

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    Thank u for yrh kind reply i try to focus on good things at moment ot just lil harder to be postive at moment i will try i hope u to have good day tomorrow
     
    Effi likes this.
  6. Apple

    Apple Senior Member

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    I feel the same @Cinderella24 . We are the same age, and I have missed on so much. :(

    Have you considered getting a wheelchair to help you with these sorts of things?

    P.S If you're near an asda - they have mobility scooters that you can hire to go around the store!
     
    Jennifer J and Cinderella24 like this.
  7. CantThink

    CantThink Senior Member

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    Have you tried using a wheelchair or scooter? You could borrow one (lots of supermarkets and garden centres plus big stores like DIY ones and IKEA type places have them and so do the National Trust and attractions like zoos and museums, or the Red Cross loans wheelchairs short term if you want to use one more).

    IME The issue isn't just walking/exerting, but being upright. So if you can be seated (legs up is even better but difficult to do unless have a special wheelchair) you might find you can manage a little easier and for longer. Compression socks might help a bit.

    Being able to do stuff at home - it is harder to adapt I think. I use a perching stool in kitchen. All other times I'm sitting down as much as possible and legs up when I can do so. I guess some of our family life has been scheduled around this.
     
    Ellie_Finesse, ahmo and Jennifer J like this.
  8. Ellie_Finesse

    Ellie_Finesse Senior Member

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    Hi @Cinderella24, am so sorry you feel that way :hug: I don't know what to say to you to make you feel better, often there just isn't the right words.

    I have been feeling the same as you lately. My 14 yr old daughter smiled at me this morning and said "Mum, I love you and I know your very poorly and can't do much, but you need to be strong and positive. You will get on your bike again". Bless her, she means well must be hard for her too. I think we forget that sometimes in our suffering. She gave me the swift kick I needed. :).... That is until the next time I have wobbly moment ;)

    Just to add to what @Apple said..... Some Tesco stores have mobility scooters too that you can borrow when you are shopping.
     
    Tammy and Jennifer J like this.
  9. digital dog

    digital dog Senior Member

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    The guilt and disappointment trying to look after a child when you are ill with ME is soul destroying.
    I don't think I can live through it sometimes.
    So much life lost.
     
    ahmo likes this.

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