Sunday, 18 June 2017

My heart is breaking

"My stomach pain is 3/10 but the muscle pain is 7/10"

I know what that muscle pain (myalgia) is like, I have struggled with it daily for the last few years, maybe you too know how bad it is. Maybe you have had 'flu and you felt every muscle in your body scream and ache, that's what we are talking about.

But not in my chronically ill broken body, not a friend, but my sweet, funny, kind, teenage daughter.

I know what it is like and I don't know if it makes it better or worse, I know the feeling of sleeping for 10 hours and waking up exhausted. Feeling like your warm, soft bed is full of rocks, feeling like you have run a marathon, when you have only made it to the bathroom. I would gladly double my load if only that my daughter didn't have to go through this too.

We are full of hopes and dreams for our children and those never include chronic illness and suffering. We worry about them getting into trouble, not doing well at school, not making good friends, getting sun burnt or eating too many sweet and getting a cavity. Something we never see is months or years lost to being in bed sick, weekly hospital visits and them getting used to blood tests.

Then she starts to get used to being in pain. I ask her several times a day "How is the pain?" unless I press her beyond answering "OK" nobody would be able to tell that she was really suffering, so I adopted the hospital 0-10 pain score. She lives in between 3-6 out of 10 and only ever gets upset when it climbs past 7. It feels so wrong that a child should be used to pain and able to cover it up on a day to day basis.

Worse than the pain, worse than any of it is when the doctors don't believe you, recently a senior doctor at the hospital took me aside and tried to tell me that my daughter wasn't in as much pain as she said, "She isn't rolling around the bed screaming.."

I heard myself respond a lot louder and more assertive than I meant to, "When you live with pain every single days you don't roll around and scream anymore!" I saw the other doctors around flinch and the senior gave up what he was trying to tell me.

Surely any sane person can realise that you acclimatise to pain,  you might start of screaming and rolling round the bed, but a year later, you wont be shouting out, because nobody is coming to help, so what is the point?

This is what kills me the most, its worse than the rest, the missed school can be caught up on, life can be rebuild, but the experience will forever leave scars on both of us.