Everyday Essentials

Given my health situation – living with multiple chronic illnesses that require daily management – I thought it might be interesting to make a list of the things I need and use everyday and maybe if any of you guys live with chronic illnesses, you could compare it to what you use. Are these things helpful to you? Might they be? Are there things that are helpful to you that aren’t on this list?


GLASSES – This is a pretty obvious one. I can’t see three feet in front of my face without them; I am incredibly short-sighted. Both of my biological parents are or were short sighted and I believe that certain forms of Ehlers Danlos Syndrome (EDS) can affect your eyesight. Regardless, I’m not going anywhere without my glasses.

MEDICATION – I have certain medications that I have to take everyday, as well as some that are situation dependent. The most important are my anti-depressant, Phenelzine, and the beta-blocker, Propranolol, and I really feel it if I don’t take them; while it took them a while to take effect at the beginning, it can through everything off course if I miss a day. So taking your meds… very important!

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PAINKILLERS – Okay, this isn’t an everyday occurrence but it’s very common, especially at the moment (I hurt my back about a month ago – a story for another time). I have them on me all the time and I regret it if I don’t. Pain can be so debilitating and if I don’t have something to manage them, if only to get home, then I’m in really trouble. I also get migraines that absolutely incapacitate me so having the pills that help with those is vital. I often feel like a walking pharmacy but I’ve learned the hard way – several times – that it’s better to be prepared.

LOTS OF WATER – Generally, none of us are drinking enough water but as a person with Hypermobile Ehlers Danlos Syndrome (hEDS), I’m sure I’m not, as hard as I try. When I was diagnosed, the recommendation was that I drink more than double what a person without hEDS is supposed to drink (x); I’ve been trying to build up my water intake but it’s a slow process. I also have Postural Orthostatic Tachycardia Syndrome (POTS), which often occurs with hEDS, and includes symptoms like dizziness, light-headedness, swelling in the legs after standing for short periods of time, palpitations, fainting, and more, all of which can increase in intensity when a person is dehydrated, after exercising, or during hot weather (I want to write a more in depth post about all of this when I have more time). Dehydration has also been linked to an increase in pain sensitivity (x). Increasing water intake has proven to help POTS symptoms so I’m doing my best to always have water with me (or cordial if the taste of water becomes a struggle, something my nutritionist okayed, given that I’d still be getting the fluids) and I think it’s helping me to drink more (x). It’s surprisingly hard though, to drink that much water.

MY PHONE – I know that many people talk about needing breaks and time away from their phones but, in general, having my phone around is more helpful than it isn’t. I find social media pretty triggering for my anxiety so I rarely find myself scrolling through Facebook or Twitter or Instagram (and I hate TikTok more than I can even articulate) whereas I find the apps for setting alarms and timers helpful, Duolingo really good for my anxiety (and mental health in general), and the Notes app vital to writing down thoughts and ideas to follow up on. I do find it stressful that it means anyone has access to me, can contact me whenever they want, but then Airplane Mode is right there… But generally, my phone is more helpful than not.

MY BULLET JOURNAL – Between my ADHD and my general anxiety about being organised, my bullet journal (or what began as a bullet journal and has evolved into a more personalised version of the system) is all but permanently attached to me. It has my list of commitments, the list of things I want to get done during the day, and anything else that might be relevant, like stuff to do with the cats or the house. I honestly don’t know what I’d do without it.

FIDGET TOYS – My hair pulling has been particularly bad recently (plus I’ve seriously struggled with chewing the callouses on my fingertips and tearing at a scar on my face) and after years of dealing with it, I have a slightly ridiculous collection of fidget toys that I rotate using as the urge to pull varies; sometimes certain fidgets are more effective than others. So I usually have at least within reach, whether that’s wherever I am or in my bag.

NOISE-CANCELLING HEADPHONES – Having had some very unpleasant experiences with just how loud the world is (you may remember this particular disaster), I got an amazing set of noise-cancelling headphones that have made navigating my hometown, London, transport systems, etc so much easier. I’ve recommended them to multiple people and those who got them have agreed that they make life – and all of its noise – a lot more manageable.

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FACE MASK AND HAND SANITISER –  I know that, for a lot of people, it feels like the pandemic has ended but, for many, many others, it hasn’t. I know immunocompromised people, those struggling with Long COVID, people who are still getting COVID and getting seriously sick so it certainly doesn’t feel over to me. If I’m out, I’m pretty neurotic about hand sanitiser and wearing a mask; I’m not perfect and I do sometimes forget, especially if I’m feeling overwhelmed in a social situation and there’s no prompt of other people wearing masks, but I’m still pretty on the case about it all.

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A HIDDEN DISABILITIES SUNFLOWER LANYARD – I’m not sure when I first got my sunflower lanyard and I can’t honestly say it’s changed my life but there are certain places that it does make life easier, like at airports and concerts (and getting support in those sorts of places is so important). Mostly I wear it when travelling around London because having a big ‘autistic’ label around my neck reminds people to take care and hopefully be a bit more aware of what they’re doing and what’s going on around them. I’m sure there are people who see it and it makes them uncomfortable or contrary or belligerent (because, in my experience, those people tend to be everywhere) and I think there are places where it probably makes me more vulnerable but, on the whole, it tends to be helpful if I use my judgement.

JOINT SUPPORTS – Because of my hEDS, I struggle with a lot of pain in my joints (the gift that keeps on giving) so I have a handful of different supports and braces. I mainly use them for my knee and for my wrists, but I also have one for my back. They not only really help with my stability – something I’m struggling with more and more – but, as with my sunflower lanyard, they remind people that I am kind of fragile and that they need to be careful around me, especially on trains and the underground etc.

POLARISED SUNGLASSES – The last time I went to get new glasses, I mentioned that I have hEDS and the optician recommended getting polarised sunglasses because they can help with light sensitivity, something that many people with EDS struggle with: our eyes are sensitive can get really tired because they are made up of 80% collagen, which is – as we know – what EDS negatively affects. And if you can reduce the strain on your eyes – which these glasses do, even if you’re inside but it’s still very bright – then you can hopefully reduce the chances of developing problems with your eyes (again, EDS: the gift that keeps on giving).

LIP BALM – A common symptom of multiple types of EDS is sensitive skin and that can manifest as dry lips (and cracked lips that take ages to heal) so I try to always have a good lip balm around. My personal preference is the EOS Crystal Lip Balm in Hibiscus Peach, which I’m not totally sure they make anymore but it’s still available through various online stores. But it’s their crystal lip balms that are best for hydrating your lips (but it’s worth reading this article because some people have had allergic reactions to certain ingredients); the previous, more waxy versions were nice but I didn’t find them to be super effective.  This one helps my skin recover really quickly (and stay hydrated) and I can barely feel it on my lips, a plus considering that the sensory experience of make up and skincare can be really difficult for me. But there are a lot of great ones out there; I’ve used several from The Body Shop that I would recommend too.

CBD GUMMIES – Over the last couple of years, my sleep schedule – for the most part – has been awful. Most nights I was getting a fractured few hours and then there were nights where I didn’t sleep at all. It was horrible and it just made my mental health even worse, which was pretty impressive given how bad it was when my sleep was at its worst. I felt like I’d tried every strategy ever suggested, including some pretty strong prescription sleeping pills; they worked-ish but I suffered from some pretty miserable side effects for not much reward. I’d always been vaguely resistant to trying CBD based products for some reason – I’m not really sure why – but I was desperate and ended up trying a few different types of CBD gummies. Within a few days, my sleep was deep and reliable again. Months later, it’s remained pretty good. Plus it’s helped me avoid relying on prescription pills, which I’ve had to do in the past even though it’s not generally advised (this was with the approval of my doctor); taking them every night can increase your tolerance and so they stop working and no one really knows what the long term effects are, although some people become addicted and can experience symptoms like hallucinations. So avoiding that is definitely a pro on the pro-con list. Research is still being done around CBD but so far it seems that the only problems are certain drug interactions, which would just involve a conversation with a doctor. None of those interactions were a problem for me so I’ve been taking them consistently ever since and my sleep has been so much better. They’re a constant presence on my bedside table.


So I hope that was of some interest, at least. As I said in my introduction, let me know if you use these things; let me know if you use other things; let me know if there are things that might work better than the ones on this list! Over to you!

#ToHelpMyAnxiety

TW: Mentions of self harm and Trichotillomania. 

So the theme set by the Mental Health Foundation for Mental Health Awareness Week this year was anxiety. They pushed the hashtag #ToHelpMyAnxiety to raise awareness but I didn’t see it once on social media so I decided to write a whole blog post on the topic, on what helps my anxiety as well as what I’ve heard from others about what helps them. I ranted recently about how people engage with Mental Health Awareness Week, and awareness days in general, but I do think that sharing coping mechanisms for anxiety is a useful thing to do and a good use of those days.

I live with very severe anxiety, so bad that nothing I do actually banishes it, but I have found certain things that help to manage or reduce it. And I’ve spent a lot of time talking with friends and acquaintances about anxiety, discussing how we all try to cope with it. So I have a lot of tried and tested methods that have all worked for at least one person and therefore will hopefully be useful to at least one of you. If any of these ideas help just one person, then it’s worth the work to compile them. (Some of these have been pulled from my experience as an autistic person but many of them are useful for anxiety so I figured it was worth including them.)

I do think it’s worth mentioning that not all of my coping mechanisms are good, healthy ones. I’m focussing on the healthy ones because those are the ones we should all be aspiring to practice but I felt it would be remiss to not even mention them.


General Tips:

  • Maintaining a healthy lifestyle – Getting enough sleep, eating healthily, moving your body, and, in some cases, taking additional supplements (I am not knowledgeable about this, nor qualified, to give advice but I do personally take supplements on the advice of a nutritionist, one who has experience with my health problems) are all important in managing anxiety. Not getting enough sleep or not eating enough can drastically increase anxiety, as you’ll know if you’ve struggled with anxiety in the past (and present).
  • Make sure I’m breathing properly – I know people who swear by deep breathing exercises but I don’t usually need to go that far; I often find myself breathing very shallowly and need to reset, take a deep breath and remind myself what normal breathing is. At home, singing is really useful for this, I think because it forces me to control my breathing, plus it’s something I love to do.
  • Consciously relax my body – When I’m really anxious, I’ll suddenly find my body so tense that I’m like a coiled spring. I have to focus and physically relax my muscles – drop my shoulders, unclench my fists, uncurl my toes, etc – sometimes multiple times a day. I usually find the tension creeping in again but making the effort to relax over and over does seem to help.
  • Avoid loud noises – Loud noises are a serious trigger for my anxiety so I try to avoid them as much as possible, although some environments seem to be exceptions, like concerts for example. Most of the time noise cancelling headphones do the trick so I’m very grateful to have such a great pair.

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  • Avoid certain fabrics – This is probably more Autism anxiety than general anxiety but I thought it might be useful to someone. The sensory irritation of some fabrics (I particularly struggle with acrylic and polyester) slowly overload my brain until my anxiety makes it impossible to concentrate. So sticking to safe textures, like cotton, is a good strategy, even if it does mean I miss out on cool clothes occasionally.
  • Fidget toys or fidget jewellery – We all stim (shortened from self-stimulatory behaviour) to some degree, both neurodivergent and neurotypical people, and one of the most common reasons for stimming is anxiety. Many stimming behaviours aren’t harmful (and many autistic individuals enjoy their stims) but sometimes they are and sometimes they can draw unwanted attention. This is where fidget toys and fidget jewellery can be really helpful because it fulfils the same need as stimming but allows that behaviour to stay under the radar, if that’s what you want. I’m not ashamed of being autistic or of my stimming behaviours but some of them are harmful and need redirecting and some of them are such that I don’t always want them to be people’s first impression of me; I prefer to choose when I reveal that sort of information but still need to stim in the meantime.

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  • Creating something with your hands – I’m not very artistic, not in the making of physical art anyway, but I do find it soothing to make things with my hands, whether that’s doing origami or making friendship bracelets. This is apparently a very common thing, as it allows our brains to essentially switch off and take a break from the relentless noise pouring in.
  • Bullet journalling – Organising and updating my bullet journal (or my version of it that’s accidentally evolved over the years) and to-do list help me to keep track of what’s happening so I don’t have to worry that I’m forgetting something.
  • Learning a language – This is something I’ve learned over the last year. I started using Duolingo and found it to be a really good way to distract myself when I was anxious, plus I was learning something new at the same time. I would like to use the language and, in theory, I will but even if I don’t, I did manage to reduce my anxiety, learn a new language, and feel better about myself.
  • Socialising (to the best of my ability) – Depending on what’s best for you, a certain level of socialising can be really good for managing anxiety (especially if you have someone to talk to who understands what you’re going through). It’s a bit of a balancing act because it can help up to a point and then become overwhelming, but if you can walk that line, you can find relief from anxiety in both socialising and alone time (as many of us know from experience, too much of either can just make the anxiety worse).
  • Therapy – If your anxiety is ongoing or seriously impacting your life, therapy might be something to consider. I talk about my anxiety in therapy a lot: what I’m anxious about, what I can do to mitigate it, short term and long term strategies, what else it might be connected to. I’ve learned a lot about myself and my anxiety and although some anxieties are impossible to avoid, I have learned how to manage some of them.

At Home:

  • Blanket – Unless it’s absolutely sweltering, I usually have a blanket draped over my legs and lap. It’s not a weighted blanket because those are just too much for me but a light blanket provides just enough weight to be calming, to be grounding.
  • Controlling the temperature – I’m more able to handle my anxiety when I’m comfortable, regulating my temperature included. So that I don’t have to adjust the whole house, I have a little electric blanket that I can sit on if I’m cold (also great for my chronic pain) and an amazing fan (noiseless because the noisy ones can trigger my anxiety) and that way I can adjust the temperature really easily as I need to.
  • Burning my favourite candle – When I’m feeling anxious, burning my favourite candle (my personal choice is the pink pepper grapefruit candle from The Candle Bar, but really any pink grapefruit candle will do) helps to relax me; I feel safer and calmer and like I can breathe more easily.
  • Stroking my cats – It’s been scientifically proven that spending time with animals lowers our stress levels and I absolutely know it to be true from my personal experience. Being around my cats relaxes me and it’s only when I’m away from them – even for only a few days – that I realise just how much they reduce my anxiety. So being with animals, if possible, is definitely a good tactic and fortunately, these days, there are many ways to do that if it’s not possible to own a pet yourself.
  • Favourite movies and TV shows – When I’m having a bad day, returning to my favourite movies and TV shows (even if I have to work on stuff while I watch them) is very calming. The familiarity and nostalgia of those stories and characters makes me feel safe, pushing the outside world and all its stresses away for a while. As psychologist Pamela Rutledge says, “It can become really therapeutic, especially if you are feeling anxious. Watching the same piece multiple times reaffirms that there’s order in the world and that it can create a sense of safety and comfort on a primal level.”
  • Diary writing – I feel like, with every day that passes, I’m carrying around more and more memories and the longer I go without writing them down and putting them somewhere safe, the more anxious I get. This is where my OCD chimes in. Complying with that need to write everything down may feed my OCD but it also brings me huge relief, both in that it relieves the weight that I feel like I’m carrying – and the anxiety that I could forget those memories and that they’d therefore be lost forever – but also in that it helps me process what I’ve been going through; the act of writing out my thoughts and feelings helps me untangle and make sense of them. I couldn’t cope without it.

Out and About:

  • Have a well packed bag – It often ends up being a little over excessive (and heavy) but by making sure I have everything I know I’ll need (or might need), I can avoid a lot of anxiety and uncertainty; it’s my safety net. The contents depend a little on where I’m going but I usually have my phone (and portable charger so that I’m always able to reach someone if I need to), my noise cancelling headphones, my ID, my wallet (and travelcard), my keys, my sunflower lanyard, a bottle of water, a face mask (and a spare), hand sanitiser, medication (for anxiety and pain), my bullet journal, a fidget toy, and something to distract myself with if necessary, like a book. I think that’s everything. But if I’m prepared for everything, I’m less likely to end up in a situation that triggers my anxiety because I already have a solution.
  • Exercise – I think there’s a bit more nuance to this one than is often made clear. Because of my mobility and chronic pain problems, exercise is hard for me and swimming is the only thing I can reasonably do at this point, which isn’t something I can just get up and do. But I do love it and I do find that it makes me feel better. I do agree that moving your body is helpful but I think that you get more out of it when it’s a form of exercise you enjoy, rather than exercise for the sake of exercise. Some of my friends love running and find that really centering and yoga is often recommended as a good choice of exercises, particularly because of the relationship you develop with your breathing, another well known coping mechanism for anxiety.

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Other People’s Tips:

  • A change of scenery – Sometimes we can just get stuck in the spiral of anxious thoughts and one way to break that spiral is to literally move to a different place. Our brains are super sensitive to changes in our surroundings and new experiences are closely linked to reward and positive feelings.
  • Gardening – While gardening is not something that helps me, it’s something that many people find really helpful, whether that’s tending a full garden or looking after plants and window boxes. My Mum loves to garden and when I asked her why she finds it relaxing, she said that part of it is that she’s outside and away from work, but also that it requires all of her attention and that there’s always progress to be made. I can definitely understand that even if plants specifically aren’t my thing.
  • Reduce caffeine – I don’t understand the science, but it has been scientifically proven that reducing caffeine reduces stress. As far as I can tell, caffeine has no effect on me at all – energy-wise, at least – so I have no idea if it affects my stress levels. But if you’re ingesting a lot of caffeine, it might be worth cutting down your intake and seeing how you feel.
  • Listening to music – Some people find listening to music deeply relaxing and it’s true that, as an activity, it lowers your heart rate and cortisol levels. Personally, it might physically relax me but since music is my job, it’s not very relaxing for my brain. I think they call it ‘a busman’s holiday.’
  • Reading – Reading is also proven to lower your heart rate and ease tension in your muscles so it’s a technique worth trying but, of course, reading isn’t everybody’s cup of tea.
  • Puzzles – My friend loves doing puzzles and, as it turns out, puzzles actually help release dopamine in your brain, which is why we feel good when we do puzzles. I prefer doing puzzles with people rather than doing them alone and I’m sure that that has its own benefits too.
  • Self care – The idea of doing something that helps you feel good, mentally and physically, seems obvious but it’s so easy for all of us to get caught up in everything we need to do and everything we’re worried about, that we often forget. For some people, this is taking a long bath, for others it’s painting their nails, or catching up with a friend, sleeping in, or keeping a gratitude journal. The list of potential options is probably longer than The Lord of the Rings books so I’m sure there’s something useful there for all of us; it just might take a while to find the right thing.
  • Meditation – I don’t know a whole lot about meditation (and all of the different types) but I know that some people swear by it. Not only does it reduce symptoms of anxiety, depression, and PTSD, it can also improve your sleep, blood pressure, and heart rate. Regular meditation can also physically change the structure of your brain, improving your senses, your concentration, and ability to process emotions. Knowing it can do all of that, it definitely seems worth researching.
  • The 333 rule – I’ve seen many variations of this technique so you don’t have to stick to these rules, just the ones you set for yourself, the ones that work best for you. In this example, when you’re anxious, you try to redirect your focus to three things you can see, three things you can hear, and three things you can touch. I’ve heard some people say that this is too easy and doesn’t distract them enough, leading to all sorts of imaginative versions of this idea: my favourites, I think, are three things you can fit in your pocket, three things you can balance on top of each other, etc. Whatever works for you, if it works for you.

Other notes:

  • I’ve been taking medication for my anxiety for a long time now, Diazepam as and when I need it (although it does have to be monitored, which it is). It has been incredibly helpful although I’m careful about never getting dependent. There are ebbs and flows in my anxiety where I take it more and I’ll take it if I know I’m about to do something stressful, like have a stressful meeting or take a flight, but it’s very much a balance of taking them and using other strategies like the ones I’ve listed.
  • As I said, I do think it’s also worth noting that I have some harmful, self-destructive methods of coping with my anxiety. I’ve been self harming on and off since I was twelve because I just needed to give all of the intense feelings an escape route out of my body, like a pressure valve (it’s always been sporadic though – I’ve never been a really serious self-harmer, not in comparison to how much some people struggle with it). My hair pulling is worse though. I’m not sure if it’s Trichotillomania or if I’m stimming but either way, it’s not good: I’ve always been able to avoid it being visible but I have so many patches of hair at different lengths and my scalp gets so sore. I’ve also developed problems in my hand, wrist, elbow, and shoulder from the repetition of pulling. But it’s so hard to stop and trying to resist the urge to pull causes me incredible stress and anxiety so I just end up pulling to escape it. I’m talking about it in therapy though so maybe we’ll make some progress with that.

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So I hope this has been helpful. Hopefully there are enough ideas here that there’s something for everyone, to try at least. If you’re reading this and struggle with anxiety, I feel for you and I’m in this with you and I hope that you find something to help you manage it. Severe anxiety is not something that we just have to accept, just have to live with. There are ways to make it easier – maybe there are even ways to shed it – and I hope you find them because you deserve to enjoy your life. You deserve to feel everything, not just anxiety.

Another Autistic Summer

Summer as an autistic person can be really difficult. There are a lot of changes and some of them can feel quite extreme, quite overwhelming: the heat, the humidity, the general increase of people out and about… It can feel like a lot to deal with. I don’t pretend to know everything – not by any means – but I thought I’d share some of my thoughts and strategies for dealing with some of the big summer stresses…


SENSORY ISSUES

  1. Too bright – While bright skies are a sensory issue year-round, the summer months are hard in their own way: the light feels like it has a different intensity, it reflects back at me differently, it’s a different colour, it’s present for more hours of the day… It’s hard work on my eyes. I like working in my living room because it has white curtains, allowing for some light but without the glare (although anti-glare glasses are a good option to explore if you’re struggling inside). Outside, sunglasses are the obvious protective measure, but polarised sunglasses are better if you can get them.
  2. Too noisy – I find noisy environments very stressful and my anxiety only increases the longer I am in that noisy environment. The sensory overload is just too much and I become less and less able to function. And with more people around in the summer, the noisier it tends to be and therefore, the more stressed out I can get. I’ve found that the most effective coping mechanism is noise-cancelling headphones but playing music or audiobooks/podcasts through headphones and earplugs (if you find them helpful, you can have ones specially made – relatively inexpensively – to fit your ears, making them more effective) also work.
  3. Too hot – I’ve always found the heat of the summer very difficult and have been using open windows, fans, damp flannels and so on for years. But over the years, I’ve found the noise that regular fans make more and more anxiety-provoking so I finally invested in a Dyson silent fan. It was expensive (note: they are less expensive outside the summer months) but it was one of the best investments I ever made in managing my day to day health; it’s the most effective fan I’ve ever had and I use it year round. It’s more than made up for the expense. It’s also important to remember to drink as much water as you can – this is especially important for those with hEDS as well as dehydration makes the symptoms worse. Carrying a water bottle with you, having an app that reminds you to drink regularly, and so on can help you to remember and help you to build it into your routine.
  4. Different clothes – Following on from problems with heat, that often demands an entirely different wardrobe, which can be a less than comfortable change, literally and figuratively. It can involve different, uncomfortable fabrics or less fabric altogether, which can result in chafing or just feeling really exposed when people look at you. Finding specific fabrics – like cotton or linen – that aren’t irritating can be helpful. Layering, so that you can stay covered up as much as you need to to be comfortable, with thin fabrics can allow you to balance the need to keep cool and the need to be covered. And if you find a piece of clothing that really works for you, I recommend getting several to avoid the repeated stress of trying to find comfortable clothes.
  5. Crowds – As we know, in the summer, there are more people out and about and the world just feels more crowded. Public places are busier and that can be really stressful. Especially with the anxiety around COVID-19, crowds and crowded places can feel overwhelming which can cause anxiety attacks or meltdowns. The obvious advice is to avoid busy places at peak times but we all know that that’s not always possible. We all have our own strategies for managing anxiety but the ones I find most helpful in this situation are having someone I trust with me, giving myself plenty of time so that I don’t have that additional pressure, and I’ve also found the sunflower lanyard useful in certain places.

CHANGES IN ROUTINE

  1. Day to day changes – For some of us, our routines change regularly with the seasons but that doesn’t make it any less stressful. As someone who finds change very stressful, I try to make these changes slowly so that I have time to adjust and don’t end up feeling overwhelmed. It requires planning but it can really reduce anxiety.
  2. Loss of structure – While this isn’t, of course, applicable to everyone, the summer is often when people have time off from their usual occupation or go away on holiday. And with these things, we often find ourselves without structure. A lack of externally imposed structure can lead to a lot of aimlessness and/or anxiety so learning to build our own structures is a good skill; you don’t have to fill your schedule from opening your eyes in the morning to closing them at night but giving yourself things to do and think about (beyond their inherent value) keeps you moving and feeling and living. I do struggle with this but I’ve found it really helpful to have my family prompt me when I get stuck in a rut.
  3. Seeing less of some people and more of others – As I talked about in my BPD Awareness Month post, I get very anxious about my relationships and fearful that I’ll mess them up or that my issues will be too much for people. So a big change in my routine of seeing friends makes me very anxious. Living with such limited energy, socialising is something I find stressful because it requires so much energy, even though I enjoy that actual spending time with people. I’m lucky that my good friends are really lovely and really understanding but I still worry. I haven’t really figured out a good way of dealing with this anxiety but I do try to be as honest as I can with my friends and family so at least we all always know what the situation is.

ANXIETY

  1. Trying to do too much – When I have free time, I often end up struggling with a lot of anxiety, usually about whether or not I’m using the time in the best way (partly due to the fear that if I say no to too many things, people will think I don’t care and eventually want nothing to do with me). This can result in trying to do too much, more than my health – my sensory issues, my energy levels, and so on – really allow me to, which can lead to meltdowns or feelings of burn out. Over the years, I have gotten better at judging what I can and can’t manage and what’s really important to me but I still find it difficult and stressful and sometimes upsetting. I think it comes down to practice and self-compassion but that’s easier said than done. (I know that I also have issues about being as productive as possible but I also have a lot of anxiety about time running out in general, in multiple aspects of my life, which means I often end up pushing myself too hard. But I can’t say I know what to do about those issues at this moment in time.)
  2. The stress of holidays – While there are fun things about holidays and travelling, there are a lot of really stressful aspects, from the actual travel like flying to all the new-ness to being cut off from all of the normal coping mechanisms. There’s also a weird expectation to have fun on holiday that can create added pressure. Personally, I’ve found that the absolute best thing I can do in these situations is just talk to whoever I’m with and try to be realistic about what I can manage, although it’s still a learning curve. It doesn’t always feel like enough but I’m still learning to adjust my expectations to fit with my physical ability; I struggle with feeling guilty about ‘wasting opportunities’ too but, as I said, learning to let that go is a process and requires practice and self-compassion.
  3. Anxiety around what comes next – This is the first year where I haven’t been in education (or had education on the very near horizon) so I can only really speak to the experience of being in education and how it can, at times, feel like an endless hamster wheel. Every year, there’s the freedom of the summer holidays but there’s anxiety too. I always had this anxiety in the back of my mind about what the next year would bring, having finally gotten comfortable in the patterns of the year just gone. After all this time and all these years, the new academic year still stressed me out to an almost unbearable level so I don’t really know how we, as (disabled/neurodivergent/struggling) students, are supposed to manage that stress. I think a big part of it is on the schools and how they handle the roll out of the new year and talking to the school about it can help but, personally, I haven’t had much experience with that making things better. But I have to hope that they will eventually improve.

I know it’s been a while since my last post. A lot has happened and I’ve been having a really, really hard time. Some of that is stuff that I would like to write about at some point but I still feel like I’m stuck in the middle of it. Plus, I’ve been really struggling to write – with even being able to string a sentence together – which hasn’t been helping anything. Things still aren’t great – which may be the biggest understatement of my life – but I miss writing and I miss writing for this blog so I’m trying to push through. I wrote most of this a while ago and, given how hot it’s been recently, I wanted to get it up while it might still be helpful. I hope it is.