Disabled and desperate

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

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!     Long may it continue!  As Colin (I think!) said, just be careful to take it steady and not overdo things.

Hi Patootie

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

Micknphil - what you do is brilliant! - you over took me at the Stevenage half last Nov  ......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'

 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

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  

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 ay

you can't get rid of us patootie!

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

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 injury)

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.  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?

Colin

'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

Well said micknphil  

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.

Colin

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 more)

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.

Colin

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

 Fibromyalgia list of commonly known symptoms

PHYSIOLOGICAL PROBLEMS:
__ 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

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

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

OTHER NERVOUS SYSTEM PROBLEMS:
__ 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!