An Object At Rest (Video)

During a recent Poetry Orchard writing workshop, my gorgeous friend, Blossom – one of the three lovely facilitators – shared this video as one of the discussion pieces, which I thought was very fitting for the theme of ‘rest is rebellion.’ I was so taken by it and I’ve sent it to so many people that I thought I should share it here as well. I love the animation style and the score is beautiful; it’s such a lovely, meaningful piece…

It’s funny how emotionally invested you can become in a fictional piece of rock in such a short space of time, isn’t it?

I think this short film says so much about how hard it is to find rest – real, active rest – when the world around you is in constant motion; even when you try to stand still, there are always external factors trying to force you into motion. And that’s why it’s so easy to not rest properly, to not rest in a way that actually recharges you. I’m finding more and more that I have to build rest time into my days – whether or not I actually take that time is still up in the air but I am working on it. Our bodies, our brains, our nervous systems… rest is so vital and I think that that’s (somewhat weirdly) really easy to forget. But we live in a really busy and emotionally taxing world and if we don’t choose to rest, our bodies will choose for us and that can be really hard to recover from.

What do you think? Did you like the short film? Have you sat with your body recently and checked in with how tired you feel? Thought about how you might build in more time for rest? What’s keeping you from resting? How could you change that and how might you benefit?

A Four Month Detour…

I really didn’t mean to abandon this blog but the last four months have been completely miserable, healthwise.

Less than a week after I last posted, I started experiencing what felt like electric shocks in my lower back. It was so painful that, at times, all I could do was scream. Even when the electric-shock-like spasms weren’t actively happening, I was in – quite possibly – the worst pain I’ve ever experienced. And given my experience with chronic pain, that’s saying something. It was horrendous, especially as the painkillers that usually give me some relief weren’t having any effect. Eventually I managed to get some stronger painkillers from my GP and they were so strong that, for the first few days, I could barely keep my eyes open: I was asleep for around twenty hours each day. Thankfully, that did wear off after a while but I still felt slow and blurry while taking them.

It was a completely new kind of pain for me and while we had a few theories from the network of health professionals I’ve worked with, we still didn’t know what was causing it, how long it would go on for, or if it was a permanent change. The massage therapist I’ve done some work with – who has both personal and professional experience of Hypermobile Ehlers-Danlos Syndrome and chronic pain – was a godsend and thankfully, my Mum found a new physiotherapist nearby who had professional experience with hEDS and who was able to come to the house to see me. He was fantastic: he was thoughtful and thorough and explained everything with great care (sometimes multiple times); he really listened to me and took my priorities into account when choosing the exercises for me to do; I felt like he actually cared about me as a whole person, which has not been a common experience. He assessed me and felt that I had a pinched nerve in my lumbar spine, which typically heals in about eight to twelve weeks. That felt like an interminably long time but I was relieved to hear that he expected the pain to go away. He gave me some very gentle exercises to do as I felt able to, with the goal of strengthening the muscles in my back to support my especially hypermobile lumbar spine (and hopefully reduce my chronic pain). Between the pills (despite the side effects), the massage, the physiotherapy exercises, and the time that I was forced to take to rest properly, the pain finally started to decrease and I was able to slowly increase my mobility – I’m still working on that.

Unfortunately that was only the first part of the story. In early October, I started to struggle with multiple symptoms that I’ve rarely experienced, including stomach pain, nausea, acid reflux, and difficulty swallowing. It made eating so difficult that I could barely keep any food down and it made sleeping difficult because I felt worse when I was lying down. I felt awful but my Mum had been unwell a week or so earlier and so I assumed that it was the same thing and would pass relatively quickly; I thought I just had to rest and wait it out, like I often do with a seasonal illness or the symptoms of my chronic illnesses. But that didn’t happen. The symptoms got more intense until I wasn’t eating at all – sips of water were all I could manage – and the POTS symptoms I experience everyday had become debilitating. I hate going to the doctor but if there was ever a time, this was it.

I managed to get an appointment with one of the GPs pretty quickly – not my usual GP but that isn’t unusual and I did manage to get an appointment with her for later in the week – but when I explained what was happening, this doctor said that there wasn’t time to explore each of the symptoms so she questioned me about the difficulty swallowing, prescribed me a medication, and sent me on my way. I was deeply unimpressed and had no confidence in her diagnosis or the medication: treating one symptom when several are presenting at the same time… that seemed very unlikely to help whatever was causing the multiple symptoms. I’m passionate about the NHS (and about improving it) but it’s not exactly straightforward when I’ve been repeatedly invalidated and mistreated by medical professionals.

I didn’t have time to even take the medication before the stomach pain got so bad that I couldn’t move. We ended up calling 111 and their recommendation was to call an ambulance and head to A&E. The idea of being in an ambulance – as an already overstimulated autistic person – felt horrific and I almost had a meltdown; I didn’t know what I was supposed to do when I felt like I could barely move. Eventually my Mum had to all but drag me into a cab to go to A&E. For once, being autistic was a help rather than a hindrance because the receptionist moved us straight from the initial waiting room into the actual A&E department where people were being assessed and treated. We still had a considerable wait ahead of us, which felt incredibly long given how much pain I was in. It wasn’t exactly a restful environment either: besides the patients and nurses coming in and out, there were paramedics and police and one young woman who cried the entire time she was there. If I hadn’t been in so much pain and so overstimulated, I might’ve been impressed – and a lot more sympathetic. But I was running on empty and on the edge of sensory overload and all I wanted was some quiet; it was a rough night – for everyone clearly.

After a couple of hours, several different nurses did a series of tests, including taking blood and doing an ECG (during which my cannula from the blood draw was jostled, leading to the bruise pictured below – that hurt for a while). A little while later, another nurse gave me a low dose of morphine that did, thankfully, slowly bring my pain level down. But after that, we were left for several hours; even when we were the only people left in the little waiting area, no one came for us or even gave us an update. I was starting to think we’d been forgotten about.

When a doctor did finally call my name, he didn’t have any real answers for me. He did at least have a reasonable understanding of hEDS and how it can cause strange or skewed test results: a hEDS body does not react to anything the same way a non-hEDS body does, surprise surprise. So there was no obvious explanation for my symptoms but he prescribed antibiotics and recommended getting a referral to the hospital’s Gastroenterology department if the symptoms weren’t resolved by the antibiotics. I don’t love the approach of just throwing medication at a problem and hoping it helps but I was desperate and that was the only option being offered.

(Left: the bruise left by my cannula, having being knocked during A&E tests // Right: me, asleep on the sofa the day after the night spent in A&E with Izzy keeping me company)

We got home around seven and I was asleep the moment I lay down on the sofa. I was just completely exhausted. I took the antibiotics I’d been prescribed but then, when I saw my actual GP, she was surprised by how high the dose was, adjusted it, and prescribed another antibiotic, as well as sending the referral to the Gastroenterology department at the hospital. Again, it wasn’t exactly reassuring since we still didn’t know what the actual problem was and I was starting to spiral a bit about the possibility that this was more than just a passing illness, that it was something much more serious that was getting overlooked (with the potential to lead to an even more debilitating outcome). But I tried not to go down that rabbit hole. I was trying to at least give the various medications a chance to work.

Over the next few weeks, I just lay on the sofa and tried to eat when I felt able to. Between my body trying to fight whatever was going on and the fact that it was trying to function on very little fuel, I was barely able to do anything. I was forced to rest, to literally just rest; I couldn’t even do the most passive of activities. I was physically, mentally, and emotionally exhausted. My body and my brain were barely functioning: a good day consisted of a shower and watching TV (and eating what I could). But the medications started to work and, very slowly, I started to feel better and the symptoms started to decrease in intensity, even if I was still building back up my capacity after so long with so little fuel in my body. And then, just as I was finishing the courses of medication, I started to feel actually well again and I don’t think describing my mood as “overjoyed” would be an exaggeration. Eating went from being a struggle to being joyful (a word I don’t think I’ve ever used in the context of eating) and I was sleeping well, not only for the first time in weeks but in months: I was feeling so good that it felt more than a little surreal but I wasn’t complaining. It was a huge relief after eight weeks of feeling so terrible.

But less than a week later, the symptoms started to reappear and I started to feel really unwell again. I had bloodwork done (which had been ordered way back when I’d first gone to the doctor) but all of the tests came back fine or inconclusive again. I was wondering if the medications had been treating just the symptoms and not the underlying issue, which made me deeply anxious about what that underlying issue could be. I wasn’t sure what the next step was supposed to be but I’ve had a lot of conversations with a lot of different people in my various circles and, long story short, it seems that these digestive issues were a delayed response to the increase of one of my long term medications: some (professionally guided) experimentation has proved as much as is possible that my digestive system can’t handle this medication over a certain dosage so I’m currently taking a break from it (which is something you can safely do with this medication) while getting my food routine and some of my energy and strength back. After Christmas, or maybe the New Year, we’ll reassess and I’ll likely start taking it again at the lower dose since I had had a positive experience with it until that final dosage increase.

So that is where I’ve been: too sick to do anything, too sick to even write a blog post about being sick. When I say it’s the most unwell I’ve ever felt, I’m not exaggerating. I’ve dealt with a wide range of symptoms and various levels of pain during my life but never have I been so ill, in the way we typically picture illness. I’ve dialled everything right back to absolute basics and I am starting to feel a bit more normal, despite a few bumps in the road. Fingers crossed, I’ll be feeling more like myself again by the time the New Year rolls around…

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.