Today I had my seventh Humira injection. By this point, it should have reached full cumulative effect. I feel… slightly better than three months ago.
Recently I posted this picture on twitter.
This is just some of the medication I have to take most days. The beige and scarlet thing is the Humira injection pen (that’s just my practice one, they have to kept in the fridge).
I’m not going to lie. I wanted Humira to be a miracle. I wanted it to make my pain go away, to give my body back to me, to restore my life to me.
I preach acceptance, but I have yet to stop feeling like something has been stolen from me.
Recently I had some new flatmates move in and we had a party to celebrate. It’s been a long time since I had a party. I put on the six inch black and purple heels I haven’t worn since I moved back to Nelson. I drank alcohol – not very much, I’m not supposed to with the medication and I’ve always been a lightweight. So it took about half a glass to dull my pain enough to trick me into thinking I could dance in those heels.
I guess you can imagine how the night ended. My entire body went into revolt from the alcohol and the shoes and the dancing. And as my minor haze wore off and the pain kicked in, so did an intense feeling of despair that far outweighed my physical suffering.
Being ill is mentally, emotionally, and physically exhausting. Not only do you have to manage the symptoms of the illness itself, you have to manage an often complex medication regime and all its side effects, your mental health, and your overall wellbeing.
That’s why I ask for help.
Or, at least, I try to. It’s absolutely against my nature. I’ve spoken about that many times before. All I want is to manage on my own. But I can’t.
I need my doctor. I need my specialist. I need my therapist. I need my physiotherapist. I need my yoga teacher. I need my pharmacist. I need my friends and my family and my flatmates.
I need them all because it’s impossible for me to manage this on my own. I need support, direction, encouragement, structure. I need people to make sure I do the hour of exercise I’m supposed to do per day, the number of pills I’m supposed to take, the mindfulness practices, the stretches, the fortnightly injections, the sleep routines. I cannot do all of this, and my work, and try to live a normal life, on my own.
Last week I had a session with a physiotherapist who has special interest in managing chronic pain. She is literally the first person to say to me that she thinks I can be pain free. Everyone else is focused on helping me learn to live with it. Both things are important. I need acceptance – and I need hope.
A strange thing happened a couple of days after that. I have a friend Hilary. I met Hilary because we both serve on the Governance collective for the Women’s Centre in Nelson. At least, that’s when I thought we met.
I went to visit Hilary and her husband to chat about some research I’m doing on Nelson history – they’ve written four books on the subject. This research actually started eleven years ago when I was finishing high school and I’m continuing it now for a writing project.
Anyway, Hilary made references to pain while we were talking. I didn’t think much of it. Everyone knows I live with it, it’s not an uncommon topic.
However, when we were in the car driving back into town, Hilary said the word ‘spondylitis,’ and I, feeling ridiculous, said ‘Hold on a second – do you have AS?’
‘Oh yes,’ she says. ‘I wrote to you about it a year ago.’
And so she had. I had totally forgotten the letter, which arrived when I was first writing in the local newspaper. In my defense, it was an incredibly intense time for me.
I dug out the letter. I am not sure how much of Hilary’s story she’s comfortable with me sharing here, but basically, she was diagnosed after years of pain when she was 22. But the pain went away. For over 50 years. She only remembered the diagnosis when it began to give her trouble again recently. And she’s still very active and very healthy.
On top of that, my father remembered that I had, in fact, met Hilary and her husband eleven years ago when my research began.
Perhaps none of this means anything. Perhaps coincidence is just that. But the truth is – I need help. And help comes in all sorts of different forms. Hearing about Hilary’s life gives me hope.
So the Humira has eased my movements, loosened some of my joints, given me enough energy to stand up in the morning. It’s not a miracle drug. It’s just another thing in the jigsaw of health I am trying to put together. So are other people’s stories. So are other people’s voices and arms and hands.
And that’s another thing I have to practice accepting.
The giving and sharing of your story gives others hope too,
Thank you Sarah.