Week 37 - A painful week of change

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Last week was a very physically painful week. This week was the first week where paid support looked after me more than my friends did. Well that was the plan anyway.


Monday was an ambitous day. Multiple work meetings, time in the cafe, a walk and then a night alone with a new babysitter.

I woke up at my friends house and i packed my bag. I went to the mothercare cafe (a place i feel safe) for lunch time and i had a quick catchup meeting with a member of my team.

I then attempted to get some work done, but i was struggling. I didn’t sleep very well Sunday night and i couldn’t focus. I had a floaty feeling most of the day which was pretty difficult.

I intended to hide in the cafe most of the day, but that wasnt possible because i forgot to bring something to enable me to do so (i may write about this in the future).

After i got home i crashed in my new bed for a bit. I was really tired. I had a good conversation with my line manager in the afternoon and we decided plans for the week.

I was very anxious when the babysitter arrived. She was staying till 9pm, then handing over to the new babysitter overnight.

This got worse and worse as the anxiety built. In the end i had a meltdown after my bath and the new bed got its first kicking.

I dont like loosing control, but it’s what happens when the demands outweigh energy and i can’t escape. I’d tried every strategy i knew but i couldn’t stop it. At least i don’t lash out at people, i direct it into my bed and then curl up with lion.

By the time the new babysitter arrived, i had calmed a little but was still very anxious. I don’t feel all that comfortable with the new lady. Logically, i like her and trust her, but my body doesn’t feel safe and it’s a battle to stay calm.

In the end i spent half the night sat behind the bedroom door, then i barracaded the door with heavy lego boxes. I got about 3 hours of sleep.


Tuesday morning i was awake when the babysitter left at 6am. I wasn’t sure what to do. The Cafe where i felt safe wasn’t open for another 3 hours. I did the best i could do and snuggled lion in my bed and listened to a podcast.

Podcasts work well for me, its like listening to some freinds discussing an interesting technical topic. That REALLY helped me to pass the time. Familier voices help me feel safer in a way an audiobook or a TV show do not.

I dozed on an off and then i went through my morning routine. I did my best but missed most of it.

I was meeting my friends mum for early lunch, so i headed to the cafe very slowly at 10am or so. I was really struggling. There is some stairs for the subway and i had to go up them one foot at a time. My body was extremely unhappy.

I’d spent about 3 hours shaking the night before. I eventully stopped shaking and thats when the pain starts.

Tuesday i started taking some basic pain killers just to managed the aches.

Lunch with my friends mum was good. I was extremely tired and she ended up buying me breakfast. It was difficult to cut anything up as my hands were numb.

We stayed most the day, i went home again about 3pm. When i got home i dozed a bit more and i did some reading. I also managed to go through my work email. I started to perk up.

The babysitter visited at 6pm and the routine was a welcome relief. It was such a joy to be free of the pressure. To be able to relax and feel safe, following my evening routine was great.

My friend arrived to look after me overnight and we watched some TV and i fell asleep on him!


I slept really well Tuesday night. Wednesdays was an interesting day. Still recoverying, but with a new challenge. The new babysitter was visiting again to look after me in the morning for an hour.

I let her in then hid in my room. I was very anxious and i didn’t really let her help much. I do this when i am unsure or feeling unsafe. I need to be in control.

Her visit was better than being alone (we got my entire morning routine done in an hour!) but it used lots of spoons.

I went to the cafe, did a bit of work but as the day wore on got more and more tired and frustarted. I wanted to do things my body wouldnt let me.

By the afternoon i hit the second dip in the recovery from Tuesday. Alone at home all afternoon was extremely hard and by the time the babysitter arrived at 6pm i was struggling again. I was very grumpy and upset.

My friend arrived at 9pm, he put me too bed shortly after. In a way grumpy is good, grumpy is actully a stage in recovering. It means i’m getting more energy.


Wednesday night was a mess. While i’d gone to bed very tired i just didn’t feel right. Very worried about the future.

I had some very terrible dreams. I was so scared i was unable to move or scream. I then fell asleep again but woke up in pain again.

I got about 3 hours sleep during the night and another hour in the morning.

The new babysitter visited again to look after me for an hour. That visit went better, i was too tired to be in control. She did a good job. I lost my phone and trousers so by the time she left i’d not finished my morning routine.

It then took another 2 hours before i was ready to leave the flat. I walked to mothercare and stayed there till 3pm. I got some work done, but not a huge amount. I helped someone out with some research and i started writing this article.

After mothercare i headed back for the evening visit from the babysitter. I was feeling highly anxious again and was very unsteady on my feet.

The afternoon was miserable. The anxiety was building fast and i was exhusted. By about 5:30pm i was asking for ways to avoid the overnight visit. I just couldn’t see anyway for it to end well. I was already managing a meltdown, i was desperate.

I stayed the night with freinds and slept for a good 12 hours without waking. My first night of uninterupted sleep in 5 nights. Feeling safe is important!


I woke up friday at my friends house, had my normal morning milkshake while planning my day. I slept 12 hours or so.

I felt much more relaxed, i still needed pain killers (my body takes longer to recover than my mind) but i was very glad i didn’t push even harder.

Friday morning i visited mothercare and started writing this post. Friday was a very painful day. I got a few things done. The babysitter visit went very well (really relaxed, yay!).

I then went back to my friends house, and fell asleep watching TV with them!


Saturday i slept in late, then went with my friend to get some car parts. On the way back we also popped into an Apple store for me to get a watch to try (topic of a future post!). In the afternoon i slept really well and we played Xbox in the evening up till bedtime.

I used pain killers all day so i could move.


Today (Sunday) has been super slow. I have been playing lots with the Watch. I have stopped taking pain killers today so i dont push to hard so am very achey and slow.

Im in mothercare to get some lunch and write this post, but i will go back to my friends to watch the F1, then walk home for my evening routine with the babysitter. Back to my freinds house for sleep.

Final Words.

This week has been so hard. I am really glad we aborted the overnight stay thursday. We are making some changes to make it a bit eaiser.

However, long term it is a good change. I have booked next week of work as annual leave to try and make it a bit eaiser. Its important i can get through this transition. Once most of my support comes from paid source i will have much more autonomy and so will my friends.


Spaced Out & Smiling is about exploring the fun side of Autism, and trying to understand what it means to be Autistically Happy.

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Jamie: @JamieKnight
Lion: @Lickr