Sunshine on a rainy day
Posted Thursday 21st November 2013 By Ericka Waller
So after qualifying for a clinical trial, I had my first infusion of the Anti TNF drug Tocilizumab. The trial is to see if the drug can be taken without Mexthotrexate too.
I don't know if I will be one of the people who has their Meth reduced. I am grateful to be on the trial either way. The people who run the Brighton and Sussex Clinical Instigation and Research Unit are amazing.
I have never felt so listened to. They understand when I tell them about fatigue. The ache in every muscle. The weight on my shoulders. Arms that cannot be bent, feet that cannot lift. The only release the disorientating oblivion of sleep.
They explained it's the same fatigue experienced in flu and how the Tocilizumab could help.
When they examined me, they did not over-squeeze swollen joints. They warmed the stethoscope first. I had ECG's, X-Rays, blood tests.
Until your body has been attacked by it's immune system, turning on itself, until it destroys you as it's supposed to destroy foreign bodies in you, you cannot understand.
You are simply not the person you were. They seemed to get that.
The infusion was pretty good. Saline first, then the drug, eight times my body weight.
It was such a tiny bag.
I looked at it and wondered how that small pouch of clear fluid could possible make any difference.
The sea sparkled under the sun out my window as the cannula went in. I turned my face towards the light and drifted away.
I woke to James' lips on my forehead. He smells like home to me. The cake he was holding smelt pretty good too.
I felt safe. Woozy and weird but safe. I went home to bed. The girls came in and filled the spaces around me with chatter and sticky fingers and love. I stroked their hair and wondered if something might finally change
And it has. Today I did the school run. Today I walked the dog. Today I did the hoovering. Today I chased an escapee chicken round the garden. Today I plaited hair and sang into the brush. Today I picked up my cold daughters and held them against me the in wind as it swept leaves across the playground. Today I stopped to chat to people. Today I have not cried.
Today I feel like somebody I used to know.
I know it's early days. I am prepared for the dip that I have been told will follow this high. I know that my RA is not gone, will never be gone. It lurks like a filthy secret. It will always be a stain on my skin.
I know all of this, but I also know that doors that were slammed in my face the day my feet stopped working are creaking open again.