i will MISS the Parade. Am stuck.

is there a category for 2 and a half minute struggle in the special Olympics?

yes that is my BLACK humour.

my AIM and CHALLENGE set by my Occupational Therapist , without who i would feel completely lost and unsure what to do, was this. What i have nicknamed the two and a half minute struggle.

the 2 and a half minute struggle

to START, daily from my house.
to walk until a timer says 2 and a half minutes.
then to TURN – irrespective of where you are, and return home.
In a human this rehab would i suppose, :
  • build stamina.
  • build muscle
  • add distance gradually
  • gain speed on the homeward leg
  • it is NOT like this in a brain condition, where the overall control of my legs is from my brain.

After one week of this,

I have been SO good.
Doing it every day.
not ONE sign of it becoming easier, faster, building up.
On random days i almost can’t get my legs started at all.
On Saturday they were killer – weak and heavy…’twas as if i had started and had to WAIT for my LEGS to start independently. my BRAIN maybe didn’t send them the message.boring clothes
Today (after what could only be the emotional fatigue of dreading mother’s day -as was the last day last yr that mammy was well) i failed miserably on getting up and got down to sit about 2 oclock… up about 1.
Haven’t yet walked today cos i know am jelly legged.
i did, and it was just the same as other days when i felt lead legged/achy/flu-ish/meningitis flashbacks of the pains in my legs.
I am determined to try it, but am really not getting any sign of routine or of improvement.
oh and the lurch home is invariably slower and more heavy legged.
Haven’t been in town since.
i HAVE spent a lot of time organising.

I  put a huge amount of mental effort and thought into organising as much music as i did and could for the local club. At one level this is the cognitive level my brain DOES manage at, but i know i stupidly plough on forgetting that the trade off for a long period of planning/thinking/doing is mental complete fatigue. and that manifests as fatigue of EVERY level
  • mental fatigue
  • slurred speech
  • extreme tiredness
  • excessive leg pains and aches
  •  physical fatigue , and
  • emotional burnout.

This one i am NOT good at yet. I see the opportunity to do and i do. When it is something i still can do…

i did go to the parent teacher meeting for son2.
BUT i did, as my OT would advise) prepare in advance.
We shortlisted the teachers we need to see as the only CHOICES he needs to make.
My OH called the school in advance and they said i was to go to the TOP of each queue. and people were very good about it.
I HATED the whole event. I felt so conspicuous and so alone. I know that my OH, J felt awkward about it, as when he asked the people- it is OT easy to ask “sorry, my wife has a brain condition, and can’t stand. Is it okay if we jump the queue?”…meanwhile i would sitting in a chair nearby…and he would tend then, to fall into natural chat with the people he had asked to excuse us, and to leave me there and i sort GET that. i have NOT got a visible loss of limbs…but i DO have a virtual physical loss of the use of them to any considerable level.
He, nor they, noticed how isolated and exposed i felt…sitting in the middle of the hall. My son is autistic. He understood how uncomfortable i felt.Featured Image -- 7993
I went also for my MRI scan
I got halfway along the corridor of the hospital, when i realised i SHOULD not be walking this.
YES, i CAN walk just about that fay.
BUT my OT would wisely ask WHY? Why would i be using up the energy in a pointless part of the day, when i KNEW i had more to do.
She would call it bad planning.
After the scan, my OH had got a hospital wheelchair for me to use on the way out.
That helped.
I know tomorrow (St Patricks Day) if i went in for the Parade, then would n’t be able to stand.
My town haven’t seen me for the last year, and definitely not in a wheelchair.
They DO know i use my cane, Hazel ALL the time for balance and help
So i don’t go.
Would be a wheelchair and the effort of pushing through the crowds doesn’t appeal to me,
NOR has it even been mentioned.
in a nutshell, i have NO independent way of coping with the day.
I am definitely going to have to look somehow at mobility help. i KNOW i feel very strongly that iwheelythere wanted and really wanted NOT to look useless, so i wanted a self-propel wheelchair. And i have my MADGE.
BUT tomorrow, is a perfect example of why MADGE is not enough
i will NOT get to the parade.
Th annual town event.
ONCE a year.
Am stuck
without motorised wheels i am STUCK.
i am for the first time admittedly STUCK.
i REALLY would not like a big obtrusive upgrade to scooter  – as is a massive change for me.
BUT now i just can’t go anywhere without knowing my 12 yr old is pushing….and tomorrow, for instance, he is NOT free.
It socially will hold me further back.
i will not be in the crowd watching all the faces of the town.
not be part of the spectators buzz.
so last year i could blame recovery.
this year…NO…
this year am STUCK.
i will, “manage” to get down to the clubhouse for 5. To be sitting there.
That’s the smokescreen.
To be part of playing Irish music.
They will see me walk to the toilet and back.
otherwise the “shame” of my immobility, remains hidden at home. STUCK.


Helen 😦

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