Sleeping Bendy

Mum says I “sleep bendy,” I’m not entirely sure what that means but it makes sense. I think “sleeping bendy” translates to a few things that people don’t realize about BJHS.

I sleep bendy so I need more pillows to avoid injury in my sleep.

When I fall asleep in chairs I curl around them.

When I sleep wrong it means more pain for a few days.

I sleep bendy and it means that I am an excellent cuddle partner (who needs to worry about space when I can curl up into *the* tiniest ball ever.)

Sleeping bendy can hurt, it can mean paying extra for more pillows, it can mean using people as pillows when necessary (sorry mum), sleeping bendy means being tired because you couldn’t sleep because you were too bendy sometimes.

To all those sleeping bendy, it’s okay, keep doing your best. Sleeping bendy is better than no sleep at all.

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Sensory Stuff

Autism does weird stuff when you’re overwhelmed.

I love swimming, it’s why we are travelling for the commonwealth games but when you’re autistic the things you love can get overwhelming.

I had forgotten to pack my swimmers, mistake number one, so I had to get new ones. The ones I got were in a style I don’t usually wear and I had to get shorts to wear over them, another new thing. I usually swim in indoor, chlorinated pools or the ocean and I was in an outdoor, salt water pool.

The water was cold and too shallow for me to swim in properly, I tried backstroke but the new swimmers plus the hot/cold contrast from the air and water started to cause sensory overwhelm. I couldn’t swim and I was desperate for the familiar feeling of the water, not a good time. I (thankfully) was able to verbalise the overwhelm and mum found an amazing alternative, the spa!

It was warm, chlorinated, under cover and deep enough to cover my whole body. Definite win. I spent a long time in the spa and by the time i got out the overwhelm from earlier and the anxiety of being in an unfamiliar place had passed.

Autism is funny sometimes, in the way that it makes little things, like the lack of chlorine in the pool, feel distressing.

So next time you see a person with autism trying a new thing, think about all the smaller new things inside it, you never know how much energy it’s taking them just to try.

Flying with BJHS

BJHS (Benign Joint Hypermobility Syndrome) is a pain in the everything to fly with.

I woke up at 3am for the flight and everything was okay, no joint pain. And then came the sitting in the taxi, and in the airport, and in the plane, and on the bus. Sitting down hurts because of the pressure on my back, cushions help but there weren’t any to use at the time so that would hurt by itself, add in that I hadn’t had my anti-inflamatory medication for a week and you’ve got a recipe for disaster.

Once off the bus breakfast and anti-inflamatories were my top priority, however medication can only do so much. So my next step was buying heatpacks, this took longer than expected (3 frickin hours) and the pain was making it hard to walk.

^ My nutritious breakfast ^

Once we got home I spent about two hours lying like this:

(Those things on my back are heatpacks. Aka: Life Saving Magic Bags)

^ The heatpacks are only $9 each! ^

In conclusion:

Heat packs = Yes

Hard chairs = No

Flying with Crohns

Our flight left at 6am.

This meant waking up at 3am, taxi pick up at 3.30am and we were at the airport by 4am for check in. Waaaaay too much early morning.

Last time Darrell flew interstate our anxiety was so high, they almost missed their flight. They did miss luggage check in and had to fly without their suitcase. It was awful, so stressful. Do not recommend.

So we were both very anxious about this flight. Of course when you are stressed, it makes Crohns disease flare up even more. In the week prior to leaving, I was spending a lot of time racing to the toilet with explosive diarrhea. It was awful and certainly didn’t help my anxiety.

On the morning of the flight I had my usual low residue breakfast, toasted English breakfast muffin with a slice of ham, but only half portion. I also took 2 Imodium (yummy), just in case, and no coffee :: sadness :: .

Arriving 2 hours early at the airport meant not only did we have heaps of time to check in, but also use the toilets without rushing.

We got an in-flight snack of a tasty croissant. Thanks to my Imodium it stayed put without drama, but I couldn’t risk the coffee. My book was bigger than the tray table!

Post 2 hour flight we had a one hour bus ride to our final destination. It was long and by this stage I was getting very nauseous. It was 7 hours with only a muffin and small croissant, I should have had more water to drink.

Happily the Imodium and small portions of low residue worked. My gut held firm (hahaha literally, Crohns humour is toilet humour).

We had arrived on the Gold Coast for the Commonwealth Games. 😊

Marita

About Us

We are a neurodivergent mother and child, with chronic illnesses.

Marita – mum, she/her pronouns. diagnosed with active Crohns disease when at 17. Currently unmedicated*, on a low residue diet. Studying to become a librarian.

*once I finish getting all my vaccines up to date I will be started steroids and immune suppressants.

Darrell – Teen, they/them pronouns.

Diagnosed with benign joint hypermobility at 13. Currently on anti-inflammatory medication and trying my best not to injure myself. In high school.