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Update from yesterdays semi productive day. Well its payoff day for yesterday yep day layed in bed.....sounds great but being in pain was not so good. Found it hard to stand and tried to get up only for my left leg to give way. Then noticed bruising on left side of chest , think I must have banged it ( cant remember exactly how at moment) thats one problem of having limited skin sensation on left side. Altoughgood thing is it doesnt hurt unless I really press on it so easy solution...dont press. Still would do it again and hopefullywill be ok by tommorow. Hope so as I am of to local football stadium for a game of botcha( think thats how its spelt) . Yep I'd never knew what it was either, its like boules only played sat down. Determind to go but dont want to return to using walking stick. Finally managed to stop using it about two years ago in time for my daughters wedding. So to finish on a positive ...yes I am in pain but I managed to achieve something and this pain will ease but my achievement will still be there.

18 Replies

Hi Paxo,

Ooops I overdid it again huh ? Sounds familiar !

The boules sounds fun : ) I still have my fold up stick that fits discreetly into my bag as insurance-there are times when I pull tendons or my legs are so fatigued that they keep going down like Groucho Marks which is really destabilizing ! I would rather walk safely with a stick if needed,temporarily than be unable to be mobile at all.I rarely use it but it is nice to know it's there !

Well,you have fixed the car and now hopefully your rest will fix your legs : )

We all make typing errors on here and I have to say your 'hissy git', ( presumably the male version of hissy fit ! ) in your last post did make me laugh : ))


Hi Angelite

Hope you are well and glad the typing error made you laugh( big fingers little keys!!!) . Plus my spelling isnt great anymore( you should see my txt messaging...a whole new language). The use of a stick was a challenge on my part ( stubournness my wife says). I had started to be dependant on it rather than just as a saftey net so to speak. I do get caught out without it and suddenly go crashing to the floor. I do use it if I know I will be stood/walking for a while but prefer at moment not to over rely on it. I do realise that eventually I will need to return to it but trying to prove consultants wrong. I was warned that I would be probably in a wheelchair by the time I reached the age I am now. So I do know the day will come. Plus the extra drive was like I said that my eldest daughter was getting married and I wanted to to walk her unaided down the aisle. In the end she virtually dragged me down as she raced to the alter ( to eager by far). Well since then I just think if I can just do one more winter without( cold weather aint good for me) the stick I'll be happy. So far so good!. The botcha is fun and we are in the process of trying to form a league so we can challenge other local groups. I would like to say that we are pretty good at it......and one day I hope I can say that...but not yet alas. Its run by our local Headway group with the help of the local football club ( think they need all the help they can get ) and is proving a success, with any luck we may get it considered as an olympic event, but till then we will just have to practice .... a lot.


Great motto Paxo & quite inspiring ; I think I might use it as a mantra for those 'pay-off' times.

So in future when I'm aching I shall be chanting :-

"Long after the pay-off pain has gone

The sense of achievement will carry on." :-/

XX ;-)


Cat: each time I overdo it I damage my joints more. OK to say the sense of achievement makes it worth it but in the long term I'm making myself MORE disabled and getting MORE pain/distorted joints. So NOT worth it, I think? Trouble is I CAN walk, I CAN carry heavy things but really shouldn't but NO choice, nobody to help.


I keep bashing myself, took trews off for shower and 3cm gash on left leg = hadn't felt it, did it on what and when = since shower day before. My skin tears SO easily now and numbness in various places and not noticing things, not being aware = get so many little injuries. Backs of my hands scarred from early on = still hurt/injure them but mostly now know to try be more careful eg on cardboard cereal packets, zips, under taps where I live are sharp = so many dangers but 'minor' so nobody cares.

They say home is the most dangerous place, where most accidents happen and yes: fallen down stairs twice and injured myself badly but shoulder/arm ignored recently and nerve damage and still pain months later (and loads of stumbles but only bruises and scrapes but now take SO long to heal, skin so fragile and odd). And deformed foot painful and other foot big toe joint and am sure right one toe joint distorting coz of how I move/walk = getting worse, all of it is. But NO info or help.

Told GPs early on numb bits and inside mouth, dentist drilled into inside mouth some years ago but didn't know til later coz couldn't feel it = blood after. But hedidn't TELL me what he'd done or say sorry. Why?

Used to bash my head LOADS = still do on cupboards if leave open and turn round to get something and forget/don't see. Early on hit it so much more and even a year+ ago had to ask friend to look scalp coz scab = must have bashed it but no idea on what or when. My body covered in scars now I never had before but no doc interested. Obvious I don't matter at all, feels SO bad.

Woke twice in night in mega stress/fear then at 5.30am WIDE awake, heart going, felt sick = scared of everything now, totally abandonned, NO info or care or choices. Stuck in 'home' I HATE, allergy to something chemical (floor/odours? STINKS), water bad for my skin and tastes odd, weird electrical 'signals' in one ear usually at a time. My mobs turn themselves on (or I forgot to turn off but pretty sure I DID and dates oftexts change by themselves.

Feels like my whole life has been hacked, I feel SO SO lost, alone, lost almost everything. DESPERATE for safety and security and PEACE and QUIET when I need it. Abandonned by all my friends/family, feel like I'm invisible and don't exist = a zombie that everyone avoids and doesn't hear or see. Am I in a coma, locked in and all this just in my mind not real at all? I don't FEEL real and aren't TREATED as real nor with respect. Told I exaggerate, been labelled a liar for SO long. My reality questioned by all = denied. So I question myself, lost my solid core of confidence. they've whittled it away for SO long = none left, lost me, who am I?

They say I'm mad, it's all in my mind - but that's where I (ME) is! And that's where we feel physical and psychological pain. IS my heart pain 'in my mind' ? It hurts. All mixed up, feel good for nothing = will be EXHAUSTED by appt. 11.40 today. HATE going to appts and can NEVER say what I want/need to, go into shock time and again. Need the RIGHT help, need them to ask the RIGHT questions = help me help them.

Bowed under and drowning in jobs can't do and papers and my notes. I try write things down (as told/must) but can't FIND or READ or USE. Feel SO rubbish and useless. Think smart phone not big enough to read and laptop can't find things, but better since friend (PV) told me to label carefully = derr = hadn't thought of that, I'm SO stupid. But forget what's where and what done/go/to = what's most URGENT? It ALL is and can't DO but try SO hard but in breakdown and NO help or even understanding.

SO sad: I could have (maybe) done clever interesting stuff. SICK of complaining but told to. Can't even write letters now = used to but now SO scrambled = wasted whole Sunday trying but FAILED = day down the drain. And no replies or ones that say ZILCH so what's the point?

I feel in utter pieces, useless, failure, so far from how I was. But no help even for the PTSD told had right at start, ZILCH, constant assessments then DUMPED. I need to talk about how all this feels but my terrible sadness at all I've lost denied and told what I feel is WRONG. Please help me somebody and NOT drugs or 'therapy that doesn't help or change anything. Am in bad bad way andwas feeling suicidal again last night, PITS of despair, NO hope, NO lightat end of tunnel, NO end to tunnel and going further down towatds centre of theearth = lost in oblivion. Can't cope at all but try put brave face on coz nobody wants to see/hear how I FEEL and psychs just givedrugs. HELP ME.


Hi muddled. I really feel for you. You are not stupid!!!!!!. I think that might look more like me.. (Tell you later).

It sounds to me like counselling might help. I know it helped me to deal with the loss of the me that I was. I didn't realise I was stuck in the grief process. it was neuro orthoptist ( I think) who told me to go and grieve.

Back to stupid I originally signed up to the headway forum about 1 and a1/2 years ago but have not been able to join in. This week the penny dropped turn the tablet round.

How's that for not having the brains I was born with?

But hey I did it and that is another success in my book.

I wish you all the very best in getting the help you need.


randomphantoms: thanks for taking the time to reply.

As usualI din't say half of what had planned to but did the best I could.

Never heard of neuro orthoptist! Thought neuro-opthalmology did it all? On really good days and when slept enough I don't feel so sad/low = I KNOW must do less but then the lists get longer and everyone telling me 'must move it along' = I'm too SLOW,not my fault. Too much criticism and not enough encouragement = we ALL need that. I try to encourage others coz know how good it feels and is helpful. But maybe I don't do it enough? Coz so drowning in trying sort all and SETTLE?

I know I am stupid, not my fault but am and HATE it/me like that, done my best to improve but keep sliding backwards = overload. Need do less and make it STAY, I think?

You say: It sounds to me like counselling might help. I know it helped me to deal with the loss of the me that I was. I didn't realise I was stuck in the grief process.

I cried lots at start and was SO scared by realising (then forgetting) all the things I suddenly couldn't do or understand WHY I couldn't = SO scary at start.I was SO lucky to have net and not so damaged that I could (sort of/bit) think what was wrong with me/brain. And yes, worked SO hard to try adapt and learn.

Today I did something dumb, the woman had typed my age and I said that isn't right. Was tired/muddled and suddenly couldn't remember how old I was,felt awful, felt stupid! Then at home still wasn't sure (dithering between 2 years) so had to write date born then year after = 1 then 10 years later = 11 and so on =my maths/numbers SO rubbish now = great loss coz was good at that, one of my strengths.

You: I originally signed up to the headway forum about 1 and a1/2 years ago

I signed up AGES ago, no idea when and one day (emptying emails) saw the email and realised I'd joined - or just been invited in email? Can't remember.

You: This week the penny dropped turn the tablet round.

Not sure what that means? I kept saying to social services here to TURN IT AROUND: make the problem into the solution, but keep forgetting ish. But my brain FRAZZLED with trying find solutions and FAIL. And the brain-burn/brain won't shut up I get is TERRIBLE, giving me extra problems/jobs at mo is SO bad for me but nobody listens or believes.

You: How's that for not having the brains I was born with?

We and others/environment/toxins make our brains - you're clever!

Still trying to see what my successes are, there are some but so many more failures and yes: I try to learn but fail.

Was SO frazzled/exhausted after appt. today = cold/shivery so ate more then bed but NO sleep: brain wouldn't stop and bad pain neck+. So up, took tab, maybe that worked or maybe SO tired (who knows) but slept TWO hours and feel much better now.

Then after had eaten = lightbulb flash = derr: I AM so stupid! 3 years ago was better at folders/filing than am now (shocking and scary but now = OVERLOAD) and I suddenly thought derr: SHOULD HAVE from start got separate folder for each subject and FILE things THAT day but when too stressed/overload = CAN'T think or do that. so a year later of RUBBISH at that = mAYBE I've learned (relearned yet again) something. I KNOW stress/overload makes me worse and worse since bad fever xmas 2012 BUT question is: what is my outlook, prognosis? VERY scared for future, maybe that's silly but maybe also realistic coz if another bad fever = worse again? Power ofAttorney stuff = SO scary, terrifying.

And keep trying to make my calendars/diaries work better but keep failing. I DO manage (I think) to get to appts (missed one coz too ill) so not too bad but I can't see/find did what when = need that clear and easy to find coz don't realise time passing.

Then realised ANOTHER thing (but will/maybe forget must learn over and over) that I can't for some reason make an appt. 2 or 3 months ahead. Tried to think WHY and not sure, maybe coz I think I might be dead? Maybe coz I just can't THINK or IMAGINE that far ahead, my brain just can't? Really don't know. Any ideas anyone or anyone else like me in this?

Unsure what appt. was for, feel very confused about most of them.

As usual get passed on/back = must redo? Must redo BETTER? Coz sent back to person who didn't ring me/follow up but I too apparently messed up (wastold off = unfair) coz lost list/instructions. Both of us bad? Try again, BOTH learn? Dunno. All too tricky for me. And people keep saying CHOICES but need proper/true info for that.

You: I wish you all the very best in getting the help you need.

Thanks. People keep saying I must help myself, I try SO hard to (and try help others when can) but keep failing andat mo (almost ALL the time) brain too stressed/overload to be able to think up anything half clever. But it tries = and that's when it BURNS so bad and won't stop. Need just ONE simple job at time before MORE piled on. And I need to not FAIL at everything coz lose heart. Too too long struggling with SO much.

So I have learned things today = AFTER a sleep. Need more sleep = can't coz of stress so I try remove stress but can't coz too much for me. My fault? Nope but am judged/blamed, not fair and not human.

Must remember how old I am or I'd really fail even the rubbish mini state exam!!!


Hi randomphantoms ( like the name ! )

Did you mean turn the tables round as in using your own problems/experience to help others ? x


hi angelite

thank you . The name came from the vary random things that my body/brain still do.

Sorry I must have been tired and got too involved in reading and replying yesterday. What I meant was bescaus I can't cope with the computer I use a tablet and it finally clicked that if it was in portrait shape I could get words into the book on the page.

I feel so good being able to hopefully make a positive contribution .


Wow,I got that spectacularly wrong ! Sorry,I thought it might be a typing error : )

I have heard of tablets-some kind of hand held computery thing ?Technology is not my strong point !

Great that you have joined and can share your knowledge with us : ) x


Well done for all your managing to do even if stubbornness takes it a bit too far at times! It's that determination without doubt that has taken your rehabilitation as far as it has. I also use a walking stick at times in the day when my balance fluctuates to not so good. I always use it if walking at night because I can't walk in the dark at all. I am a regular of the activity of 'splat'! I think you mean that you play Boccia. In my days of fostering I had a child who attended a special school and she used to play it. Prior to that I hadn't heard of the sport either.


A regular of the activity of 'splat' LOL !Perhaps we should make floor balance an Olympic event for us instead of the balance beam : ))


Yes I am sure we would be Gold winners! x


Well I think you are all amazing! How on earth I would cope? I have no idea! And hey I failed my practical driving test today by crashing into a roundabout! So there you go. Muddled please try not be so hard on yourself you're not mad! Any mental health worker would say it's a nuro problem so I hope you find the right help and support soon xx


razyheath43: thanks.

Amazing? Wow,not ME, but thanks, others here have struggled FAR more than me = and you???

You failed my practical driving test today? Oh, that's a shame, first time? It's when you fail LOADS of times, over and over (and never praised for effort or encouraged) get discouraged = all the best for next one.

And then can't remember or didn't know WHY failed or what did = can't know/think other ways to do = nightmare.

You: Muddled please try not be so hard on yourself you're not mad! Any mental health worker would say it's a nuro problem...

But this stuff makes me FEEL mad especially cut off from whole support network. But none of mental health HAVE said it's neuro (any of it) and now coz FEEL mad = ill psyche/heart broken = AM mad? And all this weirdness doesn't compute and oh, can't be possible can it MUST be me = the more probable answer = UNFAIR but that's what judges and insurers go on = risk (sick of that word too and the same 'magic wand' today YAWN and silly me thought if wrote letters = that's be magic wand but none good enough and now cam't even WRITE letters coz SO scrambled and don't know where to stop, where edges are = awful). And SO sad+. And neuros (and others) = if that's what they WERE, didn't examine or report honestly/properly. But who'd believe ME??? Nobody.

People keep saying they hope I find right help and support = do they/you MEAN it? Coz if anyone who COULD help me DID then I'd have been in far better head place YEARS ago. That HURTS. Can't undo the awful terrible times, not EVER, or get years back. Done my utmost to 'move on' (without help) but have failed. Awful.


Hugs to you muddled.and thanks I will have more lessons and try again! If I could come and help you I would! Headway are fantastic! You could try getting in touch with them,or reconnecting with them.feeling isolated is common,my hubby feels it two and has me! Oh and next time you have a medical appointment try writing down what you want to say or ask. I can only try to understand what you're going through x


Thx Razy. I DO try write down what say docs but I can't MAKE them do as should or answer questions. Tried loads ways nothing works = out of ideas and stamina. Stinks.


First off thanks for encouraging me to take second test I have 're booked.as for getting you're questions answered I know you feel alone you could take a friend or ask someone from headway t come with you? Just an idea


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