rareillness

I just need someone to hear my cries tonight and to know that I am really hurting. No one around me seems to understand and/or care.

My doctor had me try it and the first day my pain went from a 10 to a 3! It only lasted for 2 hours though and then after that it did nothing at all.

#Medicine #Arthritis #Fibromyalgia #EhlersDanlosSyndrome #ChronicFatigueSyndrome #GERD #rareillness #ChronicPain

I had go decrease my work hours even more. 2 hours a week or every two weeks. The pain is just getting so much worse. THANK GOODNESS my work family is so at ease and gives me whatever I need.
I think #Lyrica made it even more severe than before. I had to have help from my little brother to tie my shoes last night.
If there is one thing you can always count on with pain, is that it will bring #Humility

#ChronicPain #Fibromyalgia #EhlersDanlosSyndrome #ChronicFatigueSyndrome #GERD #rareillness

#rareillness #ChronicIllness

#invisibleilness #Bipolar #Paranoia what question or sorry comments to your illness do you get. Mine is you look OK today #ChronicIllness #invisibleilness that's why it's got a name, so about 2 days a week I'm physically able to put makeup and dress nicely if I have to go to the town. If they could see me the other days of the week. What's yours or maybe you get the same problem as me. Interesting

Relax your muscles, the doctor says, here
Again those words that make me want to laugh
If I knew how sir would I lay here now?

In hospital, out hospital, my life
Will this help me? Well, maybe, maybe not
I take the handful of pills. Then I sleep
Little lucid?..sleep, little lucid?..sleep
Take these for pain and these to relax you
But again it's sleep, no pain in the sleep
No life in the sleep, no thought in the sleep
I dream of a kiss, to wake me for good.

It's progressive, but lots that we can try
The words still echo in my mind...9 years
One little drag of a leg, at first. BEND!
I stand still, it bends. I walk, it's stiff
WHAT? BEND! My brain is telling you. BEND!BEND!

Then I fall, what happened? I was fine!
No hands went down. The floor came up to me.
Like a soldier stood too long. Now he's down
A noise...thud. anxiety, thud. THUD!THUD!
Oh my body aches, my face bleeds. Again
Why do I fall doctor? No warning...fast
Don't know? . They don't know, but don't they know all?
My subconcious knows. It sees danger..panics
But reacts all wrong, judges danger wrong

Some walking in the house now, if alone
But outside my brain sees danger, cars, noises
Strange this thing. Wheelchair safe outside , no fear
No chair, my brain tells muscles no! Don't move!
I'm full of tablets, muscle relaxants
Yet still my body goes stiff, my back hunched
How easy the muscles bend the back
A rope tightens round my chest, a big one near?
A jerk. A jerk. COMING! I NEED MY BED
Tablets quick, a big one's coming . Too late.

Jumping, jerking, muscles spasming the pain!
It won't stop! Not ever, I'm sure! Breathe! Breathe!
Calm down and breathe and soon it would stop
But I can't, a snatch of breathe . Muscles stretch!
Oh how I pray for sleep , please let me sleep
Once sleep was a demon to me. No more

So much more to learn, but no one cares #Rare

Why does no one care? They get angry, when they know emotion sets my progressive illness off. I don't talk about it anymore. Dear mighty, I wish I could share .