Disabled and desperate

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 ..

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.

Colin

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

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 !!

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.

Colin

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.

Colin

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 ...

 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

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 ..

 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 ..  

 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.

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.

Keep on with your Journey of Recovery

Colin

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

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 ..

 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) ..

 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 ..

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 ..

Great post Patootie

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.