Preparing Mentally for Plasmaphoresis

A little life update and a peek into how I approach the hard stuff.

Before you read on: I'll briefly mention a medical procedure. This is a no-angst post, but if medical content isn't something you can take in today, that's okay ... come back another time. I take trauma-informed leadership seriously, and I only ever want to put good into the world.

You are the guardian of your mental health. Fight like a gladiator to protect it.

I'll be starting plasmapheresis next week, which means I'll be admitted to hospital for a few days each week for the foreseeable future. I wanted to give a heads up that I may be less available, less productive, and might drop out of plans. Please don't take it personally, it comes from a place of loving life and wanting to protect my capacity so I can show up for the people and things that matter most to me.

But this isn't a doom and gloom post. I want to talk about how I *prepare*.

I am a firm believer that we are the guardians of our own mental health, especially when facing things that are painful, scary or distressing. When you're walking into situations where you have very little control or autonomy, preparing in advance to reclaim even a small measure of it goes a long way in managing fear.

Plasmaphoresis is a procedure where they remove the plasma from the blood and replace it with albuim from blood donors. To do this they need large bore IV access to remove your blood quickly, run it through a machine, and get it back into your system quickly. Unfortunately after 6 years of immunotherapy, my veins are not great and they cannot use my port- a - cath for this as it isnt big enough. So if I am going to be having this procedure long term I will need to have my port replaced. Which means another awake surgery (not fun). They want to see if I cope with this procedure before putting me through a surgery. We will try ultrasound guided IV access but will likely end up with a central line.... in my groin sounds like such fun, cant wait for that heavy sarcasm

So there are obviously things I am afraid of, so how can I set myself up to face it with a calm mind.

For me that looks like two things:

**Filling my soul cup before I go.** Focusing on the things that make me genuinely happy. Surrounding myself with people I love. Doing things that bring me joy. ART has a huge part in that. Art helps me cope with all the scary. Building up a reservoir of resilience so that when I'm putting my trust and body in other peoples hands, I'm drawing from a full well.

**Controlling my senses while it's happening.** Eye mask. Audiobooks and music. Perfume and essential oils. I flood my senses with things that are safe and familiar, so my brain has something beautiful to focus on instead of everything else going on around it.

Here I am in ICU, sleep headphones on playing a beautiful Audiobook, eyemask at the ready and pillow covered in lemon myrtle essential oil. Controlling what i can control the get through the uncontrollable.

And for anyone else navigating serious illness while raising small children, here's something that has worked beautifully for us.

My son is 8. We work very hard to make sure he never carries the weight of my health on his shoulders. So when I'm going into hospital, his job is to go and hug all of his soft toys and feel which one is the squishiest, the cuddliest, the one with the most healing energy and choose that plushie companion to send with me to help me get stronger.

It gives him a role. It gives him his own small measure of control. And it keeps a gentle but firm barrier between my illness and his sense of responsibility. It's one of my favourite things we've ever come up with.

Anyway, that's my update. It feels fitting that all of this is unfolding during MG Awareness Month. I really hope this treatment brings some stability. I'm going into it with a full heart, paint under my finger nails and a good playlist.

Stay colourful 🤍