I don't know

How can I convey to you
The smallness of my world
The losses that I daily live with
The lack of simplicity for me
in even the simplest thing?
How can I convey to you
how little I can actually manage,
that even the smallest task
is beyond my reach?
What can i say to you
that will open your eyes
and help you understand
the painful reality of my existence?
How can you begin to comprehend
the immensity of my losses,
and see that all the things you take for granted
simply are not options?
When will you see how very hard it is for me
To even be with you or talk for a moment,
And that my experience is never the same
as yours?
When will you understand that my starting point
is so far below yours
that I never reach the starting line?

I need you to know
that each moment
my body is in torment
and that you, were you to have a 100th of the experience I have,
would be immobilised in bed
in extreme distress and screaming for a doctor
to make you well,
expecting it to be so.
i need you to know
that there is no medication to take the pain , the paralysis, the numbness and the 50 or so other serious symptoms , away.
I need you to know that for my disease
there are no medical consultants to advise , support or treat,
There is no accurate dissemination of medical information
to help others understand my severely disabling neurological disease.
I need you to know
that actually i don't know what to do to cope
for most moments of my life,
with the sheer intensity of pain and symptoms
pounding on my body.
I need you to know
how hard it is that
I don't know what to eat
that wont irritate my stomach or aggravate my situation,
I don't know what i can physically do,
whether i can open my eyes, or speak or take a drink, move my fingers , eat unaided.
I don't know what it is safe to do in any given moment
whether I can sit up or hold something, whether i can stand or fall.
i don't know if I will be paralysed or too numb to feel,
I don't know if I can get up or move about.
I don't know if I can get to the toilet or wash my hair
I don't know if i can understand a question or hold a conversation.
i don't know if my muscles will work or not respond
from one moment to the next.
I need you to know
that all the things that you take for granted
are beyond me
for most if not all of my life:
Getting up
Getting into bed
Going out
Seeing friends
Chatting on the phone
Seeing family
seeing anyone at all
Walking
Talking
sitting
Holding a pen
Using a phone
Texting people
Seeing neighbours
Talking to a passer-by
Writing a letter
Holding a knife and fork
Making Love
Being touched
Kissing
Eating
Swallowing
Chewing
Drinking
Having a treat
Eating an Ice cream
Going to the beach
Going on holiday
Swimming
Playing games
Cycling
Skiing
Bowling
Having a massage
Dancing
Reading
Going to the theatre
Going to the cinema
Going to work
Going shopping
Trying on clothes
Sitting in a car
Going out to eat
Digging
Painting
Mowing the lawn
Doing the ironing
Chopping your food up
Keeping appointments
Holding a cup
Opening your eyes
Listening to music
I need you to know that all these things
and a whole lot more
are not accessible to me
like they are to you.
Everything that i want to do,
even the basic things like speaking or moving,
i have to wait and see
if I can, if I can't if I might.......
I have to accept
my reality
is not consistent or reliable
or regular.
What I find difficult
is not my disability
but your inability
to comprehend, to listen and then hear,
or to see just how difficult , complicated and complex my life actually is
and how hard it is for me to interact with you
or anyone. infact
i need you to know exactly why you don't see me
or hear from me, except sporadically.
I need you to know
just how much effort I put into even these small gifts of contact.
and how ill they make me afterwards.
I need you to know how hurtful it is
when you ignore me
or give up trying
thinking I don't care.
Or worse, pretend that I am not that ill
or not even know
15 years on,
that I am noise sensitive, so how loud you speak will affect my symptoms,
that I am in pain constantly without ceasing
and never comfortable in any position,
that my energy disappears rapidly and my symptoms increase from the effort of seeing you.
That my body is literally in torment every second.
I need you to know that if I do see you it is not ever
easy, simple or normal for me.
because i am ill in every moment,
I need you to see me as I am
not how you want me to be.
I need you to know all this , but more than this
I need you to show me that you know it.
Because right now i am weary of not knowing
and feeling misunderstood. again and again.
and i am weary beyond weary of the torment
that goes on and on.

Linda Crowhurst 8.6.08