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.

Goals For 2022 (Part 1)

I had intended to set goals at the beginning of the year but honestly, I was feeling so terrible that I couldn’t even see twenty-four hours ahead, let alone six months or a year. So I decided to shelve the setting of goals until I felt a bit more… like myself, I guess. I’m not sure I’m ready to commit to anything too… much just yet, given that I’m barely back on my feet (something that still feels debatable some days). It’s hard to plan ahead. So, I thought I’d split this post into two this year: goals for the first six months and then goals for the second. Maybe. It does feel a bit like I’m just going through the motions but maybe that’s just what I need to do right now.


GET MY MENTAL HEALTH STABILISED – Between the pandemic stuff I was already carrying around, the burnout post-MA, the disaster that was the ADHD medication, and the anxiety induced breakdown I had at the end of January (plus having been unable to see my therapist pretty much since last May), I’m one big mess. I’ve started the Moclobemide but it still feels too early to say for sure whether or not it’s the right thing. I’m starting to write again though, which is a good sign. Hopefully I’ll be back at therapy in the not too distant future, plus there are some other options for support to consider. I just feel like, until I get my head sorted – or at least a bit more sorted – my life is on hold and I hate it. I can’t have a real life until there’s some resolution here.

GET BACK TO SWIMMING – I haven’t been very mobile at all over the last few months, given how bad my mental and physical health has been, and I’m definitely feeling it. My chronic pain over the last couple of weeks has been awful – back to the levels it was last summer – and now that I actually feel able to leave the house, I really want to get back to swimming and to my hydrotherapy exercises. I want to get fitter and I want to get stronger; the hope is that, the stronger my body is, the better my life with hEDS will be.

RELEASE NEW MUSIC – I’m so desperate (in a good way) to release new music. It’s been so long since the Honest EP came out and even longer since I wrote the songs. So much has changed since then, for me as person and as a songwriter. I am working on an album and that’s my real passion project but it is going to take time and I don’t want to keep anyone waiting that long. Hell, I don’t want to wait that long. So I am working on music to release before the album and while it’s taking a bit longer because of the last few months, it is happening and it is coming.

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I don’t have an exact deadline for these goals, especially since mental and physical health don’t always adhere to any schedule you set for yourself. But I’m hoping that I can do these things – and perhaps more – within the first half of the year. Then, maybe, I can set a new series of goals that are a bit more exciting and ambitious once I’m feeling a bit more solid.

Migraines, Tooth Pain, And Blood Pressure Monitoring

So often in my life it seems, medical stuff is like waiting for a bus: weeks or months go by and then suddenly a whole slew of them show up. And that’s certainly been true of the last few months. Just as the final module of my Masters was starting, I was hit by a series of awful migraines, suffered with terrible tooth pain, and spent twenty four hours hooked up to a blood pressure monitor, a test ordered by a neurology unit in London. So it’s been a pretty hectic time…


MIGRAINES

At the time of writing this, I’ve lost approximately half of the last forty days to migraines.

I’ve had migraines before – maybe a handful a year, depending on my stress levels and the medication I’m taking – but they usually only last for a day or so before fading away. They’re not pleasant but they weren’t seriously impacting my life. But then I had one that lasted roughly four days and I ended up in A&E because, having fairly recently had the Astra Zeneca vaccine, my doctor was worried about the extremely rare side effect of a blood clot. I was sure it was a migraine but agreed to go and after most of the day there, I was released; the doctor agreed that it was most likely a bad migraine but told me to come back if it didn’t go away. And after another day or so, it did. While I was somewhat irritated about losing a day that should’ve been spent working on my end of semester assessment (despite the pain, I was pushing myself to work on it as I could, in the moments where the painkillers actually worked – I think that’s mainly why it went on so long personally), I am really grateful to all of the hospital staff. They were all great – warm, considerate, and personable – despite the somewhat alarming COVID precautions everywhere that weren’t exactly great for my anxiety. But they were really kind and gentle with me throughout my visit, making the whole experience a lot easier than it could’ve been.

I’d thought that that was it. But then, again and again, I was hit by migraine after migraine, all lasting unusually long periods of time (for me, at least). They were averaging out at about six days each time, sometimes more. That was extremely stressful, bearing in mind that I’m at the beginning of the homestretch of my Masters with this final module accounting for 60% of my final grade, and I was utterly miserable from the pain. I was also so light sensitive; at one point, even the darkest room in the house felt too bright and I dissolved onto the floor in tears, which only hurt my head more. It was awful. That was the first time we called 111 and they called paramedics. That time they determined it was, again, a severe migraine and recommended two other pain medications to try in the hope that they’d be more effective than Nurofen.

A couple of migraines later, with minimal help from the new painkillers, I had another really bad one, which had us calling 111 and they sent paramedics (both such lovely guys who fell in love with the cats and talked musicals with me while they did their tests). This migraine was slightly different: it had all of my normal migraine symptoms but I also had this almost blinding pain at the front and right side of my face. They thought it was probably a migraine but suggested talking to my doctor about having a CAT scan and/or whether there was something going on with my cranial nerves. They also had some practical, experience based advice around pain relief (one of them had personal experience with severe migraines). They said they could escort us to the hospital on the off chance that a doctor would do a CAT scan but did acknowledge that they might just take blood and keep me there while it was checked again, like my previous visit to A&E. So we chose the second option: Mum was going to go out and get the new medication option and call my GP ASAP.

TOOTH PAIN

That was the most recent migraine (at the time of writing this). As time passed, the pain in my head started to decrease, then my face, settling in my back-top-right teeth; every time they – and finally just one (after about a week) – knocked against the bottom teeth, the pain was so bad that my entire body would freeze up.

As soon as it had settled in my teeth, we’d called the dentist and they brought me in as an emergency (a few days wait rather than a few months). The dentist checked, took x-rays and saw some decay in the painful tooth, fairly close to the nerve root, and it already has a pretty big filling in it. At one point, somehow, the hEDS diagnosis came up (I was diagnosed since my last dental appointment) and the dentist said that she’s seen and heard about multiple people with a form of EDS (or who were later diagnosed with it) struggle with tooth decay, as well as being scolded by their dentists for not doing a good enough job with their dental hygiene even though they actually were; it was often the EDS causing problems, not necessarily their actions. This really is the diagnosis that keeps on giving (imagine a sarcastic snort at the end of that sentence).

Anyway, she diagnosed an abscess and gave me two treatment options: extraction or root canal therapy, which would involve multiple, multi-hour sessions that would be painful, ultimately might not work, and probably wouldn’t last into my late thirties. The whole thing felt pretty overwhelming and I ended up in tears. Extraction was the obvious choice as far as I was concerned and everyone else agreed; there seemed to be way too many downsides to the root canal option (plus it sounded horrendous and I find dental work, even fairly straightforward stuff, very distressing) and even if I was inclined to choose it, it’s the worst possible time given the end of my Masters. Even an extraction is going to be a significant disruption. I’m applying for extenuating circumstances, which both my supervisor and module leader have encouraged, so hopefully that’ll mean I end up with the same amount of time to do the work as everyone else.

So, I’ve been referred for an emergent extraction under general anaesthetic but I don’t know when that’s going to happen. They also prescribed me some antibiotics for the mean time. Now it’s a waiting game. But several days after the appointment, either the antibiotics are working or the nerve is dying or both because the pain is getting better and I feel more human. There are periods of time where I can actually ignore it, which is a huge deal considering how much pain I’d been in. So that’s definitely something to be grateful for.

BLOOD PRESSURE MONITORING

A couple of months ago, I had an appointment with a doctor from a neurology unit in London, which I believe I mentioned in this post. After spending most of the appointment vehemently telling me there was no point in getting any tests, he somewhat reluctantly offered to write to my GP, suggesting I have my blood pressure monitored for twenty four hours. It took forever to get a monitor from the hospital but finally test day came.

I had to go to the hospital where they fitted the monitor (found the right size for my arm, wrapped me up, made sure it was taking readings, looped the cable behind my neck, and used the tie from my coat to secure the monitor/data recorder around my waist) and gave me the instructions and paperwork to go along with the monitor. I wasn’t allowed to get it wet so I couldn’t have a shower while wearing it but since that’s when I usually get my blood pressure related symptoms, we devised a plan where I would go through the motions – with the shower on to create the heat and steam – so that it would still record whatever was happening to my blood pressure during a shower, as much as possible at least. The whole process was relatively stress free and the two women who sorted me out were great, warm and extremely competent but flexible to my needs. I’m really grateful to them for making it so easy.

All done, we headed home. It was a bit weird with the weight of the monitor, the too long cable getting caught on stuff, and so on but overall, it was fine. The cuff got very tight – tighter than I remembered them getting when you get a one off test – but it wasn’t a big deal and the rest of the day went on as normal. It was a bit of a struggle to get to sleep because I couldn’t get comfortable with the cuff on my arm but once I did get to sleep, the inflating and squeezing didn’t wake me up, something I’d expected to happen.

However, when I woke up, my arm was really sore. I felt like I’d been punched a hundred times in the same place, convinced the skin was bruised underneath the cuff (it wasn’t and no bruise ever emerged but damn, it was tender). I think the cuff had slipped in the night as well because I had several error readings on that second day.

I had my pretend shower and, as usual, felt shaky, dizzy, and lightheaded; having thought ahead, I’d timed things so that the monitor would be taking the reading right at the end of my fake shower. I’m intrigued to see what that reading says. That done, Mum helped me wash my hair, leant over the side of the bath; I had an online meeting and couldn’t bear the thought of doing that with unwashed hair. It wasn’t very dignified, especially with all the extra towels wrapped around me to keep the monitor dry, but it got the job done.

I wore it for the rest of the twenty four hours and then, with great relief, unwrapped the cuff. By the end, my arm felt really sore from the squeezing, plus it had started to pinch in various places at some point. There’s also that Autism-sensory-thing of wearing something constantly constricting, which starts causing anxiety after certain periods of time, like a long day in skinny jeans or wearing my retainer all day. Does that make sense? The anxiety had been building for the last few hours and it was wonderful to take it off.

Mum dropped it back at the hospital, so now I guess it’s another waiting game. I don’t know when we’ll find out the results and the conclusions drawn from them. I assume that they’ll let us know at some point, although it wouldn’t be the first time we’ve had to chase results. As I said, all we can do now is wait.

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So, yeah, hectic. At a very inconvenient time. But that’s life and I’m determined not to let it spoil the last of my Masters and this project that I’ve been looking forward to for so long. I am going to make the most of every good day I have, take the extenuating circumstances gratefully, and continue working as hard as I can.