Disabled and desperate



  • your spirit is alive and well patootie

    keep going


  • patootie

    Yes we are all real people, some fit ,some fiti-ish, some try desperately hard to find it

    Some of us do have real severe problems... my wife is a sick woman, much like yourself, not had a chance since day one really .. but like you, she has a life, no matter what, she does'nt give in

    My youngest son Phillip now 19, he's been so ill, never even thought or expected him to live

    Some fellow runners say ... Mick your doing well are'nt you, my reply is , just like you Jan , i've been through almightly HELL getting there

    There are few in life that really can comprehend how we do get there, they really do mean well, even my neighbours and family have NO idea, as much as they think they do

     ME Mick myself...

    I am so very , very lucky and i know it, extemely good health, extreme fitness levels, but mentally low at times.... it's hard to find time for myself, i always seem to be worrying about my family

    But for you Jan- patootie

    We are all here for you, to listen and help where ever possible

    feel free to shout, holler, scream, winge , whine what ever

     i just feel that one or two on here are better at wording things than me that's all

    i''m better at the physcical, and mental and runnig and nutrician side of things, but even then i have trouble wording it

    Wishing you plenty of of positive vibes and you winning

    Mick  ( phil says hi )   xxx

  • Aww MicknPhil .. that's really heart warming .. thank you so much for your kind words .. image

     I am sorry to hear that ill health is plaguing your family .. long term ill health is very hard to deal with .. we can all manage to cope with pain or fatigue, general ill health for a short while .. but when it turns into a long term illness then slowly little by little it can drag you down ..  even a small pain seems impossible to cope with ... because it never ends .. it's always there .. day after day .. and if folks haven't had to deal with never ending ill health then they simply don't understand the mental fatigue that goes along with it ..

     When people ask me what it's like having fibro I usually ask them if they have had 'flu .. proper influenza .. not the sniffles or a common cold but 'flu .. because that's my life .. that's how fibro makes me feel every day .. every week .. every month .. lethargic, woolly headed, unable to think clearly, achey, sensitive all over and generally lousy .. and for anyone trying to imagine what their loved ones are going through during their long term illness I can only suggest they think back to when they were feeling really ill at some time .. and then imagine it going on for ever and ever ..

    Surprisingly that does seem to help a lot of folks to understand what having a long term illness does to the sufferer .. image

     Heheheh .. and most long term unhealthy people would be scared to death if they woke up feeling bright and vigorous .. full of energy .. mind racing at a mile a second .. yikes .. I'd probably think I was ill image hahahahha

     Gentle huggles, for anyone feeling ill today .. image

  • Hi Patootie,

    Hope you  had a great Christmas.

    Small steps hun - you can do it!

  • Keep on keeping on.
  • Have just found this thread...

    Wanted to wish you all the very best for 2008 Patootie - you sound like a very determined lady, and surely that's half the battle isn't it?  Keep goin', you're doing great! image

    I thought about something I'd seen in a catalogue.  It's basically a kind of 'mini-bike' that you can use whilst seated.  I might have even seen one in Tesco's.  If I find anything I'll post a link.

  • This is the type of thing I was thinking of:


    You could always check with your GP or physio (?) to ask if it's suitable.

  • Patootie, wishing you all the very best for 2008. I was wondering if you could manage an exercise ball if you had a bar or something to hold on to while you sat on it?

    Keep on keeping on.

    Mick, others may have better grammar or spelling, but not your insights, so what you say and post is really valuable.

  • Sorry I haven't been in the forum for a few days .. I had a nice quiet Christmas .. watched some movies I had recorded earlier this year (in full expectation of the TV being awful over Christmas .. and it was, wasn't it ) .. had some lovely cheeses .. a few drinks .. and generally pottered ... image

     Thanks for the 'bike' idea .. I have  tried one of these .. if the pedals were powered and went round on their own it would be great .. I could strap my feet in and just let the 'bike' do the moving of my legs for me .. but I'm afraid it's the old 'fibro' problem of my brain sending the 'wrong' signals again .. any exercise that I do for myself gets 'jumbled signals' and the muscles either overwork or just don't work in the right directions ... passive exercise though is very good .. that way my brain doesn't send any signals and the nmuscles actually work properly ..

     I shall try this wobbleator (vibrating platform) thing in the New Year .. see if that works for me .. a friend has one I can borrow for a few days .. if it works I will get one .. I've seen them on offer for just over £100 .. obviously that's a very basic machine .. but I don't care if it hasn't got all the infinitely programmable electronic wizardry that  calculates to the Nth degree calories used or whatever .. I just want the wobbleator part ..

     Have a wonderful New Year everyone .. and a very happy, prosperous and fit 2008 image

  • Sounds lovely Patootie, you are dead right about the telly.

    I enjoyed Ballet Shoes and Oliver Twist (although is wasn't Dickens) the rest was a big yawn - thank goodness for a day a the theatre on Friday!

    Have a good New Year and good luck with the "Wobbleator" I'm told they're very effective. image 

  • Happy New Year everyone .. image  Okay .. so I'm a little late with my greeting  .. but in my 'fibro' world it could have been today, yesterday or even tomorrow image

     Anyway .. todays the day .. I get the loan of the 'wobbleator' .. I did try it out at my friends house .. and NO nasty aches or pains .. which is a flippin' miracle .. so I shall 'give it a go' .. even if it doesn't 'do anything' on the 'physical' side  .. what I have found is that it makes me laugh .. standing on that plate with it zipping from side to side and my whole body wobbling around with it is just soooo funny .. and we all know that a good laugh gets the 'nice' endorphins working overtime .. and they help reduce pain .. so on the 'mental' side .. it can do no harm .. only good ..

     Obviously I shall take it easy to start with .. the timer goes from a very modest 30 secs which I dare say isn't enough to really do anything .. but better that than start with 2 minutes and be in agony the next day .. I shall try and build up to 3 minutes over the next 10-14 days or so .. and then see how I get on ..

     Did anyone watch the programme called 'Half Ton Mum' on Channel 4 a few days ago  .. image ohh my .. that's quite sobering to see someone who weighs 64 stone .. even I feel like a cat walk model in comparison .. and during the programme it said that over 2 MILLION Americans weigh over FORTY stone .. 2 million .. 40 stone .. yikes .. blimey ... they briefly showed a guy who weighed almost 80 stone being cut out of his home by firemen.. honestly it made me cry image.. it is just so sad to see folk be like that .. it was just awful .. they had to use forklifts to manouvre him and big trucks just to get him to hospital  .. I hate to say this .. but can't think of any other comparison .. he was just a big lump of 'blubber' with a tiny head poking out of the top ..

    I think the image of those men trying to push and shove his 'floppy blubbery body' around will keep me eating healthier for the whole of this year .. image

  • happy new year patootie. you have willpower, which means you are halfway there already.

    you may only be going at snail's pace but as mick says, snail's pace is better than no pace at all.

    best of luck in everything you do and keep at it!

  • Good Luck Patootie - friends and laughter are always a good mix to make you feel good, I admire your determination and guts, keep at it girl! I look forward to the funny stories of the 'wobbleator'!

    I watched the half ton mum and I cried when she died, terrible condition to be in, she must have been terribly unhappy.

    wishing you a healthier 2008!
  • Glad you're having fun with the new machine - wobble on Patootie! image
  • jjjjuusssstttt dddiiidddd 2222 mmiinnnuuutteeesss ooonnn tthhheee wwoobblleerr ... ggiiggggllleeesss ... eeeevveeennn mmmyyy eeyyeeebbbaaallllsss wwweeeerreee vvvviibbbrraaattting ..... hahahahahhaahahahahahahahhaa
  • LOL image
  • Great to hear that you've managed 2 minutes, and it certainly sounds as though it raises your spirits!

    Keep on wobbling.

  • Hi pattootie, just checking in to how you are doing.  having great fun by the sound of it image Keep it up, your determination is inspiring!  it's all down to attitude in the end - if you think you can you will!  wishing you all the best for the new year.
  • image

    keep going

    Stay on this thread though


  • 2222 minutes, crikey, respect;O)
  • Hiya Patootie, well done on your wobbleator (sp?) session!  image
  • Sigh .. I shouldn't have done the second 2 minutes just before going to bed .. (giggles at Dustboy .. hahahah I wish I could do that long !!!) ... had cramps in my feet and lower legs on and off through the night ..

     So .. I will start again .. 1 minute maximum .. when I get up .. and in the early evening .. NO more before bed .. it's so frustrating having to be uber sensible .. image

  • small steps patootie.  they will be big steps in time.

    well done for keeping up with it.

  • patootie,

     I suffers severe head injuries and multiple fractures in a climbing accident before I started running.

    Have a look at My Philosophy on recovery. The name of my website says what others have said.. a step at a time.

    I put this website together while recovering from the accdent and unable to work.  I realise that this is not in the same league as your challenges but it my give you some more inspiration and the philosophy appiles to anyone and anything.


  • Ohh myy goodness Colin .. I've just spent the last 30 minutes reading your website .. what a terrible time you had .. and how lucky you were to 'escape' with 'so few' injuries .. sigh .. it could have been so much, much worse .. yet in itself they were terrible imjuries and as calamitous to your previous life style as it's possible to be .. you have achieved so much in such a short time .. congratulations .. !!

     Some things I read made me groan inwardly (yes, of course you shouldn't have been drinking before climbing .. but just maybe it 'saved' your life ... because you were slightly more relaxed due to the after effects of the drink .. who knows!)  .. some made me smile wryly .. and many times I was nodding vigorously .. yes yes .. I know that feeling .. you gave an excellent description of the foggy feelings .. and in a small way I know how you felt with the dratted 'cotton wool fog'  .. as it sounds a very similar experience to my 'fibro fog'  .. yet of course for completely differing reasons ..

     The concentration problems are really frustrating aren't they .. and it's almost impossible to explain to anyone how 'unbearable' the most bizarre things can seem to be .. repeated sounds .. and sounds at certain audio levels can soon drive me to distraction and I keep a set of those 'soft squishy' ear plug thingies ready for the cacophany of lawn mowers that roar through many a summers day ..  

     Oh dear .. I'm not writing this very well .. I'm certainly NOT likening my problems to your problems ... in the main I just have an overabundance  of Substance P* in my brain .. you had a major accident .. you set out a a fast pace back to recovery .. I simply sat back for years and years and 'allowed' myself to slide down the somewhat greasy slope to an 'all enveloping' disability ... we are at completely opposite ends of the scale .. 

    I just wish I could 'tackle' my disability in similar style as you have done .. but whenever I have tried a  flippin' great big Monty Pythonesque 'Godlike' foot comes and stomps on me all over again .. sends me back to square one with ever more and more medical problems ..

     Colin you are an inspiration .. thank you for taking the time and trouble to post .. I appreciate it .. and it's very humbling to 'speak with' someone who has made real life changes after terrible events .. it makes me feel rather 'pathetic' admittedly ..  but it's a much needed gentle 'kick up the rear' .. I got myself into this 'disgraceful mess' of a lifestyle .. now I am the only one who can do something to get myself back out again ..  folk like yourself make me feel even more determined to do something .. anything .. to feel a bit more alive and 'with it' ..

    *Substance P is a chemical substance in the brain. It is a neurotransmitter that essentially works as a pain messenger. Excess levels of substance P can cause pain signals to be sent to the brain even when there is no reason for such a signal to be sent, i.e. no injury or illness that might cause pain.

    What is the significance of substance P for those with fibromyalgia? In fibromyalgia patients substance P has been found exist in abnormally high levels, and, consequently, may account for the persistent and chronic pain

  • Hi Patootie!
    Just read through your post and I am so amazed and impressed! You're a strong lady - well done! Wishing you a fabulous 2008, and I'm looking forward to reading of your achievements here!

  • Colin

    very well done friend, i've not read it yet, simply don't have time to sit and concentrate right now, it'll have to be when my wife is at college - but i have it on my favourites

    Pattotie  -  hope you are ok

    BTW, this business of Small steps, which will in time become real BIG steps, in fact masterful steps in my opinion, sounds REAL GOOD to me !!

  • How's it going Patootie?
  • patootie,

    I am glad that my I struck some chords with some of my descriptions, have have also done presentations to Headway groups and seen the same nodding heads when I decribe how things feel.  I think brain injury survivors do not often hear from someone who has been where they are and made a full(ish) recovery, instead of hearing views from medical staff.

    I also found noise, mainly people speaking, to be very tiring.  Luckily I was at home for most of the time on my own, not children, pets and Janet (partner) was at work during the day.

    I agree our circumstances are very different, yours has been a gradual creeping change, mine was more dramatic.  So I reversed that and made a dramatic return to health, that took 5 years though!  I think you have a big task in front of you but I think you are doing the right thing, small steps and all that.  You will be able to take a trip to the next village and not suffer for it after.

    If you just tackle a small step, at a time, then another, then another and don't be distracted by the big picture you will suprise your self in how far you get.

    I was determined to not be classed as disabled, so even in hospital refused to get in a wheelchair except on one occasion when I had to got down 2 floors in hospital and I was too wobbly and week to negotiate the staircases.  Now I do not regard a marathon as being a long run....

    Everyone has their own 'marathon' to run although it may not be a marathon and may not even involve running.  Everyone can achieve more than they think they can by taking a small step towards their objective at a time.


  • Mick n Phil,

    I think I saw you at the Pewsey Marathon in August 2007...  what do I mean, of course I saw you, unless it was someone else with a wheelchair, unlikely.

    You pair are inspirational as well, although I was not aware of you until a couple of years ago.

    Everyone should try the 'A Journey of a 1000 miles starts with a single step' philosophy.


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