Bed Life and Beyond

So it’s after 11pm now. I’m still wide awake. I take medication to help me sleep at night. Sometimes it helps. Sometimes it doesn’t. Sometimes it helps me sleep briefly then I’m wide awake again for the rest of the night.

Due to my childhood trauma I sleep easier during daylight. I like the silence of the night. I don’t mind being awake at night. If I didn’t have support workers coming here each day I’d actually prefer to sleep in the daylight and be awake through the dark. But I do have support workers coming here in the day, and sometimes have Zoom meetings with my care team and with disability services (called the National Disability Insurance Scheme here, NDIS, Australia’s public disability support system outside of hospital), and phone meetings, and my mother calls occasionally in the day, etc. So I do try to get some sleep at night.

I find it helps me to avoid bright lights at night if I want to get sleep later. So I dim the light on my phone which I’m using to write this, and I keep my lights off in my room, and only distant lights on in my house. I don’t like pitch black dark though. It also helps if I stay calm. As I’ve got complex PTSD, I’ve got a lot in my head which can easily make me anxious or panicky. So I distract like crazy, all the time, as much as I can with my energy levels.

Here’s a list of things I do in bed to distract and stay calm and help pass time. Some are easier than others.

• Watching Netflix with the volume as low as I can just hear the words still, with subtitles on, to avoid too much sound overwhelm.

• Writing this blog! 😂

• Playing games on my phone (sound turned off). At the moment I’m playing Cooking Diary, and two games where you build buildings and build a little empire. I don’t think the two latter games will last long with my tolerance. By playing two at once I don’t have to wait as long for things to be built. I keep leaving Cooking Diary then going back to it months or a year later. Warning: don’t spend money in it. I really don’t think it’s worth it.

• I’ve got a tub of small art supplies on a chair by my bed, so at my height. I can make tiny books out of the things in there when I’m up to it. I’ve also got two cases of alcohol markers on the floor by my bed to use. But reaching them is hard work and wears out my arms fast which makes them deteriorate in mobility. Sometimes I get desperate to create though. Creating tiny things is easiest as I don’t have to move my arms as much. My hands tend to work the best, most of the time.

• Reading on my phone, on my Kindle app, when I can concentrate enough. I haven’t actually read in ages now. I used to love reading psychology books but I can’t concentrate on them now.

• Going on Facebook. I’ve made some good friends in some groups I’m in, and I’ve reconnected with some childhood friends. I started a Page to post uplifting quotes and art etc. I used to post several a day. Now I just post any as I find them. I used to run mail art groups on Facebook but recently handed them over to Admins and Mods I brought in, because I got to the point I couldn’t even open mail, for months at a time. I still like keeping up with certain groups. Ones which are moderated well and are respectful and around interests I’m into.

• Looking at the BBC and ABC news apps. I enjoy science news. I like following what’s happening in the world. I avoid topics which distress me. There are a lot of interesting news topics too. You can filter your news experience on apps.

• I only keep up on Messenger with a handful of close friends, and occasionally with others. I didn’t have energy to chat with all the people who were messaging me there when I ran art groups, each day. I’d get about 17 messages a day, most asking me to do things for them. I‘m enjoying messaging more now I’m not running groups anymore. I’m happy to chat with people here via comments.

• I’ve got a brush so I can brush my cat. She loves it. I just hold it and she brushes her face against it over and over. Then she sleeps on the wheelchair beside my bed (especially if there’s a clean towel or clean blanket on it) or by my feet on my bed.

• I daydream a lot. I try to think of places I went as a kid that I liked. The sounds and smells and freedom walking. Or I think of the sound of rain falling. I love that sound.

• I write to my therapist. He lets me email him so he can keep up with everything going on in my life and my head between sessions. It helps a lot to write things and send them knowing they’ll be heard by him, or knowing I’m just getting them out of my head. He didn’t used to write back but he has a lot lately. Things have been busy lately (I’m in a long process of moving house, and I’m having difficulties with NDIS, the Australia-wide public disability supports).

• I text my teenager. They only text now. They don’t want to talk on the phone or FaceTime. Just text. So we text. They text especially lots before they visit. They’re visiting this weekend, so they’ve been texting extra lots. 🥰 I adore them!

• I look at Pinterest. My favourite thing to look at right now is Chinoiserie walls. It’s Chinese influence in design during the Georgian period. I have lots and lots of groups of pins in Pinterest.

• I look at Instagram. There are some super cute animals on there. I like watching pet foxes with their incredible tails!

• I’ve got a hospital over-the-bed table beside my bed, lengthwise. Along its edge closest to my bed are in order, medication extras, next dose medication, jar of blueberry jam, scissor handles sticking out, glass of water, plastic jug part-filled with water (so it’s not too heavy), bread and butter plate with a bread knife on it, and bread buns are on top of the little plate in a bag, then my phone lays beside that on the end when I put it down. I can easily reach everything on this edge of the table. Anything further back on the table can be brought closer to me by support workers when they’re here, if I need anything else. I can put jam on the fresh bread buns my support workers get each day, and eat that when I’m hungry. I’ve got disordered eating and prefer to eat restricted nutrition, so I’m happy eating the same food day after day. When my teenager is here I eat more varied food with her (to try to teach her healthier eating).

• I talk with my mother about once every week or two. She’s in her mid-seventies. If I ever have big news she’s the first person I want to tell. Her mind isn’t as sharp as it was and she’s had her own health issues but she still gets out close to her home and exercises a lot.

• I talk with my brother or sis-in-law much less often. They live interstate. They don’t handle me being noticeably unwell so I never call them when my speech is slurring from FND, or anything like that. I love them dearly. My sis-in-law is really creative and is a wonderful dressmaker, gardener and cook. My brother is really intelligent and is hilarious and is always doing some sort of interesting project. I always feel happy after talking with them. But they almost never call me.

• I don’t really talk with anyone else apart from support workers and people on my team supporting me. My socialising is mostly on Facebook.

• My therapist sometimes sends me photos of parts of his spectacular garden. I like to chat about the plants in it. I used to love gardening when I could walk.

• I used to go on Quora and answer questions for people about things I know about- mostly about psychology related things. Quora’s a website or app where anyone can ask any question and anyone can answer it. It’s a fantastic wealth of information.

• I go on The Mighty and answer some of their questions sometimes, and read some of their articles. That’s a great site/app for people living with chronic illnesses. It’s about each person getting through.

• I rarely listen to music because I quickly get overstimulated by noise. I really like some songs and some musicians, but can’t tolerate things like trumpets or trombones of cymbals clashing. I do watch some Stjepan Hauser videos softly sometimes. I like seeing him in concert. He’s a Croatian cellist.

If I think of anything else I do to pass time I’ll add it.

What do you do to pass time, if you live in bed close to 24 hours a day?

Here are some tiny books I made in bed using the tub of art supplies by my bed. They’re roughly 2 inches by 2.5 inches, or smaller.