16 July 2019

I’m sitting here doing my morning wake up in front of the computer and I’m struggling to remember what I did yesterday. I’m never ‘awake’ at this time of the day, shortly after I get up. The brain fog is at it’s worst.

I had stayed at my (other) Partners house. I am non monogamous and have two long term partners, one I live with the other one I visit. No, they don’t have relationships with each other, apart from friendship. People not aware of how polyamory or non monogamy can work, don’t always get this, they think we’re all involved with each other.

Anyhow, I had stayed at her place. I slept in until 11am. Woke up, washed her dishes, had breakfast and a shower and came home. I took Clifford to the dog park for about half an hour, then I went into what we call in my house, The Nook.  The Nook is a place of cuddles, lots of blankets in winter, cups of tea, pets and Netflix and crochet, always crochet. It’s where I go to rest every day and I I’m usually sitting there for about 7 hours each day. I was very tired yesterday and had to stop and not do too much and just rest.

Tired is not really an adequate word to describe the fatigue I feel. Tired is something that people get after a late night, or a big weekend out. All they have to do is catch up on some sleep and they’re right again.  Fatigue is the word used to describe the ‘tired’ I get, but it doesn’t cut it either. Lots of people say to me ‘I had that once’.  What I have is not the same thing as a fatigue where there is a known reason, or a known reason is discovered.  I never wake up feeling refreshed from sleep and if I do too much, I could end up getting worse.  Only 5% of people fully recover from what I have.  It’s a kind of ‘sick’. I feel ill, there’s usually a part of my body that hurts and I have a plethora of other symptoms that go with it.  I’ve very weak, and if I push beyond what I should, I get even more weak. Lifting the pots on the stove is hard; Vacuuming is hard, emptying the vacuum cleaner is hard and any number of ‘small’ household tasks are hard. My brain fog is really hard to deal with, I can’t think clearly or quickly, I can’t remember things. One time I found myself at the supermarket thinking ‘what the fuck is this vegetable?’. I worked out what it was by using the images on the screen at the checkout. Eggplants are pretty weird looking really.  There’s also many other symptoms, but I guess the best way I can describe the day to day is waking up feeling sore and weak and very foggy.  I also live with the fact that this is my life now and I am unlikely to get better, ever. This is different from a short term, known fatigue.

I came home from the partners house. My other partner and Clifford were in the backyard. Clifford was so happy to see me, he was already in an excited mood but the added joy of me arriving home meant he ran around and around and around in the yard.  I then took him to the dog park straight away.  He learns things so quickly, we’ve only been there a couple of times, but he knew the drill of what happens next.

When we came back from the dog park I went into The Nook for the afternoon to rest. The extra activities of my partners back surgery the week before and the extra activities I’m having to do at home are taking their toll on me.

My partner had surgery on her back to fix up a herniated disk in her back.  It cost us a minor fortune to get the surgery, luckily we could make this happen. So she is home at the moment and she joined me in The Nook.

It’s actually really nice to spend hours watching Netflix, or listening to podcasts or audio books whilst crocheting. It’s not bad at all, I am forever grateful that I am a prolific artist and can do this despite being unwell.

Later that afternoon I cooked dinner. Very simple dinner due to dumb intolerances. Gluten free sausages, mashed potato and steamed carrot and broccoli.  Taste good though

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