Self Care Week (2023)

This week – from Monday 13th to Sunday 19th November – is Self Care Week, a UK-wide awareness week established and run by the Self Care Forum, a charity that aims to spread understanding about the positive impact of self care and helping people to implement it into their everyday lives. This includes the benefits of good nutrition and exercise, of taking vitamins (like vitamin D, especially for those whose health means they spend all or most of their time inside), of managing our mental health; they also guide people in making more positive lifestyle choices (to no one’s surprise, ‘homelessness’ is not on their list – fuck you, Suella Braverman), go into schools to help improve health literacy, and support people in understanding how to manage both short and long term health conditions. All good things!

I can’t speak to their understanding of neurodivergent or Autism focussed self care – I haven’t been able to find anything on their website – although much of their advice applies to all of us as human beings with the same basic needs. I thought that, in recognition of this week and the importance of self care, I’d put together a list of strategies that I personally rely on, many of which I’ve developed to help me manage as a neurodivergent person.

Obviously not all of these will work for every person, the personal ones that is: the physical ones apply to all of us to a certain degree, depending on our individual circumstances and needs. But when it comes to the personal ones, it’s unlikely that all or even most will work for everyone. But hopefully, given how many I’ve included, there will be something that’s helpful – or just worth trying – to anyone who reads this…


PHYSICAL:

When I’m struggling, I know that I need to check in with my body. I’m really not very good at noticing my body’s signals – my interoception is pretty poor, something that isn’t unusual in neurodivergent individuals – so I often have to go through this list consciously to figure out what it is my body is asking for. Others are better at this but it’s always worth checking to make sure that there isn’t a straightforward way of understanding why you might be feeling the way you do and of improving both your physical and mental state…

  1. BREATHE – When I’m struggling, I often feel like I can’t take a deep breath, something that only makes me feel worse. Learning breathing techniques, like box breathing, have been really helpful but the most effective and my personal favourite way to regulate my breath is to sing: it’s something I love doing and something I can get lost in, focussing on the words and the melody, so I don’t even notice the breathwork. I find it much easier and much more soothing to concentrate on hitting each note, rather than on counting, for example.
  2. HYDRATE – We all know how important it is to stay hydrated and yet most of us are constantly battling some level of dehydration, finding it difficult to drink the recommended amount of water. I’ve been working on drinking more and I am doing better than I used to but I still find it really hard to actually drink as much as I should. I’ve found that reminders (or an app that reminds me), a bottle that I find pleasing, and consistently carrying that bottle with me all help.
  3. EAT – Sometimes making sure that our bodies are fuelled can feel like a massive task; I certainly struggle with it and when I’m struggling, it’s usually the first thing to get abandoned. Sometimes I only manage one meal a day, as I promised my first therapist, and I try to keep her words in mind: if a cupcake, for example, is all I can manage then that’s better than nothing. You can work up from there. And it’s so important to remember that, in this world where food can feel like such a minefield, it’s totally okay – and good for your mental health – to indulge in your favourite snack, your favourite meal, your favourite takeaway, just as long as you don’t end up living on it.
  4. REST – Living in a society that is constantly ‘encouraging’ us to do more (see: telling us that we’re never working, or even trying, hard enough), most of us are constantly tired. I know I am, especially when you throw in the neurodivergence and chronic fatigue. We all need more rest. Dr Saundra Dalton-Smith has broken rest down into seven categories – physical, mental, social, sensory, creative, emotional, and spiritual – and asserts that only by fulfilling all of these can we be truly rested. After reading this article, I’ve been inspired to think of rest as something more nuanced than just whether I’m getting enough sleep or not – although that is, of course, important too.
  5. EXERCISE (OR JUST MOVE YOUR BODY A LITTLE) – We’ve all been told countless times how important exercise is for our bodies and it is, of course, true. Having said that, it’s not going to be very useful as a self care strategy if you’re hating every second of it. Finding a way of exercising that is fun and empowering is so important, both in terms of self care and in terms of exercising regularly. Because of my chronic fatigue and chronic pain, I’ve long struggled with exercise because it put such strain on my body and because I suffered so much afterwards. But then I started swimming again and, apart from the lockdowns, I haven’t stopped since. It’s a great form of non-weight-bearing exercise and it feels amazing to exercise (or just move my body gently if I’m having a bad energy or pain day) without feeling so much distress. It makes me feel able and strong, both things I haven’t felt since I was a kid, and it always boosts my mood. Plus, if I go at quiet times or even have the pool to myself, I don’t feel such anxiety about how I look in a swimming costume. Other things I’ve found really helpful are both hydrotherapy and physiotherapy. In and out of the pool, I feel more confident knowing that I have the support and advice of a trained professional, especially given how unreliable my body can be.
  6. HYGIENE – Feeling clean always feels good so, aside from the obvious physical health benefits, it’s always good for your mental health to have a shower or a bath (or even just clean up in the sink if that’s all you can manage at that moment in time – I find just washing my face can help clear my head). A bath or shower can be as luxurious or as functional as you want: it’s your headspace so you should do what’s going to help you the most. Some people really enjoy a long bath with fun or relaxing products and a book to read, while some people find that too much and prefer a simple, straightforward wash in the shower. I’m the latter – one of the symptoms of POTS makes both the heat and the standing involved in taking a shower dizzying and strenuous – but that is enough to improve my mood, to make me feel decontaminated and renewed. Those may sound like strange words to use but it’s how I feel and those feelings do, for the most part, lift my mood.
  7. MEDICATION – This won’t apply to everyone but taking your prescribed medication, or any over the counter medications that you need, (all safely and as directed, of course) is obviously very important; not only has a (hopefully) knowledgeable and experienced professional recommended you take them to improve your quality of life but missing a dose or stopping the routine suddenly can have nasty side effects. So making sure that you’re up to date on any medication can be crucial to maintaining your physical and/or mental health.

PERSONAL:

Here is a short list of the things that help me to manage when I’m struggling, when I’m feeling overwhelmed and burned out, when my mental health isn’t great. It’s a constantly evolving list, depending on what’s going on in my life and what my needs are, but this is my current list of self care strategies, ones that are the most helpful at this point in time.

  1. REDUCE DEMANDS ON MYSELF – The first thing I do when I’m feeling overly stressed and at the end of my rope is reduce my commitments and plans, giving myself time and space for my energy levels – all of my energy levels – to recover. Sometimes there are things that I can’t miss and I just have to shoulder my way through, accepting that it will then take longer to recover. And sometimes it does just take longer than others anyway. But if I don’t immediately take time for my mental health, my mental health will force me to and for likely a lot longer than I would’ve originally needed.
  2. RETREAT TO MY BUBBLE – Not long after I moved into my current house, I discovered that a really good way to reduce my stress was to spend my time in what I quickly dubbed my ‘bubble’: the front room of the house that, with the sun and the outside world muted by the drawn, light-coloured curtains, was gentle on my senses, making it much easier to work and get things done. That discovery showed me how great the sensory demands that I was experiencing were and having a space where I could reduce those demands has been pretty life-changing.
  3. CREATE SOME ORGANISATION IN MY LIFE – If I’m feeling overwhelmed and/or burned out, it’s likely that I’m trying to do too much, or that that is at least part of the problem. So, after taking the time to recover, I try to adjust my approach going forward: what commitments I say yes to, how much time I build in between commitments, how much time I’m making for important things like swimming and physiotherapy, and so on. When my schedule is more intentional and less chaotic, I find that the balance in my life never tips too far in any direction.
  4. TIME FOR SPECIAL INTERESTSResearch has shown how important it is for autistic people and our wellbeing to engage in our special interests so, although we should be making time for them anyway, I would consider it self care to make additional, deadline-free time to just immerse myself in the things I love so much. Engaging with something that absorbs you so completely and triggers such a wealth of emotion is always going to be good for the soul, I think.
  5. TALK TO MY MUM – My Mum has seen me through everything, all of the highs and lows (and catastrophic lows), and always been so supportive, regardless of whether it’s my health, my creative ambitions, or my relentless dissecting of fictional stories and their characters. I can tell her anything and often talking things out with her helps me gain a clarity that I might struggle to find otherwise.
  6. TALK TO MY FRIENDS – Sometimes I just need some time and some space to recover my social battery but, for pretty much the first time in my life, I have an amazing group of friends that I feel like I can really rely on, that I can always talk to, and that I can trust with anything. That is kind of mind-blowing to me, in a good way. Being able to talk to them – long WhatsApp chats, afternoons spent on Zoom, texting silly memes back and forth, and so on – has been so lovely. I’m very grateful to have them in my life.
  7. TIME WITH MY PETS – Spending time with my cats and/or my new puppy, Izzy, is one of the most soothing experiences I know of. They’re so present, so unaware of everything going on in the world; it’s hard not to get sucked into that, even just for a little while. Sometimes you need a break from all of the terrifying things going on in the world and their little pocket of it is the perfect place to escape to.
  8. TAKE A BREAK FROM SOCIAL MEDIA – While there are parts of social media that I enjoy, I’ve found that taking a complete break from social media has the power to rebalance my mental state and give me space to breathe, a space I didn’t realise I needed until my mental health forced me to take a break. Since I’ve been back on the apps, I’ve found it easier to recognise when I’ve had enough, when it’s getting to me, and when I need to log off. Social media can provide us with unique inspiration and access to fantastic art that we wouldn’t otherwise have seen, as well as communities that can be harder to access in the real world, but sometimes the level of toxicity or just curation can get overwhelming, making it harder to maintain your balance and sense of identity. Taking a break can feel really hard – the fear of missing an important update or losing out on an opportunity are valid anxieties – but in my experience, taking a break can help you to recalibrate and figure out where you really want to be focussing your energies. You want to be making that choice, not the algorithms.
  9. BUY SOMETHING I NEED / SOMETHING SMALL THAT I WANT – Sometimes you just need something to look forward to, whether it’s a new planner, a necklace you’ve been waiting to go on sale, or a new toy for your pet. It really doesn’t have to be complicated or expensive: if it gives you a boost to get through a hard week or a scary appointment, then it may be worth it.
  10. WRITE IN MY DIARY – I’ve long found that the process of turning my thoughts into comprehensible sentences and getting them written down somewhere safe, whether that’s in a notebook or on my laptop, to be a great source of stress relief. Not only does it help me to make sense of my thoughts and feelings and experiences but it also takes the weight off my mind: it makes me feel like, having stored those thoughts in a safe place, I don’t have to consciously hold on to them for fear of them disappearing. Not unlike having a dramatic haircut, I feel much lighter for being able to offload everything in my head.
  11. CONTACT MY THERAPIST – At this moment in time, it’s never that long until I’ll be seeing my therapist next and I can talk to her about what I’m struggling with, or we can talk through everything that’s going on if the hard stuff is feeling somewhat nebulous. And if that feels too long, I can email her, if only to get my thoughts out of my head and allow her to get a head start on where my head is before I arrive at my next session. Therapy – with a therapist I feel safe with – is a really important space for me, with everything I’ve gone through and everything I live with on a day-to-day basis.It’s really hard a lot of the time but, for the most part, I’m better going than not.
  12. GO TO A SUPPORT GROUP – This year I’ve started to attend support groups for some of the conditions I live with and for some of the experiences I’ve had, online for the most part, and although the format and the social and emotional etiquette have taken a bit of getting used to, I’ve found the experiences to be really positive and validating. I don’t always feel the need to go but it helps to know they’re there if I need some extra support.
  13. CRAFT PROJECT – Sometimes I find that having something creative to do with my hands, something without any stakes, is really could for an anxious mind and body. Over the years, I’ve slowly filled a notebook with inspiring quotes, made cards out of spirograph designs, learned origami, made both thread and beaded friendship bracelets… The concentration it requires just shuts everything else out and gives my brain a break. These obviously aren’t the only options: whatever works for you is a good option.
  14. READ A BOOK – I recently got back into reading after a very long break and I’d forgotten how completely you can lose yourself in a book. I’ve been revisiting old favourites and working through my ‘To Read’ list and it’s been so lovely to be so absorbed in stories and worlds and characters again, in a way that has the rest of the world just fading away. I’m enjoying audiobooks too, although I still prefer physical books.
  15. WATCH A FAVOURITE FILM OR TV SHOW –  I’ve consistently found that both watching new films and TV shows and rewatching old favourites are a really good way to relax. Similarly to reading, I find them to be a great way to take a break from the emotions of the real world, plus I love exploring the characters and the storytelling and so on (to a point where it might be a special interest actually); it can really boost my creativity and my joy around creating. Getting sucked into something new is always exciting and watching something old is very comforting, both of which are – I think, at least – positive emotions to dig into when you’re struggling emotionally.

I’ve been working on my self care this year and there are times when I can really see the difference it’s made: I’m really enjoying exercise for the first time in my life; I’m drinking more water than I ever have; my relationship with social media is better than it’s ever been; I feel more confident in my friendships; and so on. There are still plenty of aspects to work on but I can see the positive effect it’s had on my life.

I’d love to know how you guys feel about all of this, about self care in general and on a personal level. What self care strategies do you use? Which ones do you find the most effective? Here’s a great list if you need more ideas.

Seeking Help For Chronic Pain (Year Two)

TW: Mentions of being suicidal. 

Year two of dealing with chronic pain. Since it’s Bone and Joint Week, I thought it seemed timely to update this series, although hEDS isn’t bone related. But whatever. I needed to post this at some point and my joints hurt so this seemed as good a time as ever.

Unfortunately, very little changed during the second year. I was incredibly depressed, to the point where I was periods of being consistently suicidal, so I wasn’t capable of much. But we were also waiting for the Pain Clinic to get in touch as they’d promised to.

This post spans from April 2022 to March 2023.


OCTOBER 2022

After finally getting the referral to the NHS Hydrotherapy Department in December 2021, I tried to work that into my routine to get some exercise, strengthen my painful joints, and just improve my quality of living. It was pretty hit and miss for a while (as my post about it reflects) but around August, I found a pool that allowed me to do all of the assigned exercises and managed to work out a schedule. From that point on, I was going at least twice a week, if not more, and I could really feel the difference.

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I wasn’t pain-free by any stretch of the imagination though; I was in enough pain to significantly disrupt my life at least 50% of the time (and a lot of the time it was still there, even if it wasn’t upsetting my day-to-day life). I was getting stronger, with more stability, but still with no word from the Pain Clinic on how to manage or, dear god, get rid of the pain.


Into 2023 and we still hadn’t heard anything. I was working hard at hydro and I could feel the difference – I was stronger and I enjoyed the exercise – but I was still in pain a lot of the time. We’d asked my GP to chase up the Pain Clinic but not heard anything from either of them.

September 2023 in Photos

It’s been ages since I did a photo challenge and I’ve always really enjoyed them so I thought it was about time I revisited the practice. So here we are. This is my September, guided by the Planner & Paper photo challenge on Instagram, Life in Pockets


Day 1 – Wardrobe Change

Given that the weather hasn’t changed yet, my wardrobe hasn’t really changed. It was a really warm day but I don’t like being uncovered: it makes me feel really exposed and vulnerable. I did wear my brown ankle boots, which I don’t usually wear; they’ve been all but living in my wardrobe up until now but I like them too much to let them just gather dust.

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Day 3 – Your Choice!

My Mum bought a new toy for the cats and they were big fans, of the catnip at the very least. It wasn’t long before they were all rolling around on the rug, blissed out on catnip. It was very cute. We don’t usually get all of them inside together at this time of year; they’re usually stretched out in the garden, either in the sun or the shade depending on their preference moment to moment. It’s very cute but it was delightful to have them all back in for while, even if only for a little while.

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Day 4 – Listening To

I’m obsessed with The Good Witch by Maisie Peters and have been listening to it on repeat since it came out. I absolutely love pretty much all of them – picking a favourite is actually impossible – but I’ve been having a great time singing along to this song, ‘BSC,’ recently. Maybe because there’s a certain person I’ve been talking about in therapy that I’m reminded of when I sing some of the lyrics to this song. I love the chorus: it’s such a true, relatable, hilarious-but-still-kind-of-heartbreaking statement so succinctly put. Her songwriting is SO clever and I always lose my mind over the genius lyrics like, ‘Mister “I don’t want a label” / You made me ‘Little Miss Unstable.” I also absolutely love the bridge: ‘I am unhinged / I am scaling all these walls I’ve gone within / I am both Kathy Bates and Stephen King / I can write you out the way I wrote you in.’ That last line is so empowering and I think that being a writer myself makes me love it even more. ‘I am unhinged’ is just hilarious and so relatable and ‘I am both Kathy Bates and Stephen King’ is so freaking clever. I could honestly talk about these songs for HOURS.

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Day 5 – Cozy

I didn’t take a picture for this one but I wanted to include it here because I find it so hilarious. Here in the UK, we’re experiencing a heatwave and oh my god, the idea of cozy is just so far from my mind; all I want is to cool down. I’m melting in this heat. And suffocating in the humidity.

Day 7 – Reading

I started out listening to this book on my phone, passing the time on a long drive, but ended up continuing it in physical form; I prefer physical books to audiobooks for reading but I can’t deny the convenience of audiobooks when in the car or when swimming, for example. I really enjoyed This Is Going to Hurt so I was keen to read Undoctored. So far I’m really enjoying it; I really like the way Adam Kay writes and he’s utterly hilarious.

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Day 8 – On The TV

My Mum and I are currently watching the second series of Annika. My whole family LOVES Nicola Walker and I would honestly watch the worst show ever just for her. This certainly isn’t the worst show. It’s pretty lighthearted most of the time with some heavy moments and Nicola Walker’s character, Annika, is hilarious and awkward in a really endearing way. She’s a mess but all of her relationships with her family and friends and colleagues are really lovely and I honestly never want this show to end; it’s really nice to see her play a character who isn’t deeply and consistently traumatised, as most of her characters seem to be. It also seems like a really fun show to be on, which just adds to the enjoyment of it.

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Day 10 – Sunday’s Are For…

In theory, I like Sunday to be for collecting myself for the coming week, recuperating, and doing my favourite things. Having said that, I’m usually frantically busy trying to catch up with things from the previous week before they spill into the next week. This Sunday, however, I was able to just dedicate my time to practicing for the show I’m playing on Wednesday and spend time with Izzy, our brand new puppy: playing when she was awake and snuggling as she slept. It was a very pleasant day.

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Day 12 – Below

I had no idea what to do for this prompt until we got Izzy. I keep picking her up like this because she’s just so adorable and so chilled out, when she’s sleepy at least. And she looks so ridiculously cute. As she always does. All the time. It’s very distracting.

Day 13 – From Behind

I mean, with ears this spectacular, how could I take a photo of anything else for this prompt?

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Day 15 – Boots

My favourite pair of boots, and the ones I wear practically everyday, are Sorel Joan of Arc lace up boots. They’re the same boots that Daisy Johnson in Agents of Shield wears a lot, especially during Season 2. I always thought they looked super cool and the fact that she was wearing them was an added bonus. They’re really comfortable, they look cool, and I feel like a superhero when I wear them. Is it any wonder I wear them all the time?

Day 17 – Time Alone

Right now, all of my ‘alone time’ is actually ‘Izzy time.’ I’m either playing with her and keeping her occupied so that she doesn’t get into anything she shouldn’t or I’m sitting with her while she naps. Sometimes I try and get stuff done while she sleeps but sometimes all I can do is sit and adore her; the fact that she’s actually real, that this absolutely gorgeous little creature is mine to love is still kind of overwhelming and I just find the time disappearing as I stroke her and cuddle her.

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Day 18 – Something Brown

I could’ve easily stuck another puppy picture here but I thought I’d try and come up with something a little more interesting, for one day at least. There’s no such thing as too many pictures of this puppy. So here is my beloved guitar, an electro-acoustic Taylor that I got during my first year at university. It has the most gorgeous sound and I honestly have no desire to ever get a new one, even if I could afford to get a ‘better’ one. This one just sounds and feels so beautiful; it feels like an extension of me, and of my songwriting.

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Day 19 – Something For You

A couple of months ago, I ordered this necklace from Etsy. I’ve been looking for one like it for years and having finally found it, I didn’t want it to slip away again – I’ve let that happen far too many times. I have such anxiety around money that I struggle with spending it on myself when there isn’t a ‘productive’ purpose (like learning a new skill) but I’ve been working so hard at my physiotherapy and hydrotherapy that I said, ‘fuck it,’ and bought the necklace. I can get my head around a little reward for over a year’s worth of hard work.

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Day 20 – Selfie

I did it for the challenge but I really don’t like taking selfies. I can just about manage selfies if they’re with people or as part of a special event or at a specific place but I’m rarely happy with how I look in them. I think a big part of that is that I’m masking really hard in order for the photo to be a good one and so I think I just don’t end up looking like myself. I like candids because they’re in the moment and honest and real. But, as I said, I have obliged for the challenge.

Day 23 – Lazy Afternoon

Lucy was certainly having a lazy afternoon (while I was busy working away). Of all of the cats, she’s the most unfazed by Izzy’s appearance: she’s not thrilled and they’re not playing (yet?) but Lucy will chill out in the same room and will engage with her to a limited extent. Having said that, she’s not shy about giving Izzy a swipe if Izzy gets overexcited and ends up swerving too close to her. The other cats have barely managed five minutes in the same room; I have to hope that they’ll get used to her over time, especially as she learns what to do and what not to do. Anyway, as well as Lucy’s handling the Izzy situation, she’s happiest when Izzy is downstairs and she can just relax without having to worry that Izzy might bound over to her at any second. So this was a thoroughly blissed out moment, unbothered by a tiny canine.

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Day 25 – 11am

This is my physio set up, just before I ran through my personal exercise plan. I feel very lucky to be able to work with a physiotherapist and not just a physiotherapist but an excellent physiotherapist who has a really good, working understanding of Hypermobile Ehlers-Danlos Syndrome. I’ve been working with her for a few months now and have a series of exercises that take about fifteen minutes to do, trying to strengthen and stabilise my body. As of earlier this week, we cut one exercise and added two new ones for my elbow and shoulder because I’ve been experiencing serious pain in them for a really long time now. So I’m still getting to grips with those. Although, having said that, my arm has been sore as a result of my recent COVID jab (my fourth, I think) so I haven’t managed as much as I usually do. If it follows the same pattern as the others, it’ll be fine in a couple of days and I’ll be able to work at normal capacity again.

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Day 28 – Book Review

I love Trista Mateer’s poetry and I loved her previous book, Aphrodite Made Me Do It. I loved Artemis Made Me Do It even more. I read it in less than twenty-four hours, folding a ridiculous number of page corners. Her poetry is so visceral, like the earth just spits it out; it’s beautiful and delicate and brutal and fierce and I feel like I could write a song inspired by every poem. I really loved it and I can’t wait to read the next one in the series.

Day 29 – Weather

My birthday was on the 29th and part of that involved doing this really amazing Equine Facilitated Learning session about building confidence and assertiveness so I spent the morning in a field, working with three gorgeous horses. It was a bit chilly but a beautiful day with warming sunshine and big blue skies. It was a good day.

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Day 30 – Self Care

One of the things that makes me feel like my best self – physically, mentally, and emotionally – is swimming. And, near where I live, the pool does this awesome thing on weekend evenings where they turn off the main lights and place a few lanterns around, basically lighting the space with the pool lights. They keep the number of people to two per lane so it never feels crowded or cramped and they play music to minimise the potential echoes in the room. All in all, it’s a really amazing way to swim and such a soothing experience, especially for someone like me who often finds swimming pools overwhelming and overstimulating. I’ve always loved swimming so I’ve put up with it, trying to find the quietest times to swim at whatever pool I’m going to but this is just amazing. It’s my favourite place to swim and I never get tired of it. I feel very lucky to have discovered it and to have pretty regular access to it.

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I didn’t manage to take photos every day: sometimes I was too busy, sometimes I forgot, and sometimes nothing about the day matched the prompt (like ‘cozy’ in a heatwave or ‘fall leaves’ when we don’t have anything resembling autumn yet). I also didn’t do the bucket list because I find that they trigger my anxiety at the moment. But on the whole, it was really fun to document my days with photos again. I have a fair amount of fun things coming up over the next couple of months so I wouldn’t be surprised if I find myself doing another challenge sooner rather than later.