Impossibly Hard And Then Worse

 

“The storm is out there and every one of us must eventually face the storm. When the storm comes, pray that it will shake you to your roots and break you wide-open. Being broken open by the storm is your only hope. When you are broken open you get to discover for the first time what is inside you. Some people never get to see what is inside them; what beauty, what strength, what truth and love. They were never broken open by the storm. So, don’t run from your pain — run into your pain. Let life’s storm shatter you.”
― Bryant McGill

Hey, Lovelies.

It’s taken a while to find my way here to my desk, to find enough breath, to find enough emotional space to be able to sit, to write, to share.

Last week was awful.

The hardest week I have done so far on my new regime for late stage Lyme.

Just when I had hoped to be relatively unscathed by my second round of ‘easier’ drugs’ the misery kicked in. Unrelenting body pain and general nerve pain that keeps me awake all night, optic nerve pain that makes me want to pluck out my own eye or to stab it with a  fork, double vision, headaches, tremors, heart palpitations and arrhythmias that terrify the crap out of me when they sneak up on me in quiet moments. Unremitting bladder pain. Vicious hip pain. Swollen glands under my arms and in my groin so painful that I can’t find a way to sit or lie that is comfortable. Skin rashes, a return of neurological incontinence, nausea, vomiting and diarrhea. Dizziness. Exhaustion of the body, mind and spirit.

Night sweats. Nightmares. Insomnia. Reflux. Itchiness. Insane stabby nerve pain that makes it feel like I am being tasered or having electrical shocks run through my body, ants crawling all over me and biting me (no ants – it just feels like it). Awful depression, anxiety and negative headspace. I know it is muddled thinking because of drugs, dying bugs and brain inflammation, but at times over the past few weeks I have wondered if my life had any value, any purpose. I feel like a complete and utter failure.

Honestly, I didn’t see how I could do a month of this, let alone possibly two years. I spend a lot of time crying in the shower, or crying in the pool. Crying quietly where I won’t bother anyone or bring the vibe down.

Last week I wasn’t coping. Still, I struggled up each day. I did microbursts of writing or tidying. I pep-talked myself endlessly, and sought out extra hugs from Ben and cuddles from the puppies. I told everyone I was fine, or mostly fine. I even managed to work a little.

And then it went from bad to the absolute worst.

Harry Dog, who had a heart murmur, suddenly over a 24 hour period went into heart failure. It was quick, and scary for him and for us. We made the decision, and a beautiful vet came to our home and helped us to end his suffering. There wasn’t anything else to be done. It was so unexpected. And suddenly we had a great big hole in our lives where our beloved friend used to be. Ben, Rufie Dog and I were so desolate. God, it was awful, although Harry had a happy last day and the most amazingly peaceful and loving passing.

Then I found out that even if my brain lesions heal they will leave scarring, many of the problems I am facing will continue after the drugs have done their work. As a beloved and wise family member and my doctors keep reminding me, I am doing this to protect my heart and brain from further damage, I am doing this treatment now to maximise my ongoing quality of life. But it is shit and hard and I’m so sad and tired and miserable, and quitting is not an option.

I know I have weathered storms like this before. Even when I have felt like I was dying, or was in fact dying, I have plodded along, gritted my teeth and kept going.

It’s true – face into the storm long enough and it reveals you. It breaks you open and shows you love and tenderness and awe at the wonder and fragility of life. It helps you find layers of yourself you just can’t access in everyday life. It makes everything so much more precious, and so much less important. It gives you perspective. It helps you become circumspect and accepting of what is.

It’s still shit. But somehow the shit becomes more about light than darkness. Eventually, you are transformed, even if only for a moment.

Although I am so very broken right now, I’m also filled with an impossible amount of love and light and gratitude and peace.

That might sound crazy, but that’s been my recent and continuing experience of hard things.

There is another self, beyond the hard things, waiting to embrace us in our darkest hours, and to whisper love and comfort and tender encouragement. There’s a peace in the center of that storm, or past the wildest hardest parts, and it might be a long time coming, but once it breaks you open and cleans you out, even in your brokenness you’re okay.

I’m okay.

I’m also not okay.

And that’s okay.

I miss my dog.

I miss reaching down and sinking my fingers into his soft fur, I miss his gentle kisses and his eyes filled with life and joy and happiness when he greeted me each morning.
I miss my old life.
I ache for all the things that have been rendered down and diminished because of illness and loss.
I’m okay, and I’m not okay.
I’m glad I am still here; still fighting, still loving, still writing.
Sending love, and encouragement for your own hard days, Nicole xx

Vale, Harry. You were a good boy, and you are deeply missed 🐾❤️