Disabled and desperate



  • 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.

    Well said Colin.

  • Been to the docs this morning for a routine check up ... I have good news .. better news .. and great news ... image

     The good news is that I have sent off for my very own wobbleator .. bought it in an online sale .. other than the first night when I got spasms in my legs .. I have had no problems using the borrowed wobbleator ... and even though I don't feel as if it's doing anything much .. I know it must be good for my muscles as these home  'wobblers' are direct descendents of the NASA machines that they use to keep astronauts who are on the space lab for months on end in shape .. and to send something up into space costs a fortune so they wouldn't send anything not giving 100% performance levels  would they ..

     The better news is that my cholesterol is even lower than it was 2 months ago .. 3.2 today .. was 3.6 a couple of months ago .. (generally under 5 is the desired level) .. just got to wait now for my liver function test results to come back .. we know it's not working properly but it is slowly getting healthier .. and in actual fact my liver tests are better today than they were 12 years ago when I was much fitter and considerable slimmer .. so pound for pound my liver is in better condition now than it was then hehehe

     And the great news is .. wait for it .. fanfare .. long drum roll .. ra ta tat tat .. ra ta tat tat ... I've lost a few kilos since just before Christmas image

    I think my baby steps just got a big grown ups stride added ... but .. of course .. there is a long way to go .. many, many ,many more steps to take .. and I dare say there'll be more than a few sideways steps and several backwards steps still to come .. but at least I am now pointing in the right direction .. image

     Ohh yes .. and this morning I went to the village docs on my scooter .. then came home to change my top (the nice nursey had the devils own job to find my vein .. then when she did it wouldn't stop bleeding heheh) .. then went straight back out to do my banking, go to the chemist, and visit a friend .. so that's a big 8/10 for being active today ..  image

     Now I shall go and do some housework .. while I have the energy hahahah

  • You're sounding very positive which is good in any case.

    Wobbleator; if you have similar balance coordination problems to those that I had, then just trying to stand on the wobble board is going to be impoving you muscle and tendons. As well as you balance.  I never did get the hang on it properly.

    cholesterol; I am jealous of you cholesterol level, I had mine checked a year ago and it was 5.8, not something I would have expected.image

    steps; Just a  word of caution, in your euphoria about achieving alot in a relativley short time, don't try taking too big a step.  Keep them small and achievable, that way you will always be going forward.  Congratulations on loosing weight over Christmas, which is it opposite of what most people do.image

    Keep on with your Journey of Recovery


  • patootie - fab news all round.  keep up the good work but don't overexert yourself.  and enjoy the wobbleator - it sounds like fun!

    colin - your story and determination amazes me.  wise words from you as noted by screamapillar. 

    mick (and phil) - you continued to amaze me.  it was an honour to meet you at luton '06.  may you continue to enjoy your running journey.

  • Great news Patootie image

    Keep wobbling hun!

  • Wobbelator .. I think the 'science' behind these vibrating platforms is that they encourage the muscles to work by moving the platform you stand on minute amounts to and fro sideways .. so your muscles are constantly having to minutely 'correct' your balance .. and if my sense of 'feel' is correct then when I get off I can 'feel' that my muscles have minutely lengthened .. which makes them more 'pliable' less prone to injury and fatigue etc etc .. It will take a long time to get fit I know .. but if I can keep on using this 'passive' exercise I can shorten the time no end .. or at least make it achievable in my lifetime hahahah .. and of course passive exercise means I don't get the awful pain sensations and utter fatigue that doing activities always gives me .. image

     Cholesterol .. my cholesterol always has tested in the low 3's to high 4's .. well at least the last 25 years or so .. .. I may be a 'large' lady but I don't eat much fatty food .. I don't eat cakes, sweets, puddings, chocolate (nice smell but doesn't taste half as nice as it smells) .. etc .. and I don't like animal fat .. and usually prefer the non fat variety of foods to the fattier versions .. in fact .. a number of times I have been 'told off' medically because I don't have enough fats in my diet (that's the good fats of course) .. image

     Steps .. yes of course .. small steps .. it can only ever be small steps or I know I'll fall flat on my face and not have the heart to get back up and try again .. but today .. it was '3' good baby steps all together .. that's a 'giants' stride for me .. and I think one now and then is allowable .. image

    The 'over Christmas' weight loss wasn't exactly planned or expected .. I had more than enough of the things I enjoy .. a few glasses of a deliciously aged single malt whisky .. some extra nice cheeses .. but like I say .. I don't eat the cake, pudding, chocs etc and I kept my portion sizes 'normal' .. so even though I had some nice foods I didn't gorge .. digestion is too sluggish (more fibro probs of course) .. to eat 'heartily' and not feel bad afterwards ..

     As for sounding positive .. well I think that's down to all you wonderful people .. because when I started reading the various threads in the Runners World Forum .. I felt a tingling of .. of .. hmm .. how can I describe it .. a tingling sensation of .. 'all your enthusiasm' ... there seemed to be 'waves of encouragement' just leaping out at me .. with a background hum of .. 'you can do it' .. 'give it a go' .. 'we're here to help' .. all buzzing around me .. it was very weird .. it kind of 'filled me up' and made me want to try .. feelings I had thought were long gone and given up on ..

     And it's here all the time .. a definite feeling of 'silent encouragement' .. ohh bother I just can't explain it .. but it's like a massed chorus of people all speaking to me at once and saying .. how are you today .. good .. well done .. just 10 seconds more .. yes you can .. etc etc .. it completely lifts me up ... from the moment I get up to when I go to bed and reflect on the positive things I have done that day instead of all the negative things as I did before ..

    And now you'll all think I'm 'potty' as well .. but honestly the feeling wasn't there before I visited the forum that first time .. image

  • tweety been and ate all my pies !!
  • Great post Patootie image

    I'm really glad you came across the forum, sounds like support and encouragement were sadly lacking before. It isn't always easy to know where to find it.

    As the only runner among my friends and colleagues, I'd never be able to share any of the ups and downs without some of the threads on this site. I'd certainly have struggled with training for my first marathon without knowing there were others on here going through the same experience.

  • <offers micknphil a pie of their choice>

    patootie, i remember finding these forums very welcoming when i first ventured here many moons ago.  i have other runners at work, but they are all seasoned marathon runners, one of which ran London 05 in under 3 hours, something i can categorically state will never happen with me!

    may you continue to be inspired on a daily basis.

  • patootie

    may i say...

    i do so agree with Screama pilllar & Tweety

    For those who don't know me, i have vast experience in long distance road running,

    ( only difference is, now-a-days i take Phillip with me in his wheelchair )

     but i also have severe problems at home due to my wife's and son's disability.. and i find these forums pure magic, they have helped me no-end , long may it all continue to help you !!

  • micknphil,

    I've just looked at you website, an impressive array of marathons and halves for you two together.

    Although I noticed that the Pewesy Half is not on there from last year, so maybe it wasn't you I saw there?


  • Colin

     yes mate, we did them all, it's just my mate maintains my website, so i have to e mail him to up date it

     hope you good !!

  • So pleased to hear of your successes Patootie!   image  Long may it continue!  As Colin (I think!) said, just be careful to take it steady and not overdo things.

  • Great site Micknphil!  What an impressive list of races!  Found your story moving and inspirational.  Good luck to you both.  Are you doing Sheffield half this year?  If so I'll look out for you.  You're much much faster than me though image
  • Just took a quick look at Colin's site too (will look again when have more time).  Another brilliant site and set of achievements image.
  • Hi Patootie

    Lovely to hear you are making progess - those "baby" step add up and you'll get there in the end. image

    Micknphil - what you do is brilliant! - you over took me at the Stevenage half last Nov image ......and I wasn't pushing a chair.

    Will check out Colin site when i have a bit more time, got packing to do, off to Arizona to run a marathon.

    Will be thinking of you all when I'm running round as your determination to suceed in spite of everything is inspiring.

  • hope you're doing ok today patootie (and the rest of the patootie support crew!)

    mick - have you nicked my pies? (lol)

    tweetyateallthepies wrote (see)

    hope you're doing ok today patootie (and the rest of the patootie support crew!)

    mick - have you nicked my pies? (lol)

    Drat just wrote a LOOONG post and then lost it somehow ... I'll try again ...

     Now that's a first .. 'The patootie Support Crew' image

     I didn't know whether to laugh or cry when I read that ... laugh because it's 'silly' .. or cry because sadly it's true I don't get any support .. everything I do is just me, me and me again ..  I'm middle aged, single and have to be independent whether I like it .. or not ..

    .. takes a swipe at the violin player go'way .. flippin just popped up from nowhere image

    I think I must have been at one of those 'life's crisis' points when I found Runners World .. ready to scream my anger at the world and all the injustices .. and my old faithful Black Dog panting in my ear ..

    But from the very first day I came in here I did a complete 180 .. and instead of heading down, down, down  .. I am struggling my way slowly back up again .. and Black Dog has gone off to run several back to back marathons  image

    I really do appreciate everyone who has read this thread and posted .. it has made a tremendous difference .. I'm not quite sure I can explain it .. even to myself .. but 'support' was the one thing I instantly got a lot of .. and I guess I really needed it .. and will need it for a long time .. so please don't 'go away' .. yet

    And thank you to those folks who have shared their own life crises (yes that really is the plural of crisis even though it looks a bit odd) .. because in sharing their 'life events' it's put a lot of things into perspective for me ..

     So .. welcome one and all to 'The patootie* Support Club' (*and any others who may need a bit of support) ... come on in .. pull up a pew .. and let's get supporting each other .. ohh .. but I bagsy first hugs from all the new comers .. there is nothing so spirit lifting as a good huggle now and then .. and I rarely get the chance for one these days .. flippin' norah the violin player is back .. ohh well he'd better give me a hug and play me a nice tune .. altogther now ... Ta rah rah Boom dee ayimage

  • you can't get rid of us patootie!

    i too have had fab support on here.  there's nowhere like it image

  • I think there is alot to one's mental state which affects how things are approached.

    I never regarded myself as being 'ill' or having to do anything more than recover.  That recovery may seemed remarkable to people who saw me in intensive care, but I have no recollection from  a week before the accident to about 3-4 weeks afterwards, so I never saw myself like that, broken and stiched/stapled together. ( one of the 'benefits' of head injuryimage)

    It would have been easy for me to sit back and let the 'cotton wool wrapper' envelop me, but  I have always done things the hard way.image  You will need to fight to stop the all enveloping feeling of fatigue, and this is something that essentially has to come from within and you own self belief. The  encouragement of others, family, friend, RW, etc will all help, but you must believe that you can do it.  You have made the inital moves out of your 'cotton wool' which is a huge effort in itself.

    Now I am in a position of having run over 10 ultras and marathons and in the summer I regularly cycle a 50-70 mile round trip to work, from 5 years ago when I couldn't even keep up with my 4 year old neice on a walk around the park!

    So it is all possible, do not have a doubt that you can do it.  I believe that you will.

    Can you get the violin to play any cheerful folk music?  Ian Anderson of Jethro Tull hops about on while playing.  That's a much better sound track to have in you mind, or Jazz?


  • 'Fraid the 'cotton wool' brain is a permanent ongoing thing .. it's just one of the more persistent of fibro's symptoms ..

     hmmm ... maybe I should copy and paste the main fibro symptoms so you understand better what I am talking about ..

     Are we allowed to do things like that .. it's quite a long list .. 63 items long ... or will I get into 'trouble' for posting it ??

  • patootie

     you won't get rid of us like that, we as far as i see it, are  all here to help one another

  • You have a great sense of humour Patootie, I'm sure that must really help.

    And you're entiled to first hugs from newcomers - it is your thread image

    Well said micknphil image 

  • patootie,

    a list would be good, I only have a rough idea of your problem but only where I have been able to relate it back to the feelings I had from brain injury, which in my case were only transient (5 years).

    You can always do a couple of consecutive postings.

    or we could just look at this site..fibromyalgia, I'll look now.


  • hmm... well I did expriance some of those symtoms from my head injury but with little pain, which is a huge difference, I did have pain but only in the injured areas.  I know from previous experience how draining constant pain can be ( previous experience being :3 fractured vertebae, 2 broken rib broken leg, collapsed lung and bruised liver in another climbing accident, I don't climb any moreimage)

    I was interested to see about the Temporomandibular Joint Dysfunction Syndrome and the fact that in most cases it's related to ligament/muscle around the joint.  Again without pain, I had, still have to a  very minor level, problems with speaking clearly and having a 'numbness' around my lower face and jaw, espeically when it's cold outside.

    I am now alot more aware of your problems mine pale into insignificance alongside them, especially as mine were self inflicted.


  • Ok ... here it is ...the accepted UK** Fibromyalgia Syndrome symptoms list .. ** the full American list runs to over 120 known symptoms .. realistically you get a 'selection' of the various symptoms every day .. the symptoms can stay for a while or come and go in a few hours .. but generally as one disappears another comes to take it's place .. the 'flu like feeling is generally present most of the time .. so if you think back to whenever you have had a severe virus or proper 'flu .. well I can feel like that pretty much all the time .. thus far today .. I was disorientated when I got up (spatial disorientation) .. just after breakfast my skin was very itchy (rashes and itching) .. I've got a mouthful of ulcers and a lip full of cold sores (last two weeks) .. and this afternoon my eyes are dry and sore so I'm having to use eye drops ..  I wonder what this evening will bring image

     Fibromyalgia list of commonly known symptoms

    __ recurrent flu-like illness
    __ recurrent sore throats, red and injected
    __ painful lymph nodes under the arms and neck
    __ muscle and joint aches with tender and trigger points - up to 18 of them
    __ night sweats and fever
    __ severe nasal and other allergies
    __ irritable bowel syndrome (IBS)
    __ weight change - usually gain
    __ heart palpitations
    __ mitral valve prolapse
    __ severe PMS
    __ yeast infections
    __ rashes and itching
    __ uncomfortable or frequent urination
    __ interstitial bladder cystitis
    __ chest pains (non-cardiac)
    __ temporomandibular joint dysfunction (in the jaw)
    __ hair loss
    __ carpal tunnel syndrome
    __ cold hands and feet
    __ dry eyes and mouth
    __ severe and debilitating fatigue
    __ widespread pain
    __ other chronic illness(es) usually present (like diabetes, hypoglycemia, asthma, lupus, ms, etc.)
    __ numbness in the limbs, not painful like pins & needles
    __ painful swelling in the hands, legs, feet, neck
    __ GERDs (gastro-esophageal reflux disorder)
    __ "growing pains" start in childhood and teens, continue into adulthood
    __ widespread body pain during/after physical exertion

    __ attention deficit disorder
    __ spatial disorientation
    __ calculation difficulties
    __ memory disturbance
    __ communication difficulties (problems speaking, confusing words)

    __ depression
    __ anxiety and panic attacks
    __ personality changes, usually for the worse
    __ emotional lability (mood swings)

    __ sleep disturbances
    __ headaches
    __ changes in visual acuity
    __ numb or tingling feelings
    __ burning sensations
    __ light headedness
    __ feeling 'spaced out'
    __ desequilibrium
    __ frequent unusual nightmares and disturbing dreams
    __ tinnitus (ringing in the ears)
    __ difficulty in moving your tongue to speak
    __ severe muscle weakness
    __ susceptibility to muscle, tendon, ligament injury
    __ intolerance to bright lights
    __ intolerance to alcohol
    __ intolerance to sound
    __ extreme sensitivity to medications and their side-effects
    __ alteration of taste, smell, and hearing
    __ insomnia
    __ inability to achieve stage 4 restorative sleep
    __ morning stiffness in the muscles and joints
    __ restless leg syndrome
    __ muscle spasms
    __ muscle quakiness and shivering during/after activity or exercise
    __ sleep paralysis (related to stage 4 sleep deprivation)

  • Hello patootie,

    I am a friend of MicknPhil's and Plodding Hippo. Well done on the wobble board thingy. I think you are a inspiration too all of us.

    My life is a tiny bit like MicknPhil's, as in that my son Andre has learning difficulties and is not aware of danger and does not sleep well.

  • <waves to tracey> - mini tweety has been referred to child psychiatry to assess for a diagnosis of autism spectrum disorder as the paediatrician agreed with me (i'm not going mad after all, ha ha!)

    yikes, that is a hell of a list patootie.  i can't even begin to emphatise.  makes my migraines look teeny in comparison.  i had flu once about a year ago and it was awful.  can't imagine being like that every day.

    keep up the good work; you sound like you are enjoying the wobbley thing!

  • I've been telling you all for years that I'm ill!  Now do you believe me image
  • tweetyateallthepies wrote (see)

    yikes, that is a hell of a list patootie.  i can't even begin to emphatise.  makes my migraines look teeny in comparison.  i had flu once about a year ago and it was awful.  can't imagine being like that every day.

    You should see the American list .. they've got their symptoms up to just over 120 now .. mostly by splitting some symptoms into a 'main symptom' and then 'sub symptoms' .. but with additional things like ridges in the nails .. a propensity to dry split hair .. pimples (mainly on the body) inclined to become septic .. etc etc ...

    But, I feel I have more than enough symptoms with just the UK list .. and the only symptom I haven't experienced (yet) .. on the list is 'mitral valve prolapse' .. the chest pain is a bit scary .. it's actually caused by inflammation in the ligament between the sternum and ribs (and very occasionally between ribs and spine) .. so everytime you breathe it's really painful .. it can appear to others as if you are having a heart attack .. as the intensitiy of the pain causes a 'mimicry' of the symptoms of a heart attack .. you flush, have a cold sweat, clutch at your chest and generally stagger around a bit .. hehehe ... whilst you are trying to explain that it's just costochondria* .. and not a heart attack .. you find an ambulance has turned up and you get rushed off to hospital .. image

    By the time you get it all sorted out (and I now carry a card to say I get costochondria) .. you are miles away from home .. no way to get back other than pay for an astronomically expensive taxi .. and are completed fatigued .. with all the 'daily' symptoms of the fibro flaring out of control due to the stress ... image

    * I know it's 'just' costochondria if 2 paracetamol ease the pain inside 10 minutes .. if I get no relief from 2 paracetamol (and this is exactly what my doc said) .. with no relief .. panic and get yourself rushed to hospital because it IS a heart attack .. image

    And guess what ...  I was sitting here about 15 minutes ago thinking how cold I was feeling .. I thought I must be coming down with this flippin' virus that's buzzing round the village .. so went into the kitchen to make a nice hot cup of coffee to warm myself up up a bit .. while waiting for the kettle I decided I'd better get an extra fleece and put on ..

    .. as I went past the central heating thermostat in the hallway I glanced at it .. as you do .. and was brought to an abrupt standstill by seeing it was only 11 degrees .. YIKES .. ohhh nooo .. my heating must have broken .. so I fiddled with the electronic gizmo thingy whatjamacall it to see if I could 'force' it to come on .. when the realisation dawned on me that I hadn't even turned on the heating this morning .. 

    I am now glad to say that with one extra fleece, one cup of coffee and 15 minutes of heating .. I am feeling nice and warm and cosy again .. fancy flippin' forgetting my heating ..

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