i get angry and i get saddened when i hear versions of myself which do not do justice to the reality.
I get annoyed when people in conversation show that they have no idea how lilted my life is due to my health.
YET i play part in the problem as I don”t tell people the full picture when they ask
When i visit the GP and i know she is not listening to what i have to say as i have so many small, invisible complaints, that she is choosing one, or writing a bit, but is not really aware of the condition i HAVE…the condition i am IN…and the condition which governs me every day of my LIFE.
But what do i do? i get upset. and i choose there is no point in making another appointment….also well aware that my condition is lifelong, and that there is really very little SPACE in a GPs diary for chronic illness as opposed to acute things.
ALL of these combine to make me pissed off with ME.
i am a bolshy, outspoken, open person. If i do not change the things i contribute, the views i share with people, how can i blame them for the views they hold?
maybe am trying to shield people from the hassle of knowing?
maybe i like my GP too much.
but GOD i am TIRED.
so perhaps a diary…a diary not of life in the fast lane, not even of life in the slow lane…
life in MY lane…
my lane feels very lonely and very hidden from the rest of the world.
started wakeup calls at 10.30 – husband brought brekkie to me
an extra few minutes grace given as it is not easy to waken!
back to sleep.
husband brought up cuppa and woke me for REAL at about 11 oclock.
THIS time i wakened, drank my morning mik shake and cuppa
(with the bedhead lifted on the hydraulic lift to sit me up and make getting up easier)
and then put the feet out of bed.
BUT my legs were very weak and tired – ridiculously so. Have written so much about these legs. They are not recovering as i had hoped they would to even their preBrainsurgery state.
- well weak legs can be part of having a chiari malformation
- they can be a residual effect of having had meningitis
- they could be due to the “acquired” brain injuries which i amassed last year.
but they feel as if every cell in them is weak and worn. fatigue still feels like an understatement.
i didn’t shower today – i did that job yesterday, I have to plan where and when i use energy for events.
so i sat – on the closed toilet seat, and applied the make up.
OH popped up with a second reinforcing cuppa 🙂
Then i get up and wash my teeth on the way to my be.
i brush my hair- and tie it up in a way that isn’t painful – and that is NOT easy to find.
i SIT in the bed to get dressed.
It’s a decision again about energy conservation.
So after about the hour this procedure takes, dressed.
i go downstairs.
I am tired. THAT has counted as work done!
TIRED legs by the time i got there.
sit down on the sofa, and open the laptop.
a bone of contention in our house is my laptop.
SOCIAL networking is NO replacement foe SOCIALISING.
but i have no opportunity really to socialise, so the superficial flawed contact i engage in on twitter, hacebook, even here, blogging, is my window to the world.
i text my daddy – always do. What has he done? What’s new? Who was he chatting?
a few likes, a few witty comments, a thought for the day.
Sitting here about 1 o’clock is lunchtime.
my husband makes my lunch.
sofa…my chair… laptop…social animal…tweet…facebook…chat the friends i never see…
then another cuppa
chat OH on and off as we do happen in same room .
i have phone call to take today – quite an important one. so therefore am STILL awake.
That took about the last 45 minutes.
you see the real killer irony is, that despite the fact that my brain is playing dirty tricks on my BODY, it feels cognitively as sharp as ever… thus the wording of the blog…the reason it all happens “AT LEAST I HAVE A BRAIN!”
but now…after the concentrated effort of the call…its time to sleep.
Sleep is not a luxury, it is a “REBOOT”.and an involuntary one at that.
Am now putting on the headphones and selecting the musicmy sleep will enjoy today
-another wee weird useless piece of information, but my brain does choose the music!
during the day sleeps are on the sofa- otherwise my brain may interpret as night time.!
my chair..almost molded to me now.
LAPTOP on knee…my sign of life to the outside world…for SLEEP, laptop onto table.
TODAY the activity am conserving the ME for is, am going for an hour and a half to train a wee local choir “Caritas”… i gain the feeling of human…as the music is what my world used to revolve around. Now i organise my world to leave a little possiblility to do that.
After choir,which i will take seated, and walk to and from the car with my cane Hazel…
it will be a nice sit down…
laptop poised again.
back to my sedentary self
and that is IT…til BEDTIME.
that’s a day in the life of a chiairian.
a life of chronic pain, numbness, neurological defects and fun
oh Lord did i miss out the painkillers? Well ….slot in a cocktail at the time of your choice.
am SURE people wonder how i FILL MY DAYS!