A day in the life of one of "us" Im sure you can relate!

I hope you never feel so tired and weak that the thought of getting through another day is painful,both physically and mentally.
I hope you never know the feeling of your feet each weighing 50 lbs as you walk. Along with the feeling that you are walking on thousands of tiny pieces of sharp glass all day, every day.
That when you get up in the morning, you don't have to stand a few minutes while leaning on the bed til the burning pain subsides and can catch your balance and maybe feel your feet now to try and walk.
I hope you never put your hand in your pocket and feel like you are being stabbed. Or that everything you touch feels like sandpaper. That you don't drop almost everything you pick up because you have no strength in your hands.
I don't ever want you to know what its like to be stuck with a needle 3 times by a "pro" to have an IV treatment that lasts at least 6 hours and you get a massive headache, break out in hives and bruise like an addict. All for an infusion that only seems to make things worse.
That walking up a flight of stairs feels like you have walked 3 miles with 20 lb weights on each leg. Or you stand up just to fall right down and break your foot with no option to treat it. Your other foot hurts so bad from taking the pressure off the broken one. People look at you funny as you walk with a limp or are so slow they are making remarks as they pass you because you are slowing them down!
I hope people don't look at you strange or say rude things to you as you park in a handicapped spot because walking more than 15 feet is a serious workout for you.
I hope your child does not have to help you with a simple task like opening a bottle or buttoning a shirt. That your child does not have to watch you suffer as you try to cook dinner but your burn yourself because you can't feel that your hand is touching the hot pan.
That sometimes just taking a shower and being able to lift your arms long enough to wash your hair, as you pray that you don't fall when you close your eyes is enough to make you so tired you need to rest for 15 minutes.
I hope you never have night sweats or hot flashes that wake you up after 4 hrs of sleep and you can't go back to bed no matter how tired you are.You then try to get through the next day without snapping on everyone because your lack of sleep is causing you to feel like a zombie.
I hope you never know the feeling of your legs going into spasms that feel like your being electrocuted.
I hope you can keep focused on a project without forgetting what you were doing, or have a conversation and not go blank and have no clue about what you were just about to say.
I hope you don't have to walk along the edges of a room because you know you"ll need a wall to catch you when you loose your balance for no reason.
That you never have a knot in your stomach all day everyday because your just hoping for an answer.
I hope you never know what its like to "look" great but feel like your body is coming apart at the seams..
Your arms and legs are so numb, but the slightest touch sends you through the roof with pain.
Not to mention the stress of being unable to work and contribute to your family.
To have no support from your own blood relatives.
To feel like a terrible parent because you just can't do more than half of what your child wants or needs from you.
This is just a touch on the surface of my daily pain and frustration.
I'd never want you to feel as helpless and useless as I.
The most simple task to you is my biggest accomplishment of the day.
Having a silent chronic disease is more debilitating than I could have ever imagined.


Unfortunately, I do. BUT, your post confirms what I am going through, and I am going to print out the text of it and pass it along to my loved ones. Thank you for your post!

Thank you for your post...