Another Autistic Summer
Posted on August 1, 2022
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
- 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.
- 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.
- 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.
- 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.
- 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
- 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.
- 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.
- 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
- 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.)
- 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.
- 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.
Goodbye Moclobemide
Posted on June 11, 2022
TW: Mentions of suicidal thoughts.
After a couple of months of Moclobemide, it became increasingly clear that it wasn’t really working. It was better than nothing but it wasn’t good enough; I was having less bad days than I’d been having previously but I wasn’t having many good days. I don’t expect constant happiness – I know that that’s not a realistic dream – but I have to believe it’s better than this. But, in order to try something new, I had to get off the Moclobemide first.
I was taking 300mg twice daily before I began to reduce the Moclobemide and I came off it fast. As always, this was a process I discussed with my psychiatrist and we made all of the decisions together, dependent on my medical history and our joint understanding of my reactions to these kinds of medications. This is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional.
150mg Twice Daily (+ 20mg Propranolol Twice Daily)
The first phase of the reduction was a little over a week and I didn’t feel particularly different. I was still feeling depressed and hopeless and miserable; I was so incredibly anxious. I didn’t want to be around people: I just felt so overwhelmed and oversensitive. I was feeling pretty unmoored and lost but on the worst days I felt pathetic and unaccomplished and useless. It was awful. Plus, it was a pretty hard week: although I had one really good hangout with a friend, I also had two quite upsetting medical appointments and a migraine that lasted several days.
Sleep-wise, it was still a struggle – as it has been for months. Getting to sleep was frustrating; sometimes it took hours, even on the few occasions that I took sleeping pills (I haven’t found them helpful since I tried ADHD medications back in November last year, which have thoroughly screwed up my sleep). The longer my difficulty with sleeping goes on, the more anxiety I have around it, which definitely isn’t helping. When I finally did sleep, I slept badly with the vivid, stressful dreams that I’ve come to associate with the changing of medications. I’d sleep late – into the afternoon – but even then, when I had managed to get up, I was still tired and sleepy, actually falling asleep on the sofa during the day several times.
I was craving food – particularly salty foods – but nothing satisfied the craving, which was incredibly frustrating.
It’s probably worth noting that I was in the middle of a pain flare up, with the pain mainly in my arms around the elbow. It was pretty bad, worse than the chronic pain has been for a while. It was especially bad in the mornings and was part of why I struggled to get up once I finally managed to wake up. It was so bad one day that I had to cancel my hydrotherapy session because just the thought of washing my hair in the shower had me near tears. Fortunately, it did start to get better by the end of the first phase, much to my relief.
150mg Once Daily (+ 20mg Propranolol Twice Daily)
The second phase of reducing the Moclobemide lasted ten days. It was a hard week: I was very depressed (and the suicidal thoughts were back) and I was easily overwhelmed and upset. It felt like my brain just wouldn’t shut up and kept magnifying all of the most distressing or anxiety-provoking thoughts I had; I was doing my best to keep myself distracted by mundane stuff as much as possible but I wasn’t always successful. As I said, it was a really hard week.
It was still taking me hours to get to sleep, even on the nights I was falling asleep on the sofa. Most nights, I slept badly and I had more of the same vivid, stressful dreams (and nightmares) before struggling to wake up, no earlier than eleven. I was sleepy within an hour of waking and Red Bull didn’t seem to help. I was so tired and so sleepy during the day; I fell asleep on the sofa in the day several times during those ten days. I was so tired all the time that I struggled to get anything done.
I was still craving the sensation of eating – especially salty foods, as I said – but again, food just wasn’t satisfying or filling in any way. I’ve got it under control for the most part – I’m getting better at resisting the urges and eating according to what I should be eating and not what I randomly want to eat which I then get no pleasure out of anyway – but it’s very frustrating. I’m also talking to a nutritionist about the specific salt craving and she’s sent off for blood tests to determine whether I have a vitamin or mineral deficiency that needs attending to.
The chronic pain got bad again after it’s momentary dip. It was so bad that it was repeatedly waking me up in the night and washing and drying my hair was an exhausting experience. I had several really bad pain days that made it a struggle to concentrate, to do anything. I also had a several horrible migraines that took me out of commission for a couple of days each, which was very unpleasant. They have been worse though so I’m grateful for that.
Washout (+ 20mg Propranolol Twice Daily)
The one day washout period was awful. I was deeply depressed with suicidal thoughts; I was barely functional. Fortunately, it was just one day without medication rather than the usual two weeks. That’s always the worst part of changing medications for me so I’m grateful that it was so short this time.
So coming off the Moclobemide wasn’t fun but it wasn’t as terrible as it could have been either. I’ve definitely had worse. I’m just glad it’s over and now I’m onto the next medication, which will hopefully be better. It’s hard to stay hopeful when I just seem to be finding medications that don’t work but even when I do feel hopeless, I honestly don’t know what else to do. So I just keep going.
[I just thought I’d add that, a few days after this, the chronic pain faded and I started to feel a lot better. So that was very good news.]
Quotes For Summer
Posted on June 5, 2022
Summer is upon us, although it seems hesitant to commit this year. At least where I am. But we’ve had some gorgeous sun, some beautiful blue skies, and a spectacular summer storm. So I think we’re getting there. And thus I thought I’d share some quotes about summer…
“In early June the world of leaf and blade and flowers explode, and every sunset is different.” – John Steinbeck
“Summertime is always the best of what might be.” – Charles Bowden
“Summertime. It was a song. It was a season. I wondered if that season would ever live inside of me.” – Benjamin Alire Sáenz
“In summer, the song sings itself.” – William Carlos Williams
“One benefit of summer was that each day we had more light to read by.” – Jeanette Walls
“Summers had a logic all their own and they always brought something out in me. Summer was supposed to be about freedom and youth and no school and possibilities and adventure and exploration. Summer was a book of hope. That’s why I loved and hated summers. Because they made me want to believe.” – Benjamin Alire Sáenz
“Working is bad enough in the winter, but in the summer it can become completely intolerable. Stuck in airless offices, every fiber of our being seems to cry out for freedom. We’re reminded of being stuck in double maths while the birds sing outside.” – Tom Hodgkinson
“In the summer, the days were long, stretching into each other. Out of school, everything was on pause and yet happening at the same time, this collection of weeks when anything was possible.” – Sarah Dessen
“Summer is the annual permission slip to be lazy. To do nothing and have it count for something. To lie in the grass and count the stars. To sit on a branch and study the clouds.” – Regina Brett
“The sunshine was like powdered gold over the grassy hillside.” – Maud Hart Lovelace
“Live in the sunshine. Swim in the sea. Drink in the wild air.” – Ralph Waldo Emerson
“Summer has a flavor like no other. Always fresh and simmered in sunshine.” – Oprah Winfrey
“In the summertime, when the weather is hot, you can reach right up and touch the sky.” – Mungo Jerry
“The summer night is like a perfection of thought.” – Wallace Stevens
“It’s summer and time for wandering…” – Kellie Elmore
“August rain: the best of the summer gone, and the new fall not yet born. The odd uneven time.” – Sylvia Plath
“The sun tires of summer and sighs itself into autumn.” – Terri Guillemets
“One must maintain a little bit of summer, even in the middle of winter.” – Henry David Thoreau
Summer was always a conflicting time for me. When I was in school, I mourned the end of comfortable routines and the parts of school that I liked but looked forward to the freedom of the holiday. It was the same during sixth form and university. This year is one of the first summers I’ve had without of educations on either side of it so it’s a bit weird; I’m in uncharted waters to a certain degree. And the COVID numbers are still far too high for my anxiety to relent around all of the possible socialising that summer traditionally involves.
Do you have any quotes that you associate with summer? Or if not quotes, what about poems or songs?
Finding Hope