#ootd took 2 hours




looking ok?

make up on.

clothes ok.

the parts you missed are.


THIS took 2 hours.

Getting from the bed  was such a challenge as the pains in my legs are horrendous

the overwhelming jelly-ish feeling i have in every fiber of each leg.

the difficulty “holding” a CUPPA which my hubby brought me, because each finger feels weak, painful, and slow,

head was so painful to lift  off the pillow.

it felt it was made of cement…too heavy for my neck to support.

that NECK was painful to move. at all.

(in case i forgot to mention, i am typing this with a glove on my Right hand – a fingerless glove bought to retain heat in that hand. It isn’t really working today as they fingers don’t want to open, or move independently. my brain today  is struggling with spellings, and typing is PAINFUL.i am trying to keep my hands flat and use as little independent finger movement or cat like finger movement as is possible… how inane…and it is SO PAINFUL.photo (47)


when i got up, getting clothes out of drawers painful…the bending over makes the headache amplify.

back paining from top to bottom….every vertebra moving is a challenge.

once clothes are out, i carry them to the ensuite.

i SIT on the closed toilet seat.

that is positioned at the makeup

the clothes are on the “shower stool” beside me….so no more bending is needed,

i WASH well this morning as would not have the energy to use up on a shower- one of my learned brain damage strategies.

Get dressed sitting down…bum up to put on pants obviously. otherwise seated.

Lift up each foot to my opposite knee (by HAND of course) and put them on.

ones with a strong rubbery sole which spread the weight evenly through my foot which doesn’t do that of its own accord now. They are great shoes…with attitude, and very me. BUT lets face it, standing flat is the REASON i chose them. medical prop.much needed one today.shoeswit


then make up.

am still on the closed down loo and have made “adjustments” which initially i resented my OT for suggesting, but you were right Siobhan. Have added mirrors at this “new” height for eye shadows. And everything is accessible from sitting on the closed loo (which was the alternative to a OT metal legged chair/stool)

so make up on….slowly and so painfully. raising my arms painful. legs painful.

Today is a day where my SKIN hurts me.

Then hair,

in my pre-chairian life i thought hair and nails felt no pain. BOLLIX.

on a bad day brushing my hair , with its new growth, weirdly growing, coarse patches, is AGONISING as your scars feel all new for no reason. so i use the “invisibobble” thing – a bobble which apparently doesn’t hurt, I would say it doesn’t hurt as much as any other. so thumbs up “invisibobble” creators.myhairhurts

but the pain LIFTING my arms. they are now made of LEAD and i can barely raise then to brush my hair and put in my ponytail…yep while sitting down.THAT good.invisibob


so FINALLY am dressed.


text my husband to come upstairs and help me hang up and laundry bundle yesterdays discarded clothes. as i could not do it, The dignity has long left our marriage. thank GOD i have him.

and then VOILA!

a made uplady.

in nice enough clothes.

with her  gel nails.

can you SEE the AGONY today is in the picture?


THAT is because it is an invisible illness

a sneaky illness that causes HORRIBLE life limitations.

chronic pain today is more severe than normal

chronic fatigue - Copy chronic fatigue but TODAY every single cell is screaming….. SCREAMING silently…as it is all invisible.

chronic loneliness as THIS type of life pattern is behind the doors of the house, within the walls of your marriage and family. and refusals to go out, are as you do not KNOW if you will be able to LITERALLY BE ABLE TO on any given day, but you start to fall off the invitation list.


i have a lifelong neurolical condition. which limits every day of my life and the lives of those around me. LOOK AT ME…as there are many more mes who you will meet, without seeing their condition.

now to sleep…(oh aren’t I lucky? so many want to nap?…….NO!!!!. I wish i had a choice)

600px-Signs_of_fatigue - Copy



Featured Image -- 7993





Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s