Rules for rest days

chronic illness

I can do the thing tomorrow, whatever “the thing” is. Hardly anything in life is so urgent that it has to happen right this minute.

There are different kinds of rest. I don’t have to stay in bed. But if I need to stay in bed, or if I want to, it’s okay to do so.

Small spontaneous activities and errands are okay, but if I have to ask myself if I should really be doing it on a rest day, the answer is probably no.

Sometimes I need more than one rest day in a row. That’s fine. Better to rest for a week when I need to, than to push myself to do Things and end up bedridden again. Because when I’m bedridden, Things aren’t even an option.

For me, with my health as it is right now, movement is not rest. Do not go for a walk, no matter how nice it is outside. Don’t do it. Go sit on the verandah and read a poem instead.

Breathe. Just breathe.

Sunday / Monday / Tuesday

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A group of us went to see The Crimes of Grindelwald on Sunday afternoon, which was a nice outing and a break from my lounging in bed. Controversial opinion: I like the Fantastic Beasts franchise more than Harry Potter

On Monday I rested again, but made it out for a couple of hours and joined the others at a lunch at Rhodes House. I met some current Rhodes Scholars and had many good chats about their studies and interests. I made another chronic fatigue buddy and we talked about the difficulties of managing fatigue and study and generally just being a human. I took a taxi back to the accommodation and rested for the rest of the afternoon, and one of the other Scholars brought some dinner back for me in the evening.

Today was another bad day for fatigue. I had a shower around midday, and have just eaten my first meal for the day (at 4pm). We have a group dinner tonight which is a half-hour walk from here, but I’ll be taking a taxi with one of the mentors who is also feeling unwell today. I might have to go back to bed for a little bit between now and then.

Tomorrow I have a meeting in the morning and then a final group get-together in the afternoon—we’re having high tea. It should be a pretty chill day!

On travelling with chronic fatigue

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Hi friends. Sorry for missing the last two days! My fatigue was super bad so I spent most of my time in bed or dragging my unwilling body to meetings.

But I am back! And feeling better. And I have good news and three days’ worth of stuff to catch you up on. Please excuse the weird format that follows, but I think it’ll be the best way to structure this one. Skip to today’s post (Friday 16th) if you wanna get to the happy bits, and ignore the last section if you’re bored or not keen on hearing me ramble on about chronic illness.

Tuesday 13th November

I woke up at 8am absolutely wrecked after the London reception the night before, so I went back to sleep until lunch time and then had a quick shower before heading off to my meeting. I spoke with Dr Steven Connor of CRASSH (Centre for Research in the Arts, Social Sciences and Humanities) at Cambridge. He was lovely, and we had a good chat about academia in general and the changing structure of the Humanities at Cambridge.

After my meeting I walked through a little park behind Queen’s College and around the corner to Clare Hall, where we had a group session on applying for Cambridge.

To be honest, it was not a good time. It is likely that that was due to my fatigue-induced bad mood. I left partway through because I was so tired I was sure I was going to either burst out crying or throw up all over the table.

I stopped by a café on the way home to grab a sandwich and some snacks for the evening, because I knew from the headache coming on that I wouldn’t be capable of going out to fetch dinner later on. I ate my ham and cheese toastie and skulled my coffee, then fell asleep for four hours. I woke up briefly to eat a muffin and finish the last little bit of Leviathan Wakes, then I went back to sleep until morning.

Wednesday 14th November

Wednesday was another tough day. I made it out for lunch with Gemma (my first meal of the day) and she very kindly relieved me of my washing so that I could go back to sleep.

I had a shower at some point, and drying my hair left me so exhausted that I had to sit on the ground in the bathroom for ten minutes before I could walk the short distance back to bed.

In the evening I took a taxi over to Anglia Ruskin University for their open night, and I’m so so glad I went. I met Dr Tiffani Angus and Dr Helen Marshall from Creative Writing, and they were both amazing. We talked on and on and I felt so at home in their company that I could have stayed there for hours.

Afterwards I stopped by the group dinner briefly to eat a little bit, then started feeling ill and fatigued again so took a taxi the short distance home. I slept for twelve hours overnight, on top of the however-many-hours I’d already spent napping.

Thursday 15th November

Today was better. I had a meeting with Dr Una McCormack from Anglia Ruskin this morning at Fitzbillies down the road, and it was so good. The meeting concluded with us agreeing that I would apply for the PhD program in Creative Writing with (probably) Tiffani as my main supervisor and either Una or Helen as a secondary supervisor.

Oh my gosh. I am so ridiculously excited.

All the other universities have been so amazing, and all the academics I’ve spoken to have been super welcoming and supportive, but I think this is the one.

Even at Stanford and Harvard, which I was so impressed with, I would have had to squish my research into their framework. But here, I can 100% do the work that I want to do. And these three ladies are fabulous, and accomplished, and a joy to chat to.

We ended up talking for over an hour, and finished up just in time for me to take a taxi to the bus stop. I met one of the mentors and two of the other Scholars there, and we hopped on the bus to Oxford!

I sat next to a lovely lady called Susie on the bus (the third Susie in my life, all of them lovely) and we chatted the whole way. We’ve swapped contact details and will be sending each other postcards once I’m back in Perth!

We’re now in Oxford, where I have no academic meetings. So this week I’m going to be a tourist, and rest as much as I need to. It will be a nice end to the trip, I think. In eight days I’ll be home!

Chronic fatigue ramblings

Okay, so here’s the thing. Chronic fatigue sucks. And experiencing a bout of fatigue while travelling on the other side of the world, so so far from home and my support systems, sucks big time.

I didn’t blog the past two days not so much because I was fatigued, but because being fatigued and unable to do things that I could do relatively easily just a few days before was so upsetting. I was in a foul mood both Tuesday and Wednesday, and anything I tried to write would probably have read something like Catcher in the Rye meets A Clockwork Orange. And not in a good way.

But hey. I’ve made it through another few days of fatigue and for the moment I have a little bit of energy, so that’s nice. I still met some amazing people and got to experience beautiful Cambridge (even if only from the window of a taxi). And I learnt that even here, on the other side of the world, I’ve got people looking out for me (thanks Aurora fam).

Unfortunately, my experience at the group meeting on Tuesday has turned me off Cambridge (the university, not the place). I left that room feeling like there was no space for someone like me at Cambridge—someone who struggles with chronic illness and needs extra time/support sometimes. I left that room feeling like there was no way I could possibly cope with the workload of a postgraduate degree at Cambridge, and that somehow that was a personal failing. Like I said, it was not a good time.

But we’re in Oxford now, I have some Anglia Ruskin stuff to work on, I have plenty of time to rest and no meetings I need to get up for in the mornings, and in a little over a week I will be at home with my puppy dog and my car and my friends and my family.

This trip has been amazing, but these last two days knocked me around a bit, and I’m ready for a hug and a cup of Milo.

(Thanks Robyn for sharing your Vegemite this morning—it was just what I needed).

Una said my jumper was very Tom Baker. I was pleased.

It has been a day

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Well, it seems I have a cold. I am not feeling very well and the fatigue is building again.

But I am still enjoying Boston. The weather is lovely at the moment—the air is brisk and there’s a low fog hanging over the city. The buildings here are beautiful. Some of them are clad in shingles and the neat rows remind me of the weatherboard houses in Vic Park back home. It’s nice.

We had a lunch at HUNAP (Harvard University Native American Program) today, where we heard about the services available to Indigenous students at Harvard and some of the courses taught there as well. Unfortunately I had to leave halfway through to have a lie down, but it was definitely still worth attending.

In the afternoon I stopped by the Coop (Harvard’s merch store—everybody here calls it the coop [like chicken coop] rather than co-op [like co-operative]) and then bounced around four or five different shops in search of new shoelaces for my boots. I had success just in time to jump on the shuttle back to the hotel!

The rest of the afternoon/evening was spent napping. I am taking a brief break from rest to write this blog post and do some admin tasks before my full day of meetings tomorrow. I might stop by the chemist in the morning for some cold and flu tablets to make my day more bearable.

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A nice view from my Uber this morning

Hello Massachusetts!

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We have arrived in Boston (well, Cambridge, technically).

We left our New York accommodation at 8.30 this morning to avoid the complication of trying to navigate through the New York Marathon, and then had three hours to kill at the airport. Some of the Scholars found little nooks to nap in, while others amused themselves with comparing terrible coffees with worse ones.

I found a bunch of magazines with AI features and accidentally bought them. And also one on Mars (as research for the short story I’m writing).

We had dinner at a little Japanese restaurant—which was delicious—and then came back to our hotel for a debrief and a chat about the week to come.

Boston (Cambridge) is so pretty. It’s nice to be under the open sky again and surrounded by trees. And I’m looking forward to my Harvard meetings; I’ve also been invited to a seminar discussing how search engines reinforce racism. It should be interesting!

On Thursday I’m going to sneaky sneak over to MIT for a meeting about a super cool PhD program which mashes together History / Anthropology / Science, Technology and Society. Excitement!

Oh, and the fatigue is starting to subside. Hooray!

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Trees!! I am happy.

Last day in New York

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Today we attended the Ivy Native Council Fall Summit, which featured presentations and workshops on the theme of Expansion, Intervention, Refusal: Representing Indigeneity through Art in New York City.

I left at lunch time due to fatigue, but prior to that I got to chat with some lovely Indigenous students from all over the US about our experiences and our homes.

One student from Arizona showed me pictures of her home town—the landscape was gorgeous. The colours reminded me of Western Australia, but the topography was completely different. She showed me a picture of a cedar tree and the trunk looked very much like that of a bottlebrush, though the structure of the branches and leaves was very different.

I napped in the afternoon, and then a group of us went out to a Japanese restaurant a couple of blocks away for dinner. The food was delicious and made me miss all the amazing little Japanese places in Perth. I’m keen for Hakata Gensuke ramen when I get home!

Tomorrow morning we’re taking a short flight to Boston. It looks like it’ll be a busy week at Harvard but I’m hoping to cancel or reschedule a couple of my meetings so I don’t burn out.

I’m very glad I made it to Central Park yesterday. It’s actually made it easier to notice and appreciate what little greenery is scattered around the city.

Thanks, New York, and see you again.

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The opening presentation at the Ivy Native Council Fall Summit

I made it to Central Park!

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Today was another bad fatigue day, so I ended up cancelling my meetings and sleeping instead. In the afternoon I caught an Uber to Central Park and spent a couple of hours there wandering around.

It was nice to be surrounded by nature, though even there the sounds of the city permeate.

I found a bench inscribed: “Shay’s bench—she taught us a masterclass in how to lead a life” and sat on it for a while. From there I could see people rowing on the lake, and hear their laughter through the trees.

My favourite part of the day was walking through the Ramble, probably the most natural-feeling area of the park (even though the trees are fenced off and the paths are all bitumen). According to the signage at the entrance it’s one of the best places for bird-watching in the United States. I saw a cardinal finch and got very excited! And promptly forgot to take a picture of it.

Fun fact: Perth’s Kings Park is bigger than Central Park, at 400.6 ha vs Central Park’s 315 ha. Take that, America.

After resting on Shay’s Bench I went in search of Bethesda Fountain. I did find it, but from the other side of the lake. One of the other Scholars and I stood on opposite shores and waved.

Then it was back in an Uber and to the accommodation to rest. Later, one of the other Scholars shaved my undercut for me (it was getting long and looking a bit weird). The evening has been slow and lazy. I have binged a lot of the Chilling Adventures of Sabrina on Netflix.

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View of the city skyline from a bridge in Central Park

Fatigue strikes again

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I had a lazy day today. I had hoped to go across to Brooklyn and look around, but my fatigue was bad so I mostly just rested.

I had breakfast with one of the other Scholars at a restaurant down the road. They had little pumpkins as table centrepieces for Halloween, which I still find kind of odd. So many pumpkins, so little eating of pumpkins.

After breakfast I picked up my washing from the laundromat and came back to the accommodation to rest. I went out again briefly for lunch and to investigate the Columbia book shop (it was disappointing), then came back and napped again.

I spent most of the afternoon working on a short story for the Neilma Sidney short story prize on the theme of travel. I’m nearly done with the first draft and will hopefully have it ready well before the November 19th deadline!

Tomorrow I have my last NYU and Columbia meetings, and hopefully my fatigue will be a bit more manageable so I can stop by Central Park before we have to move on to the next city. It’s a shame that I haven’t been able to do many touristy things or see much of the city, but I guess that just means I’ll have to come back! Next time I think I will spend longer here to allow for fatigue days and tourist days.

Also, I ate half a tub of Haagen Dazs ice cream. It was great.