Earworms

I get earworms a lot. Fragments of songs, a chorus, sentence or even just one word, played over and over in my mind. For hours, days or sometimes even weeks. When they are from songs, they are called earworms. But sometimes they can be spontaneous words, sentences or phrases that I’ve heard or that have popped into my head randomly. In which case they are better called internal echolalia or internal palilalia. Internal because I don’t say them out loud if I can help it.

Mostly I have just one earworm in my head at a time. But today I have two competing earworms taking turns. There’s nothing I can do but wait them out.

So, what are these two songs going round and round and round in my head all day today? (Actually, I lie, they started yesterday…)

Exhibit A: the theme song from the History Channel show Vikings. Vikings is my very favourite show, I haven’t missed a single episode in all of its five years. Not just because it’s partly shot in Ireland, and more specifically the part of Ireland I did my undergrad thesis fieldwork. Not just because I know some of the extras who worked on it. But also because it showcases a lot of strong, fierce women. And contains a lot of sex and gore. And amazing costumes. And fantastic plots where even I can’t see the twists coming.

Anyway, I recently figured out the lyrics to the theme song so now it’s stuck in my head:

“More, give me more, give me more…

If I had a heart, I could love you.

If I had a voice, I’d sing.

After the night, when I wake up,

I’ll see what tomorrow brings.”

You can here it here.

Exhibit B: The lyrics of the song Enjoy Yourself. Specifically the first two lines of the chorus:

“Enjoy yourself, it’s later than you think.

Enjoy yourself, while you’re still in the pink.”

The Specials did a cover of this song. Which you can listen to here.

That song was a cover of this version by Prince Buster.

Both songs I’ve heard and enjoyed many times. But the version that’s stuck in my head is quite a different version, that has the same chorus but quite different verses. And that’s the version by Dorris Day. As you can see, while it’s got a pleasant uptempo beat, it’s actually quite a dark song.

And a reminder that life is short and I need to do less worrying and try to enjoy myself more.

Maybe that’s what earworms are? Messages from my subconscious?

Or maybe they’re just lyrics of songs I’ve heard recently, that get stuck in my brain for no reason. Who knows.

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Less Waste 2019: Wasting Pool Membership

I never was into sports or exercise as a kid. Undiagnosed EDS meant I was always exhausted and my joints and limbs hurt. Undiagnosed autism meant team sports were baffling at best. But I always loved swimming. We’d spend the summers in my aunt’s lakeside resort in Turkey, and I’d practically live in the water. A real waterbaby. I’d still get tired quickly, especially seeing as I was too skinny to float properly. But it was so relaxing, especially underwater where the sounds were all muffled. I’d hold my breath for as long as I could and pretend to be a mermaid.

We joined the local pool last summer. The kids, who’d struggled through years of swimming lessons without success, taught themselves to swim within a few weeks. And I just spend the time splashing around with them, nothing too strenuous.

It’s a gentle walk there and a gentle walk back. We go around once a week, unless we are sick, and find the quietest times of day to go. We stay for around an hour, by which time I’m feeling quite cold if I’m bring my honest. I’m going to invest in a wetsuit like my daughter has. There’s a cafe on the premises and we have a snack and a hot drink before heading home. And by the time we are home I’m usually quite tired and need to rest.

But it’s worth it. The kids love it, we get some exercise and have some fun and it’s a nice routine. We may try and increase it to twice a week if we can build up enough stamina.

So there you have it. My one attempt at structure and exercise and building up strength. Having the membership is key. Not only does it mean we can go at quiet times when it’s not open to the general public (we often have the place to ourselves) but because we have to pay for the whole year, it provides an incentive not to “waste” the membership and skip a week. Though if we don’t feel well enough to go I try not to feel too guilty.

Having a chronic illness is a constant balancing act between pushing yourself to do things you enjoy, and not overdoing it. I think we’re managing about right with this pool membership.

Tired

I’m tired. So very tired. Beyond tired, in fact. The kind of fatigue that creeps into every pore, every cell. The kind that no amount of sleep can cure.

When I suffered my Autistic burnout the main feeling I had was that of exhaustion. I came to suspect I had Chronic Fatigue Syndrome. Which I did. And I do. But not in the way it’s typically thought of. More in the way that it’s a symptom of EDS, and of undiagnosed autism.

I recently read this article on Autistic Fatigue. And in the comments, so many autistic people, and their parents, likened it to CFS. And all the descriptions of CFS sufferers sound so familiar. I wonder how many of them have been assessed for EDS and/or autism. Because I do think that CFS symptoms are another overlooked part of being autistic.

Being in chronic pain is so very tiring. By chronic pain I don’t just mean physical pain, but also mental pain and emotional pain. Living in a world not designed for our bodies or our brains. Where our differences are seen as something that needs to be stamped out. Eradicated.

Fighting this world, or even just surviving it, takes massive amounts of energy. I’m surprised so many of us still try. But we do. We fight every single day. But we are tired. Weary. Our bones and brains ache. Our muscles give way. We collapse in a heap at the end of a seemingly easy day, too tired to move.

So please be gentle with us. Realise the Herculean effort it takes just to get out of bed, get dressed, wash a few dishes, go to the shops. Tasks that come easy to you may be the last straw for us. Because we are tired. Beyond tired. And it’s not something that will just go away. No matter how much sleep we get, how much self care, how much we try. Not until the world become more autistic-friendly, more disabled-friendly, and less tiring.

Autism Parents: Be careful what you wish for.

So many parents of non-speaking autistic kids would do anything to hear their children speak. Some try everything, from ABA to abusive quack cures, hoping for what they would consider a miracle, that their child will start talking. But I often wonder how they would react if their child “found their voice” but that voice wasn’t quite what their parents had in mind.

And just recently, I witnessed how some parents actually did react in that situation. Carly Fleischmann is a non-speaking autistic lady who was dismissed and called “retarded” at a young age. She famously taught herself to type and turns out that she was actually quite gifted. Her parents cashed in on this, writing a book with her, and she became a bit of a celebrity (even hosting her own chat show) . They gushed how they always supported her and knew her brilliance.

However, Carly didn’t always toe the line. She spoke out about how abusive the ABA her parents had subjected her to was. She believed it caused her OCD. Shortly after that, she was subjected to ECT, supposedly to treat her OCD, which not only didn’t work, but also caused her to lose her ability to type for a while. Even though her father claimed the ECT was her choice, not many in the autistic community believe him.

A lot of autistic people excel at spotting patterns. And the pattern we see is this: Carly gains/regains her voice, she speaks up against something her parents are doing, her posts get deleted, family members claim she’s fine and it was all a misunderstanding/her account was hacked/some other excuse. She disappears for a while. Then re-emerges with some new YouTube channel, some new project, having regained her voice again.

This pattern repeated again a few days ago. She wrote a post accusing her father’s boyfriend of sexually assaulting her. Her father commented saying the boyfriend thought he was just hugging her. Her post then got deleted and replaced with one saying her account had been hacked. Once again, the autistic community are not buying it. Carly has once again disappeared.

So, to all those autism parents who desperately wish their non-speaking autistic children would talk. Or type. How will you react when they tell the world you are abusive? When the longed-for “I love you” never gets said, and instead they tell you the exact opposite? Will you shut them down, take away their voice, speak over them like you have always done?

Less Waste 2019: Wasting Time

I have fallen into a bit of a rut. Days go by and I’ve no idea where they went. I don’t seem to achieve very much of anything. I feel I just sit around, wasting time.

Yes, I know I’ve nothing to feel guilty about. I’m disabled and in pain and exhausted. And yet, feel guilty I do.

And while I don’t believe in pushing through the pain, as that only leads to boom and bust cycles, I do feel I can be more efficient with how I spend my time.

This means using timers. Working for 20 minutes then resting for 10. (And starting each rest period with a snack) Limiting my screen time to those rest periods.

It means making lists of tasks I need to get done. Going through those lists. Finding efficient ways of doing things eg emptying dishwasher while waiting for the coffee machine to heat up. Bringing something with me each time I go up or down the stairs and putting it where it belongs. Putting things away as I go along. Things that most people probably do naturally but that don’t come natural to me at all.

It also means that when I do get to my scheduled rest periods, I can relax and not feel guilty as I know I’m still getting plenty done.

We All Live In A Pokemon World

Today I want to write about one of my enduring passions. Pokemon. Yes, you read that right. Yes, I’m 41 years old. And one of my favourite things in the world are Pokemon.

I used to say I “got into” Pokemon in my childhood. But I did the maths and turns out I was actually around 20 years old when the anime series first came out. And the anime was my first introduction into this fabulous world. I still remember my awe and wonder at the very first episode of season one. It helped that I used to babysit my eight year old sister a lot at the time, and she was as addicted as I was. I used her as my “excuse” for watching it, the same was I use my children now. But in reality I enjoy it as much as they do.

It’s not just the Anime though. There’s the games, both on the 3DS and the Switch. (We haven’t really gotten into the card game but haven’t written it off either) And there’s Pokemon Go. Though since one of the developers of Pokemon Go, Niantic, partnered with Autism Speaks I no longer do anything in the game that involves giving them any money.

And then there’s the Plushies. We have quite a collection. They make really easy and great Christmas and birthday presents. Not only are they great to cuddle and stroke, we often role play with them and our favourites are often by our side. They have their own unique personalities and bring us so much joy. We also have mugs, colouring books and Annuals.

Not that they need to be, but Pokemon are actually very educational. There’s quite a lot of reading in the games, a lot of Japanese culture, and they are great discussion points when talking about the real-life things that are the inspiration behind a lot of Pokemon eg animals, plants, elements, forces. The kids are currently caught up in creating their own Pokemon Region and inventing new Pokemon for it, as well as a storyline and enemy “team”. This involves creative writing, art, mapping etc and they are very busy with it.

It is often claimed that the creator or Pokemon, Satoshi Jajiri, is autistic. And while this is highly plausible, I’m not going to say any more about that. Because he has never publicly confirmed it and I don’t believe in armchair diagnosis or outing people. But it is true that Pokemon are beloved by an awful lot of autistic people. Each person has their own reasons for this, but for me they combine my love of collecting (“Gotta Catch ‘Em All”), of mysterious and wonderful creatures, of escaping into another world. Plus the many puns in the names and the humour of the anime. And my love of all things Japanese.

To me, Pokemon are as legitimate an interest as gardening or cooking or playing sports. No matter what age you are. And the world of Pokemon is just as real as the one I live in. I’m so glad it exists.

Less Waste 2019: Wasting Away

I weighed myself today. Not something I do often, but I felt like I needed a wake up call. And I got one. I’m now at the lowest weight I’ve been since I was a teenager. Not good. Not good at all.

My digestive issues are still unbearable. Constant nausea and pain. And most medications have close to no effect. Eating little and often helps, but I need constant reminders to do so.

This time of year, January, everyone is bombarded with advertisements for weight loss diets. I really wish the target audience of those ads realised the lies they are being sold. I wish they knew that people who are “overweight” actually have a longer life expectancy than those who are “normal” weight (except in the highest weight category, which is roughly only 5% of the population). And that those of us who are “underweight” have the lowest life expectancy of all.

Being autistic and having EDS, I already have a pretty low life expectancy. Add to that the fact that I’m underweight….yeah, it’s scary.

But at least my weight is something that I can try to improve. Gaining weight may not be the impossible task that losing weight is (97% of weight loss diets fail, and most dieters end up with higher weights than when they started) but I know that will hard work and a lot of effort, I can possibly push the scales back up a tad.

This might be the toughest of my 2019 challenges. Wish me luck!