Last Friday, the prompt for Five Minute Friday was “born”. I assume many writers, being Christian, will have written about the moment of their salvation. Even though or maybe because I consider myself a progressive believer, I didn’t have such a moment. I was saved 2000 years ago. Rather, something else came to mind. Here goes.
I am still not done reading the book Preemie Voices by Saroj Saigal. It is a collection of letters from people born very prematurely between 1977 and 1982, which was published in 2014. One of the letters I did read, however, spoke to me.
In it, the woman said she was born three times. Once, when she was actually born. Then, when she was supposed to be born, so her due date. For me, this would be September 29, 1986. I was actually born on June 27.
Then there was her moment of rebirth in a spiritual kind of way, but dit didn’t have to do with any organized religion. Rather, she considered the day she was diagnosed as autistic to be her day of rebirth.
I am also autistic. For me, the day of my diagnosis was March 16, 2007. It wasn’t some type of epiphany moment though. My support coordinator at the time called the physician who’d assessed me because she hadn’t heard anything about the results of my diagnosis after my assessment was complete. Neither had I. She was told I had been diagnosed with autism and the report had been sent to my GP. How blunt!
I didn’t even dare write about it on my blog till some days later. It was so weird. Because I was diagnosed three or four more times, I never quite considered this day to be of any significance. Sometimes I wish I had such a moment of rebirth.
Okay guys, I’m still feeling meh. I don’t know why, but it doesn’t really matter. I’m not inspired to write much of anything either, so what better thing to do than to write a gratitude list? I don’t promise I’ll be able to mention many things, but I’ll try my best.
1. Ice cream. Last week Thursday, another home that’s part of the care facility called for an ice cream truck to come by the facility. The ice cream truck owners had owned some type of merry-go-round or another fairground attraction before COVID-19 hit. Then they transferred to the ice cream business as away of making money. They advertise themselves on Facebook for being on-call if you have enough customers in a street. I love this idea and obviously the care facility has some 70+ clients plus staff as potential customers.
What’s extra cool is that the other home called the truck people again on Tuesday. Now if I don’t have an ice cream tummy, I don’t know.
2. Reaching my step goal. I reached 10K steps three days this past week and so far got over 55K steps this week. Tomorrow I’ll probably have a lie-in.
3. An extra staff. Due to day activities now being provided at the home, the home staff were able to cut their hours a bit, because there was a lot of overlap with the day activities staff. As a result, they’re now able to have an extra staff for a few hours on Saturday. This morning, the extra staff took me for a 25-minute walk.
4. Bathing. This is one from last week, but on Sunday I took a bath. It was good and very relaxing.
5. Gutenberg. You know, the project that aims to digitalize no-longer-copyrighted materials and make them available to the public. I discovered yesterday that my reader app, Voice Dream Reader, connects to it too. I was able to download Anne of Green Gables by L.M. Montgomery off there. I think I prefer reading eBooks to audiobooks anyway.
6. Buying a new iPhone. I have been wanting to buy the new iPhone SE 2020 forever. That is, I’ve been looking at the possibility of it being released for at least half a year before it was released. My current iPhone, the old SE model, still works, but its battery is empty really quickly. Today I ordered the new one.
Originally, I had wanted my husband to install it. Then when I was skyping with my sister and mother, my brother-in-law chimed in and said it’s really easy to migrate from one iPhone to another. Now I may want to install the phone myself as soon as I get it and there’s someone sighted to oversee it.
7. Hearing my niece on Skype. Like I said above, this afternoon I Skyped with my mother and sister. It was fun. I hadn’t even had Skype on my computer till then, but I like it. I heard my niece on the other end of the screen. She did get a little whiny eventually, probably because she was hungry.
8. Seeing my husband! I saved this one for last, as it’s the best. Last week, the no-visitors policy was lifted at my care facility, so I was able to see my husband. He visited me again today. Like I said before, we can’t really be physically close, but it’s okay. I love you, hubby!
That’s it for now. As always, I’m joining in with Ten Things of Thankful (#TToT).
Today I feel a bit meh. It’s probably due to the fact that it’s a long week-end due to today being the Friday we don’t have day activities and Monday being second Pentecost here. I don’t like long week-ends. I’m too inactive then.
That being said, I did discover a few things I’m loving lately. Let me share. I’m doing this in the classic editor again, as somehow the block editor would automatically convert my stuff to a list when I didn’t want it to.
1. Podcasts. On Wednesday, I wrote that I’d been listening to a playlist on Spotify mostly as well as an audiobook on Scribd. That evening though, through another blogger, I was inspired to try out podcasts. Unlike audiobooks, I actually love these.
I particularly love listening to true crime podcasts. Seriously, I had no idea there’s so much evil in this world that there’s a whole category of podcasts dedicated to it. Parcast Network has a ton of interesting podcasts.
Aside from true crime, I decided to look at what else is on. I discovered Parcast has a podcast called Mythology too. It was awesome listening to the most recent episode.
2. Music. Well, I said this already on Wednesday, but the Pop Warm-Up 130 BPM playlist on Spotify is great. I’m truly loving dancing to it.
3. Essential oils and fragrances. On Wednesday, my essential oil diffuser somehow decided to bite the bullet. Its on/off switch is stuck, so I cannot get it working. I asked for a new one for my birthday. Still, my husband will be looking at this one to see if he can fix it.
This did get me looking at lots of new fragrances I may want to buy. I have a lot already, but you can never have enough of those.
4. Coffee. I gave my coffee cups to the staff a few days ago because I was having impulses to break them and injure myself with the shards. This morning though, I felt a little low and in need of some caffeine. I got one of my cups and made myself a Senseo coffee. It was lovely sitting in my recliner listening to the Mythology podcast while drinking some coffee.
5. Tomatoes. A staff who’s been on sick leave for half a year or so, returned today for a few hours. When she was still working at my home, we’d built this tradition of her bringing me snack tomatoes, which I kept in a tomato-shaped box I’d gotten from her. Today she continued the tradition. I loved it.
Last Monday, I already shared some memories from the year 2003. Today, one of the prompts over at Mama’s Losin’ It’s Writer’s Workshop is to share a twelfth grade memory.
My senior year of high school was the year I was supposedly planning on going to university after graduation. I knew this was going to be hard, but my aversion to going to college straight out of high school, didn’t really form. Besides, I had no idea what else I was going to do. I remember one day, August 31, 2004, one of the first few days of the school year. I had already come out as dissociative (multiple personality) on my blog in March, but had only been aware of three alters at the time. That day, Carol, who was up to that moment my assertive helper part, gave up and a new one, who called herself Clarissa, emerged.
I wasn’t aware at the time that what I was experiencing was an actual mental health diagnosis, mind you. A friend of mine had told me about dissociative identity disorder after I first came out in March of 2004, but I was still in denial. Part of the reason is that one criterion of DID is amnesia, which we rarely experience.
In March of 2005, my high school tutor had arranged for me to see a blindness rehabilitation center psychologist. The high school tutor, I must say, read my blog, so he knew about the parts, including Clarissa. He had told the psychologist, who obviously immediately thought of DID. She started to ask me all sorts of questions, all of which I either circumvened or answered negatively to. I knew, after all, that, if I’d gotten the psychologist to think I had DID, I wouldn’t be accepted into the rehabilitation program.
In hindsight, of course, I wish I would’ve been more honest. I knew I didn’t have amnesia or time loss, but I did have most other symptoms of DID, some of which I hadn’t become aware of being abnormal. It took over five more years before I was diagnosed with DID.
In the end, I was accepted into the rehabilitation program. I started on August 22, 2005.
Full disclosure: after being diagnosed with DID in 2010, I lost my diagnosis again in 2013. I am pretty sure I don’t have full-blown DID, but probably do have some dissociative disorder.
Today, I discovered What’s Up Wednesday and thought I’d join in. What’s Up Wednesday is a monthly linky in which bloggers recap their past month. Here goes.
What I Ate
I don’t meal plan, as here at the care facility, we get meals delivered. I didn’t have the greatest meals this past week. Last week Wednesday, I had a fish curry that had fish bones in it. I ate part of it nonetheless, but eventually got annoyed and left the rest. My husband told me that this was unacceptable indeed. My staff sent out a complaint.
Then on Friday, I had vegetable rice only. Vegetable rice is just rice with a tiny bit of veg in it. I had no meat or meat substitute in my meal at all.
Thankfully though, over the past few days, the food was okay.
Then yesterday, my day activities staff and I put hamburgers on some type of grill for lunch. It was delicious!
What I’m Reminiscing About
I haven’t had the best month with respect to my mood. For this reason, a lot of memories have come up. I have been discussing some in my sessions with my community psychiatric nurse and also writing about them on here.
What I’m Loving
Being able to see my husband again! Due to the coronavirus lockdown, my care facility had a no-visitors policy for the past two months. Thankfully though, the policy was lifted last week. My husband and I still can’t have physical contact or even be within a five-feet distance, but it’s okay. I’m just so glad to meet my husband in real life again.
What I’ve Been Up To
I’ve been doing a lot of walking over this past month. The weather is really good. We had one rainy day, last Sunday, but overall it’s been really sunny and warm outside.
I’ve also been blogging a lot over the past month. I’m so glad to keep up the productive spirit!
What I’m Dreading
Nothing really. I did have a rough few weeks and was dreading a crisis happening again. Today is a pretty good day though. The tech guys installed the door sensor that will alert the night staff if I elope again today.
What I’m Excited About
Seeing my husband again this Saturday!
I’m also excited about getting Italian takeaway this Sunday. I’m probably going to get a tuna pizza.
What We’re Doing This Weekend
It’s a holiday weekend here in the Netherlands because of Pentecost. For this reason, we’re getting lots of extra treats at the care facility. Other than that and seeing my husband, I don’t have much planned.
What I’m Watching
Nothing to be honest. I’ve been thinking about getting a Netflix subscription again, but haven’t gotten down to it.
What I’m Reading
Nothing at the moment, but I did finish two books this past month: Wonder by R.J. Palacio and Wink by Rob Harrell. I reviewed that last one earlier this month.
What I’m Listening To
I’m mostly listening to the Pop Warm-UP 130 BPM playlist on Spotify. I actually love the upbeat, fast-paced tunes to “dance” to.
I also got myself a ScribD subscription, though I unsubscribed again after a few weeks. I listened to Anne of Green Gables as an audiobook on there. I must say I don’t think I see the benefit of audiobooks.
What I’m Working On
My birthday wishlist! I asked my husband to help me install a new iPhone that I’m goign to buy. I haven’t bought it yet, but am looking forward to doing so in a few weeks.
I’ve been looking at a sensory supplies store again for birthday gifts to ask my in-laws, parents and sister. I think I want a Jinglin’ ball. This is a soft ball that makes a sound when rolled. The adaptive supplies store for the blind also sells ringing balls, but these are too hard for safe playing with my fellow clients.
What I’m Wearing
I have had this orange dress for a few years already, but hardly ever wore it before going into the care facility, because I can’t fasten the ribbon. I am loving it though. I also asked my staff to do my hair for this picture.
What I’m Looking Forward To Next Month
My birthday, obviously! It isn’t till the 27th of June, so we’ll have another What’s Up Wednesday before that, but oh well.
Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.
I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.
In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.
In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.
What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.
The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.
This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.
In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.
In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.
Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.
It’s been a while since I last did a post talking about one of my medications. Today, I want to talk about one I’ve not used in a while: promethazine or Phenergan.
Phenergan was the first PRN medication I got prescribed while in the mental hospital. I remember clearly the state of mind I was in. I had been irritable for most of the afternoon and finally burned my hand using boiling water. This act of self-harm got the nursing staff to fetch the physician. I apparently had a smile on my face when I disclosed my having self-harmed, so he said there was nothing to laugh about. Obviously not, but I struggled to express my emotions. He offered me a PRN medication. I’d heard of Phenergan before and what I’d heard about it from autistic people, wasn’t good. However, I still agreed to take it.
Phenergan, for those not familiar with it, is a low-potency classic neuroleptic. It is currently mostly used as an antihistamine to treat allergies and such.
That evening, I was totally wiped out from the effects of the medication. I just lay on the couch or in bed feeling stoned out of my mind. That was what I needed at that point.
After that, unfortunately, I was prescribed oxazepam as my default PRN medication. Some years later though, I got prescribed Phenergan again after I’d pretty much exhausted all benzodiazepine options.
Unfortunately, by then, Phenergan did nothing. I only took it to make myself and others feel like I was doing something about my distress. At one point, my new psychiatrist once I was living with my husband, even suggested I swap it for a vitamin C pill so that I would still have the placebo effect but not the side effects. Not that I was having any side effects.
A few months later, however, I took an overdose of Phenergan that landed me in the general hospital. That was when I decided not to request a refill of the Phenergan. I by that time had lorazepam, which worked some but of course had the addictiveness as a negative. However, I’m not supposed to take PRN medications regularly anyway.
So last Friday we for whatever reason landed in a bit of a crisis. Our husband would be visiting us on Saturday and for some reason, we convinced ourselves he was coming to say he wanted to break up with us. Like I said yesterday, it turned out he wasn’t. He’s such a great hubby!
The night staff checked on us at around 10:45PM. This had been agreed on after our crisis last week, because we were scared to press the call button at night. We told the night staff that we were anxious. She tried to tell us to try to get some sleep. Obviously that didn’t work out.
After we’d been going on the computer for a bit, we decided to E-mail our husband. Then, for some reason, we eloped and wandered around outside of the care facility for a bit. We after about half an hour tried to find our way back, but the doors to our home and to all other homes were locked. We started to scream out for help and finally, the sleepover staff heard us. She and the night staff came to our rescue. Of course, we were asked why we hadn’t pressed the call button. So far, I have no idea.
Then yesterday evening, we were watching a video on the Dutch Center for Consultation and Expertise website. It was about a young woman with severe attachment disorder. In the midst of it, our staff came into our room for something, I can’t remember what. We got really agitated and that’s when I realized this might be a relatively new alter. The girl in the video was called Deborah, so that’s the name this new one chose.
What is so unique about her, is her tendency to “test” the staff’s willingness to help us. Some of us, and this may include her, get triggered when we perceive we’re getting less help than we think we need. Some of us express this appropriately, but Deborah doesn’t. She, rather, gets really agitated and self-destructive. Unlike the Deborah in the video, she hasn’t been aggressive towards others as of yet, though inside she definitely feels like it.
We discussed Deborah’s needs with our assigned support worker just yet. She tried to reassure us that we don’t need to leave the care home. Deborah is lucky that she had me (Clarissa) nearby to explain.
Our staff will have a meeting with the behavior specialist and physician tomorrow to discuss our care. We may get a door sensor, which alerts the night staff when we leave our room. After last week’s crisis, we also gave some of the things we were thinking of using as self-harm tools to the staff. This should hopefully be enough, though Deborah’s behavior is in some ways getting worse. We hope it doesn’t get so bad that we need more support than our home can provide.
Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.
I mean, I always say that Jeroen is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.
Yet, whenever I say I love Jeroen more than myself, I think: “So why did I choose to go into the care facility?”
I was fully expecting my husband to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my husband anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!
Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.
I look forward to seeing my husband tomorrow. The visiting rules for nursing homes were relaxed in prime minister Rutte’s latest speech on Tuesday. The new regulations wouldn’t take effect till next Monday, but my care facility decided to allow visitors from this Thursday, the day of Christ’s ascension and hence a bank holiday, on.
There are still strict guidelines. Visitors cannot touch clients or even be within five feet distance. We’re not allowed to travel in the car with our visitors or go to public places such as shops or snack vendors.
My husband was a little disappointed at the strict guidelines, and I wholeheartedly agree. Of course, I want to hug him too. After all, we haven’t seen each other in real life in over two months. Too bad we can’t at this point. However, it’s better than nothing.
I look forward to hopefully spending some good time with him. Hopefully, of course, the rules will be relaxed even more soon. That’s still unknown though. As far as I know, our care facility is already less strict than what Rutte said, as he said only one person per client can visit. Our facility allows two at a time. Not that I need that, as my parents or in-laws are a long way from visiting me, but oh well.
Wow, I actually finished writing this in five minutes flat. Thanks so much for reading.