Invisible disability

Sometimes it is hard living with an invisible disability. Only my specialists understand and actually call it a disability. I have no walking stick or wheelchair, I have no limp or twitch and to all I look well and fit and maybe just a bit overweight. The receptionist at the physio department does not get it, my kids don't get it and my husband does not get it. Even other people with disabilities do not get it as to join this months disability carnival I was expected to talk about my fave ""things that make the world accessible for us."
I guess the only thing I can say is ramps and lifts, at least they are the only things that make my world more accessible. You see I can walk (though not the same as before and I can no longer dance or get down on the floor with my grandchildren) but if I walk too far or up steps the next day I have to lie horizontal. I have a muscle disorder, a form of muscular distrophy that means all my muscles are extremely weak (some more than others).
I also think my main fave thing of accessibilty is my new laptop as I could no longer sit up at the computer due to muscle pain in my neck and shoulders and jaw. With the laptop I can lie down and connect with others all around the blogosphere and they cannot see me and do not know I am lying down and am in constant pain all over. This is how I become Not My Disease on a daily basis.
Here are the links to the Disability Blog Carnival:
Rolling Around In My Head
Disability Blog Carnival #80 is up NOW!

Disease by Dean Rands

It tears me apart to say the words
To think the truth for just a second
Because then it's real - not a lie
And I'll have no choice but to forever cry

But still it's something I must face
And I must fight - win or lose
Because it's there - inside of me
Hidden in my skin - hard to see

I'm truly scared of what could be
Of what lurks beneath my skin
It may be hard for you to know
Thats because I cover it with a show...

Please read the rest of this 18 year olds poem here at a poetry community site called Poems and Quotes.
P.S. Dean. I tried to find you, even tried to register so I could get your okay but could not??? Hope it is okay?

I am a work in progress

(Grieving for the loss of who I was.)

The 5 stages of grief

DENIAL: At this stage I am unwilling to accept the truth. "I will soon awaken and it will all have been a dream - this is not happening to me - I can still dance, do my work, chase my children."

ANGER: I feel angry and may need to opportion blame. "Why me?" (in an angry voice) "It is there fault, they did .... , it made me stressed and that made me sick"

BARGAINING: "Maybe this will work. If I try this diet, remedy, religion etc and I will feel better and maybe it might even go away"

DEPRESSION: "I feel I cannot cope, there is no hope, it is all too much, there is no one who cares and no way out"

ACCEPTANCE: "I don't like what is happening but I have some level of acceptance - I can get on with my new life, it is a different life and I can cope."

I don't hold to the idea that we work through these stages in a linear way. I go back and repeat some of the stages sometimes on a daily level. That is what it is like for me dealing with chronic pain.

I think when I started this blog I may have been in angry denial - this is not my disease, take it away, I do not want it. It sounds like it could also be acceptance - that I do have a disease but it will not define me.

We are all a work in progress.

Thankyou jackiee1970 for photo