14 Replies

  • Posted

    Morning rose, just woken up and feel I haven't slept at all, how are you feeling today? Lisa
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    • Posted

      Morning Lisa, feeling alot brighter today, thanks but exhausted from my emotional week, a roller coaster of the good, bad and ugly. smile

      How are you?

        I'm going to be offline for a week as I'm starting to get migraines again ...a combination of stress and the computer.

      I love being online and connecting with people but it's a fine balancing act...don't we all know it?

      Be good smile

      Rosexxx

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  • Posted

    Hi Rose 

    i have never suffered from CFS /m.e but I totally understand it and the thought of suffering from it sends chills down my spine ... My first husband had severe m.e in the 1990s collapsed and was housebound for first year the room spun for the first 6 months  then took 5 more years to totally recover .. I have to admit I did not think he would recover .. I presumed he would be stuck with it for life as he had it so severe . The second year he managed to walk with me 2 or 3 times a week to collect the children from school .. That was fantastic the rest of the time he just sat in his chair ...the third year he started to venture out to friends houses for meals but not always .. But still in his chair struggling to walk to the toilet and back .. But he was improving then he lifted a little more and started to drive his car more we went on holiday .. He rested most of holiday but he coped .. Then he just started to improve gradually .. The 4th and 5th year he started exercising once a week at first then twice gentle then more and more after 5 years he started working part time .. By 6 years full time and he was over it ..yippee ..

    But his determination was to recover ..once he did recover ..he told me there were times he was hanging on to life by his finger nails ...mentally it is so hard not to become depressed

    hope that helps 

    p.s my current hubby has it milder he has never been house bound but it has affected him now for 5 years and he is beginning to improve noticeably👍

    So I do hate CFS/m.e Iand basically your body heals itself if you rest ..funny our bodies totally renew every 7 years .. And people often recover during that period if they can manage not to crash and burn with the illness and pace themselves .. .. 

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    • Posted

      interesting thought Sally, to 'just rest' it out?  would be interesting to to some trials on that one????????????????

      interesting too too to hear your previous hubby recovered fully? can u/he identify anything specific that supported the recovery?

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    • Posted

      He saw an m.e specialist who told him not to be frightened to use energy when he had it even if he had two days housebound recovering ... So after a couple of years of resting he started doing short runs collapsing on the door step at the end ... I was not happy as for two to three days he was absolutely dreadfully fatigued but then he'd get another wave of energy ... Again .. The specialist said your body has to learn to use energy and replace it .. Not quite the pace yourself therapy they reccomend now .. But it worked he slowly recovered from exercise quicker and then recovered .. He also went on high dose vit b... But I have met so many people who have fully recovered and they all took or did something different... And they never want to talk about it once recovered its a period in there life that was a nightmare they would rather forget ..almost a nightmare ...

      my hubby recovering pacing but also encouraged to push boundaries sensibly ..

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    • Posted

      thanks Sally. that's fascinating.  i guess, as no 2 ppl's expression of ME is the same, the means of recovery  will be equally disimilar. it's such an enigmatic condition. well done him and u for sticking with his recovery. hope current partner recovers too.

      C

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    • Posted

      Hi Sally,

      Thanks, that's really encouraging and I so believe that rest is absolutely essential to recovery, contrary to what the Drs say.  Your body can only repair itself with rest.

      So thank you for that.  It's great to hear when people recover from such devasting illness and that gives me hope

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  • Posted

    Another caption that is exactly the feelings that come from Fibro and CFS.....it is canny how I've just been thinking and talking to hubby re the same......when what we say is misunderstood, it is then that we feel as "if  everyone/others do not Know us.....we are ALONE in our thoughts, ideas etc"......yes we can cope for times when we are alone, but it is the Aloneness that comes when we cannot connect with those around us.....very well put...........(by the way, where do you find these captions....I would love to be able to print them out and make a mirage on one wall for us all to read, so that we in this house can connect ALL the time...they have all hit the right spot for me, and am very grateful for them).....xx Bronlol
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    • Posted

      Thanks Bron  All the pics with the "Living With Invisible Illness" at the bottom are my own creations.

      I find photos on the Net and then add the captions.

      All the ones  with speech marks are things that have been said to me and what I've said back....would like to start my own website one day for this...when I'm somewhat better.

      Feel free to take and use and enlarge anything you want.

      I'll post some more in a few weeks smile

      Rosexx x

       

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  • Posted

    Another great pic Rose.  Love it.  Going to try to find the website for 'Living with invisible illness' as I gather this is where you're finding them?

    Hope you're feeling better soon.

    Kath xx

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    • Posted

      Thanks Kath.  Glad you like them 

      Actually, they're not from a website.  I create these myself.  I gave it the name "Living With Invisible Illnes" so that the Outsiders would know what I'm on about.

      I am thinking of setting up my own webiste just for this sort of thing, but I'm too tired to do that yet.  The irony, eh?

      All the captions in speech marks are comments that have been said to me and what I've said or thought back but I knew that everyone would identify.

      I'm going to put some more on a a few weeks after I;ve had a good break.

      Rose xxx

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    • Posted

      Wow.  You're so talented.  I'm sure many people like us, as well as 'ordinary' people, will appreciate your website.  

      Hopefully you'll get plenty of rest soon and feel refreshed enough to make a start.

      Good luck and best wishes.

      Kath xxx

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    • Posted

      Hi Kath,

      How are you today?  I forgot to tell you that for the cartoon and  illustration pics I post , I just google "sick humour" or "invibislbe illness pinterest".

      Pinterest is the site where I'm going to place my own pics and captions..When I get the energy smile

      Hope that helps.

      Rosexx

       

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