A fox was following a scent around the field this morning, making yipping barks at regular intervals. They seemed scrawny and distressed, hungry from the winter, but perhaps its now mating season. In the past few days, three friends have referred to me as being a warrior, but today I’ve been hit and lay bleeding with period pain. I delay coming in to visit you for an hour, till I can manage to drag myself out of bed. I skip the run at the gym and just go for a shower. I borrow your hot water bottle and massage you sitting down.
The clinic was short staffed today, three nurses to four patients instead of two nurses to two, so they asked me to be with you while you trained with the NIV mask. I am more than happy to do this, but sometimes I notice just how much nursing work I do for free at this clinic. There should be a subsistence wage for carers, at this time in life when you do so much work but have no time for a job.
I’m feeling down about money today. We don’t manage to cover our costs right now with the tiny income from your sick leave and mine, so I’m having to use some of the house funds to buy food and fuel to be able to care for you. I swore I wouldn’t touch this and I feel disappointed but I didn’t have a choice. I’ll return the money to the house fund when I have an income again, when I’ll be working for you as your personal assistant together with the dream team we are now beginning to gather.
Our heartfelt thanks to everyone supporting us, in countless ways, to our dear friends and family and to the infinite kindness of strangers, to the forest, waters, birds and all beings. This diary is dedicated to you.
Thank you to everyone who has donated to our Build a House of Dreams for Patrick gofundme, you have absolutely blown us away with an ocean of generosity. All donations, both on and offline have now been added to the gofundme page, pooling an astonishing 409 383 SEK. You are supporting us beyond our wildest dreams, while making them a reality. Thanks to all of you, we can continue building our home and centre for A R T I S T S in R E S O N A N C E this spring, now with the help of a builder. This gives us great hope.
In case you are new to this diary, Letter to my Love with your Brain on Fire can be read as a prelude.
Your comments, likes and shares are so warmly appreciated, even if it takes a while to respond… I promise we will eventually!
 | A guest post by
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Dear Julia,
That you’re exhausted and stretched thin is justified. What you’re doing is extraordinary, should be properly resourced, as you say.
I hope you can get some good sleep and dream of this dream team you two are assembling.
Sending you a big warm hug Julia. I hear how exhausted you are. 💞