Just so relevant – Every single day
Its my daughters birthday & I feel awful
Its not “in my head” the pain is real
So here’s a few words about how I feel
“Me” has been lost & “I” has faded
My “happy “My “fun” have all degraded
The “go-to” person who sorted out issues
Now cannot survive without tablets and tissues
I’m a shell, a shadow, a rambling ghost
But do you know what hurts this ghost the most?
The “looks” it gets as it moans from pains
Undisguised disbelief even though it explains.
Even worse, on days when the ghost has gone
When “I” feel like maybe, Life can go on
I know its fleeting when “Real Me” is back
As its anyone’s guess, till I am under attack
From this thing, this word, this condition from hell
That’s ripped up my life & consumed me as well
The friends I once laughed with, have all disappeared
I don’t blame them , I’m boring , not me, just
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Behind The Scenes - Life as a Spoonie 
you are sooo right. My MS is crazy with 53 lesions, but the thing I ignored is a bitch too. I’d love to just have one to deal with, but we don’t get to choose. All I can say is love as hard as you can and never take things for granted. I don’t know what’s causing my agony and do not really care. Whatever your name is, is neither here nor there. But there is so much agony…, your name is irrelevant. Just make it stop.
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Hang in there fellow spoonie! It sucks especially bad when you feel sick on days when you are expected to be happy. I was like that for my birthday this year. I felt guilty because everyone around me was trying to make my day special and expected me to be happy and enjoy myself. But I just wanted to curl up in a ball and stay in bed. One way or another, I did manage to make it through the day and find some joy in it as well. It is always a struggle to feel happy when you feel miserable, never comes easy, but I am afraid of what it would be like if I gave in and did not keep struggling.
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