as i wrote it down, i wondered if there was such a context. There is:

past tense: demoralised; past participle: demoralised
cause (someone) to lose confidence or hope.
“the General Strike had demoralized the trade unions”
That is how TODAY feels.
Sometimes the mundane day to day issues that i can no longer do, are what deflates me and they, to compound the feeling of worthlessness, are invisible.
i try NOT to get annoyed with my brain and the chiari that rules my life:
  • my time,
  • my efforts,
  • my time awake,
  • my pain levels,
  • my need to sleep
  • my lack of social time
  • my “new” timetable – the one where day starts about 11+/-  involves a nap mid afternoon, and on a good day allows me the vigorous exertion of some “active thinking” .


THIS is how all of the above negativity LOOKS.
As this bloody awful brain is on the inside.
It is now 1.50 and i have MANAGED to do this
drank the cuppas my OH brought me
(felt the auto-shame of being cared for)
Sat down and did my make up
didn’t skimp on it.
my appearance standards matter to me.
i DO my best.
But i was too tired today, to choose a dress out of the wardrobe, as that would have needed my legs to go there, and my brain to help me decide and my body to co-operate and poke through the rails….MULTITASKING s it would be. 
Today i wore one, not yet put away.
CLEAN – of course.
I have standards.
TODAY i feel pissed off with my NEW life.
The one very few know about.
Cancelled my Occupational Therapist – as am feeling that I am NOT improving in my challenges. I am failing. I am also realising that the mental energy i put into PLANNING even my music, cancels the ability to do my walk challenge. So i use it as an alternative.
THOUGHT (productive) replaces the 4-minute-walk challenge.
how demoralising is that?
I made a comment online about picking up a shop voucher in town:
“I’ll pick it up net time i am in town”.
in reality i  am never casually in TOWN.
that would be a morning thing,
a social thing,
an impromptu idea.
i don’t HAVE any of those – those are during my SLEEPING time.
am ANGRY with this lack of REALITY i have.
where THOUGHT trades off as exertion
where walking must be avoided if later i need to go watch a football match.
what life is this?
the fact that i live in a brain where having your FINGER nails gelled AND a luxury PEDICURE will be an exhausting experience, and i will probably fall asleep.
USELESS  defeat

One comment

  1. Oh sweetheart……I know how this feels. I went from a successful career, studying and never being still, to being bedbound with a damaged spine. I couldn’t even roll over by myself. After I had the surgery, it took a good two years to walk rather than shuffle/slide my feet. On top of Fibromyalgia, it was a real struggle.
    I can’t pretend it will all be ok. I can’t tell you I never feel as you do now, but I can tell you it does get better. It’s not that you get over it, more the case that you get used to it. It’s not the same as acceptance. To my mind, if we accept it, we give in, and I refuse to give in. I am not my illness. I am not my disabilities. But by not giving in, you have to prepare for the fact that not giving in means you will have to fight. Take things a day at a time.
    I admire your feisty spirit, the fact that you look great, that you keep up with those things. That is a powerful force of energy within you that will take you a long way. So allow yourself these moments of defeat. You are human. But keep on, keeping on, and that 4 minutes will be achieved one day. Then you’ll be aiming for 5 🙂

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