Invisible in Illness

People think I’m lazy but that story isn’t true I’d like to see how they would cope feeling all that I do

So many illnesses are silent invisible unseen People drowning in the darkness People treating us so mean

I know you probably never wondered what a day is like for me Or what a day is like for anyone who suffers silently

If I may I will enlighten you maybe even change your mind So please grant me a moment if you would be so kind

The list is long and full of letters and words hard to pronounce Abbreviations labels things you would denounce

I’ll go from top to bottom or maybe bottom to the top for the head it is quite complicated a good place for us to stop

I was born with a condition my child was as well our version is quite mild for others it is hell

It’s called EB for short the butterfly disease Our skin does not stay attached to toes feet hands or knees

My feet are always aching, morning noon and night. I hobble and I limp; it must be quite a sight.

My legs are quite a problem, though they never used to be. They cramp, they crack, they spasm, and I dislocate my knee.

My ankles are a weak spot, that frequently I sprain. Despite the trouble that this causes, it's a four of ten for pain.

My calves and shins cause misery, it's very hard to sleep. I toss and turn and kick, instead of counting sheep.

My stomach’s often grumpy, never sure what it will do Acid reflux, bloating, problems with my bottom too.

My back is where it started, the pain when I was just a kid. It never went away, no matter what I did.

I lived with that for years, before a sudden change. There was severe pain that really seemed quite strange.

There was no injury that happened, but my shoulder hurt no less. The pain was so intense, I really felt a mess.

I couldn't raise my arms for long to even tie my hair, it's gotten to the point it is a challenge to do self care.

I thought I might be dying, or had some unusual disease. I hoped to find a fix that would put the pain at ease.

For years and years I suffered, never knowing why. Twenty two years from the start, a diagnosis made me cry.

Now for just a moment, I'd like to talk about the pain. Why it is such a struggle, why it is such a strain.

The pain inside my shoulders is like a sharp, electric burn. A pain so intense, it makes my stomach churn.

There have been times I’d vomit, when the pain was at a ten. If I was lucky, I'd pass out, then wake and wonder when this all would end.

Something new and fun for me is the electric jolts in joints. It only lasts a moment but this progression disappoints.

You see the problem is what happens when the jolt has passed, there's a weakness lingering though the pain was fast.

This weakness is all new to me, it makes me pretty sad. My hands don't work like they used to, they gave me everything I've had.

My hands earn me my living, my hands help me make art. What will this weakness do to me? Is this just the start?

Everything feels stiff, it aches, it burns, the struggle’s real. I wish for just a moment you could feel the things I feel.

I’ve lost my place where was I? It’s easy to forget. I guess I haven’t mentioned my list of diagnoses yet.

I have fibromyalgia, which causes all this pain. Weakness and fatigue, and a foggy brain.

I have attention deficit, major depression too, anxiety and SAD, what’s a girl to do?

Let’s not forget the IBS, panic and CPTSD. It’s never been an easy thing for me to just be me.

I’m sure there's more to tell, some things undiagnosed remain and maybe I've just forgotten, thanks to my divergent brain.

Sitting comfortably in bed, my pain’s a three or four. After a long day at work I’m an eight or so of a ten point score.

My house just gets neglected, sometimes my family too. By the time my day off comes laying in bed is all that I can do.

I might make dinner or maybe order in, and if I'm feeling strong I’ll do a bit of laundry or take the garbage to the bin.

But to be honest, that's just the surface, I could share much more. All this heavy information just might make you snore.

I could elaborate, but I'll stop there for now. Feel free to ask questions about living my life and how.