This week has been hard. And I don’t mean everyday hard. I mean effing hard!
I have started another immune supressant therapy. I hoped this one would be the one. We both did.
A week earlier:
I told my husband many times how scared I was that the new treatment might end up the way the others did. Painful. Soul destroying. Heartbreaking. Failure.
But we agreed that despite these fears we should try one more time.
So he called the nurse and arranged a time. She arrived and administered it. She left. We waited…
And I hoped.
After being up all night in bone aching, agony, fever, nausea and crippling, scream-out-loud stomach pain, midday has come and D has been up all night with me. We are completely tired and won’t know when this might end. We can’t afford to think about it. It’s a mind game as well as a test of endurance.
After taking buscopan and OxyContin he arranged some heat packs on my joints and stomach and moved in to comfort me… again.
If only I had a dollar for every time we were here…But the money would never reimburse us for what we have been through and lost. Ever.
As I lay exhausted beside him I began to study him and quietly admired him. No other man has ever done what this man has done for me. Nor would they.
You see, my blog has been a diary of all the things and challenges that I have encountered over the past 10 years. Maybe someone will read and understand. Maybe no one will read it or ever understand. Regardless. It is the world seen through my eyes and my heart… but I also realize I am not here alone.
He has been here too. Listening. Helping. Consoling. Advocating. Nursing. Injecting. Crying. Hoping.
I will often try and post pics of our little adventures and the happy times on social media, so people can see that I am trying to hang on and hang in there. That I am being as brave as I can be. Always…But so is he.
People rarely or never see what he sees. Not even doctors. He has a front row seat for the worst things and the hardest things that happen to me and to us.
This blog is dedicated to him.
The pics he helps me take. The selfies he has helped prepare me for, they are often completely out of context with the experiences and realities that he has. The experiences and reality we both have.
I read an article recently about an actress and her struggle with domestic violence. She had provided pictures of the evidence of her experiences to the magazine and in one picture she shared her bruises and scratches with the world, so they might see and appreciate. Her bruises were faded and her eyes were red from crying. Whatever people may think of the article, it occurred to me that it takes a lot to show yourself at your worst. At your most human and vulnerable. Women especially.
We are rarely willing to let ourselves be truly seen and possibly judged by the world.
Everyone wants to be perfect. Or as close as we can get.
But D has seen the real me. Everyday. Every heartaching moment. And some how he still sees me as the beautiful and wonderful partner he married. It’s a true miracle.
And that is why I had to write this FOR D.
This is what HE sees everyday and somehow he still loves me… it’s because of his strength that I want to find the strength to show what he sees and go completely outside my comfort zone. To honour what he does and all the amazing husbands/partners/wives/carers in the world… thank you. Thank you. Thank you.
Love you always…