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!

Coping with disease

Most people would not cope with what I cope with on a daily level. They attend the doctor for a sore ... (Fillin the blank). I am sore all over. My stomach does not ache but that is about the only part. My breasts do not ache but the muscles above them do. Occassionally I feel the anger about my situation bubble to the surface but what does that achieve? I already attend every kind of doctor known to man and have searched for many years for help. I mostly accept this is my lot. It is a sad kind of acceptance.

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?

is this the way it goes?

I have not posted for a while,
often i sit and stare,
at the computer,
wondering what to say,
not knowing what it is all about anymore.

All the fight has gone out of me, all the rage.
Maybe i have turned into my disease.

Hear no evil

An illustration of one of the three semicircular canals of one inner ear and associated structures

Soon I may not be able to hear any evil - well I suppose that is putting a positive slant on it. I seem to be going deaf, well more deaf. It actually feels like the ears are blocked full of something. It's like when you are at an altitude and you need to blow your nose to unblock your ears, but this does not unblock.
Is it part of Tinnitus? One specialist said it sounded like Menieres Disease and said "but that is the least of your worries."
When people, especially my husband, are not talking in my direction I cannot hear what they are saying. I'm not sure if this is because I am lip reading and not knowing it, or because of the pitch of his voice or what?

DIAGRAM: An illustration of one of the three semicircular canals of one inner ear and associated structures from Author United States government from Wikipedia public domain

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

Listen up.

There are a thousand chirping birds in my head most nights - in the day they reduce to a high pitched group of crickets singing in unison. I am a nature lover but this is ridiculous.

Some people might think it would be lovely to listen to these constant companions but I wish they would get out of my head and leave me in peace and quiet. They are sometimes so loud it is difficult to hear other things like what the children are trying to say to me.

I think people who have tinnitus may become lip readers without really knowing it. I noticed this when a new doctor was speaking and I had to work really hard to listen as I could not read her lips - she had a strong accent which makes lip reading difficult to the novice. I have only had tinnitus constantly for 6 years now. It is just added to my list of symptoms and no doctor (in the many that I see) has ever investigated it further.

To tell the truth it is only really annoying on those nights when I cannot get to sleep easily and I lie there listening to the sound of a thousand chirping birds...

(BREAKING NEWS: Henry Ford Hospital offers hope to the more than 50 million patients with tinnitus. )

Oh Night Divine

Can you remember the feeling of waking in the morning after a good night's sleep and feeling so good - you feel rested and have not a pain in your body. Well that is a very rare feeling for me and hundred's of others who suffer from chronic undiagnosed pain.
Better sleep is not about getting a better mattress, no matter what the salesman or The Better Sleep Council brochure will tell you. It also says on the brochure that a good night's sleep is essential for your mental health, your emotional health and your physical health and "If you think you are suffering from a serious sleep problem, such as insomnia, sleep apnea, narcolepsy or restless leg syndrome, consult your doctor or a sleep specialist" It does not tell you that your doctor may just add these symptoms/conditions to your already large list of symptoms and do nothing about it. If you think I'm angry, I am. I just want a good night's sleep...well that's a start anyway.
Apparently what I have is not life threatening - according to my doctors - I have no liver problem, no heart problem, no kidney damage (all the pain killers may have something to say about that soon!) so just give me something to manage the pain.
But I digress - the pain specialist - who is treating me as if I have fibromyalgia, as no other diagnosis has been offered, says all my symptoms may just be due to sleep deprivation. So did any one order a sleep study??? No one ever checked for tender points either!
See previous post 'Go To Sleep' Tuesday, May 1, 2007
I am not my disease - I have a life. (but it is getting smaller) Oh Sleep Divine.

PAIN

Note the capitals - PAIN, chronic pain is a strange thing. You start to live with it, you cope with it, you manage it but you do not see it is slowly changing your life. You stop doing certain things...maybe not going out at night or getting someone else to do the shopping, sitting more, exercising less...whatever. It is insidious. Then one day we have had enough and we try a new doctor, a new drug. We need to try other things but it is hard to think clearly when we are in pain and just trying to get through our day to day existence. I will try and place here links to things that help us - those in chronic pain. Maybe you could post something that has helped you.

I am going to try

• yoga
• massage
• emu oil
• hot baths

See more info on pain and a brief history of pain

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer,