Hello, lovelies. Thank you for your messages of condolence and your uplifting puns, quotes and general love in my inbox and Twitter messages x

Well. This has been a run of frankly, major arseholery. Between the political situation (not just here in the UK but everywhere), covid, war, poverty, food/power/empathy shortages and shall we try NOT to mention the climate?!

On a personal note, it’s been intense with still trying to recover fully from covid. Loss of a family member and subsequent funeral. Balancing all the work with the summer holidays and now Parkinson’s has given its depressingly regular gift of a broken bone. Yipee. (Somehow in the night I smacked my hand so hard on my bedside table that it is now black, purple and a touch painful…I didn’t even wake!)

I’m writing this before heading to get an x-ray…see dearest readers, how I love you? It’s partly that and not wanting to spend my day in A&E for a minor break, holding up valuable services for those that need them. And partly being unable to gauge how bad it really is - the pain isn’t any worse than the dystonia currently contorting my thigh and foot.

I’m not going to fill your inbox with a discourse on my ailments or problems. We could talk about yours? Nope didn’t think you wanted to do that either!

I was wondering about that nasty shitbag voice inside that proclaims ‘Really? You’re tired? Again? How do you stand yourself?’ Followed by a particular favourite ‘If you were healthy, you wouldn’t be such a disappointment.’

Some days that voice comes after you don’t even have the impetus to reply to a text, even with a smiley face emoji. (That emoji taunts you when you are especially done in) Some days it’s after you have had a good run of events which you actually surprised yourself by managing and still having the energy to make dinner but the next three days you are flat on your back unable to lift a finger.

Chronic illness, and let’s be honest quite a lot of life, is bloody exhausting! But when does it just get too much?

Parkinson’s will eventually lead us to a fairly poor state and I am very interested in the discussions about euthanasia and end-of-life choices. There are all the usual things about not wanting to be a burden and so on. But surely there is a point where we think…ok, that’s enough of that now. I am worried that when I reach that point the option for me to bow out will be taken as I may be perceived to be unable to make that choice. Here in the UK, it is profoundly illegal to even discuss the idea of someone ‘assisting’ your end, even driving you to the airport to fly to Switzerland would be considered collusive. At my dying end, I don’t want my loved ones to be made into criminals!

There is a possibility that I might change my mind and any thread of life would be desirable to continue, however poor in quality. That’s part of the issue; humans aren’t consistent.

What we excel at is resilience. Even through the direst of days, moments, and lives we persist in laughter, love and finding joy.

With love

Emma xx

P.S Hand update: just a bad bash coupled with tendonitis, so no hoovering or heavy lifting…but a wine glass should be fine 🤞🏻🍷