“You have Aspergers?”

If you follow me on Instagram you know that I’ve taken up roller derby recently.  I’ve really thrown myself into the community, helping with the club’s events as they come up.

It just so happened that we had our first home bout of the season last weekend so there was a lot to do, and I ended up spending a lot of time with my new team mates.  And I found myself having two conversations about autism with two different people.

The first one was with one of my teammates who asked me if I had Aspergers as we were hanging up decorations.  I said I did, and she said she recognised the signs because her ex husband had it.  She went on to describe how controlling he was which made me really uncomfortable.

It often happens that if someone asks me if I’m autistic, or if I tell them, they go on to tell me about this person close to them who is on the spectrum who they don’t like for whatever reason.  What’s the point of that?  Are they implying that it’s up to me to reassure them that autistic people aren’t all bad?  Because I don’t feel like I should have that responsibility.  I’m not saying that this woman doesn’t like her ex husband as a person she just couldn’t tolerate his behaviour, but still.

The second person to ask me about Aspergers was my coach.  I had been running back and forth all day between jobs asking her what needs to be done next and I was sure she was sick of my questions but she never let on.  Still she waited until we were at the pub for the after party to ask me.

I had just been to the bar and took my drink to a table where she and several others were sitting.  I happened to sit next to her and when I did she withdrew herself from the conversation at the table and turned to face me.

“are you having a good night?” she asked with what I thought was an unnecessary level of trepidation.

“Oh yes”

“Now look” She said, looking very concerned “I want to ask you something, I’m a bit drunk so I’m just going to lay it all out there.  You have Aspergers?”

“Um…yeah”

“Ok…I just want to know as your coach that we’re not doing anything that will offend you.  Do you mind us giving you advice at training?”

“I like it when you give me feedback, it helps me pick things up quicker.”

She then touched me on the shoulder and apologised.  I assured her that I don’t mind being touched.  Except inappropriately of course.  She asked me what social aspects I find difficult, I explained the problems I have with eye contact and keeping up with conversations.  She then said they were very glad to have me, and that she thought I would be an asset to the team.

I always feel uncomfortable after these conversations, even when they say nice things about me like my coach did because I like to think I pass as neurotypical but clearly I don’t.  I guess it doesn’t matter in the scheme of things, I can still do everything a neurotypical person does but I still never feel quite prepared for these conversations.

Mac

Sleeping and Seroquel Update

It has been a while since I’ve blogged and I will give an update on my life shortly but today I want to talk about the sleep issues I’ve been having lately.

So as you know if you’ve been reading my blog I was previously taking a maximum dose of zeldox to get to sleep and that worked for about a year, but in October last year that stopped working, and so did the temazepam that I had to take on nights when it didn’t work.  I happened to have an appointment with my inpatient psychiatrist after one of my sleepless nights and she gave me 50mg of seroquel to see if that would help.  It did, and when I saw my regular psychiatrist later that week she prescribed seroquel to be taken regularly.

For a while that worked well.  I was sleeping for about ten hours a night and waking up refreshed with no hangover drowsiness.  But it wouldn’t last.

It started with a few nights where I would have to boost my dose of seroquel to 100mg.  Bizarrely the 50mg of seroquel seemed to not work when I had a full stomach, so I had to watch how much I ate.  I’m aware that increasing your medication without notifying your doctor isn’t a wise move but I do know a bit about my medications and 100mg of seroquel is not a high dose.

Then a few months ago I began waking up during the night at around 3am.  Sometimes I would go back to sleep, sometimes not.  I don’t mind being up in the middle of the night too much because I wasn’t tired and I could have some quiet “me” time.  However is was very disruptive for Pea who is trying to sleep while I’m moving around, watching youtube videos on my phone (albeit with headphones) eating snacks etc.

The waking up was getting earlier and earlier until I was only getting about two hours of sleep.  Sometimes when I woke up I would take another 50mg of seroquel but I was in denial that we had a problem.

Then I started having to take an extra 50mg when I hadn’t eaten too much, or hadn’t woken up.  I would take a 50, lie in bed for a hours trying to sleep, give up then take another 50.  Suddenly 50mg wasn’t putting me to sleep any more.

After going a whole week of needing 100mg to sleep I was willing to admit we had a problem.  Then on Sunday I took 100 and it didn’t work.  So I took an extra 50.  Nothing.  I took another 50 again putting me at 200mg of seroquel.  I went to sleep and woke up feeling pretty flat.

I was despairing of the prospect of seroquel working at all the next night by that point so I called my psychiatrist and told her what I had done, and said I didn’t know what to take that night.  She told me to come in for an emergency appointment.

In the appointment she said that seroquel is used as a sedative but it is primarily a mood stabiliser and when you are taking in regularly the sedating effect will wear off.  Also apparently seroquel does not have a greater sedating effect above 200mg so me taking more than that out of desperation won’t do any good.

She said she will keep the seroquel in my medication regime because I need it for my mood disorder, but she prescribed a new drug for my sleep disorder, gabapentin.  I was surprised because I mistakenly thought this drug was for people with parkinson’s disease.  But apparently it’s used for epilepsy, mood disorders and sleep.

She told me she wants me to get to 300mg of gabapentin a night, but to start with 100mg, go to 200mg the next night then 300mg the night after that.  If 100mg that night didn’t work by midnight, she said, I could take another 100.

I went home and did wh

at she said and even though I was incredibly anxious about whether it would work or not it did and I didn’t have to take that second 100.  I went up to 200 the next night and 300 last night and have enjoyed long unbroken sleep with no hangover effects.

Before I left she told me to call her on Thursday – today – which I will do, and update her on how I went with it all.  I will do that, and keep you updated.

 

Mac