#WeekendCoffeeShare (November 8, 2020)

Hi all on this sunny Sunday! Okay, it’s past 9PM here and the sun has set already, but it was sunny during the day. I should really have taken a picture.

I just had my last drink for the day. However, the beauty of virtual coffee shares is that people can join in whenever they want. So grab a cup of coffee, green tea or water. I’m pretty sure there are also soft drinks in the fridge, but I rarely drink those now. Let’s have a drink and let’s catch up. As usual, I am linking up with #WeekendCoffeeShare.

If we were having coffee, I would tell you that this whole week, the weather has been beautiful. It was a little chilly some days, but not as cold as you might expect in November. In fact, today, I even took a walk with my husband without my coat on. I did of course wear a fleece vest. It was sunny and almost warm.

If we were having coffee, I would tell you that I canceled my sister’s visit for this week too. The reason this time is a combination of the stricter COVID-19 management rules and my husband wanting to celebrate his birthday with me this week-end. With respect to the former, for example, my sister could be visiting with her husband and daughter, but three adults are not allowed together outside. This would mean my brother-in-law wouldn’t be able to go on walks with me and my sister. As if the risk of contracting COVID is higher outside than inside.

Also, I wouldn’t be allowed to go to my husband’s after they visited. Or maybe strictly speaking I could, but it’d be against the spirit of the lockdown. My husband felt pressured by me to let my sister and family visit, but eventually it became clear he’d really like to have me over for the week-end to celebrate his birthday. His birthday is on the 12th, by the way. So since my husband’s birthday is more important than a random visit from my family, we’re going to reschedule that sometime after the worst of the lockdown has ended.

If we were having coffee, I’d share that I gave my husband an Airfryer for his birthday. He made us both thick fries in it yesterday. Even though I’m pretty sure he didn’t salt mine, or at least not as much as I’d have done, they were still delicious. My husband joked that we’d have vegan fries (duh!) but to make up for it, we would eat real hamburgers. They were great too.

If we were having coffee, lastly, I would tell you that I was in a bit of a crisis this evening again. I got majorly triggered by a staff raising her voice as she commanded me to go to my room. She had intended for me to seek the quiet of my room, because I was rapidly becoming overloaded with all that was going on with the other clients. Her wording that I’m not the only one (I’m pretty sure she didn’t say it that way, but that’s how I interpreted it) triggered me to feel that I wasn’t allowed to feel the way I did and was attention-seeking. This then quickly spiraled out of control. Thankfully in the end, I was able to talk it through with the staff and also write down my feelings. I did take a PRN lorazepam, but that’s totally okay.

What’s been going on with you lately?

#WeekendCoffeeShare (November 1, 2020)

Oh my, it’s November already! Can you believe it? I feel this year is going both really fast and really slow. How about you?

Today, I’m joining in with #WeekendCoffeeShare. I’ve had three cups of coffee already today and it’s not even time for my afternoon coffee yet. Then again, I was up at seven o’clock this morning. I’m thankfully not too tired as of yet. Let’s have coffee and let’s catch up.

If we were having coffee, I’d tell you that the weather is surprisingly nice. We were supposed to get a lot of rain this week, but so far, it’s been raining only some of the time. This means I’ve been able to go out for walks everyday. I didn’t get in my minutes in active heartrate zones, because most of the time apparently I walked too slowly. I also went on the elliptical once.

If we were having coffee, I’d ramble a bit about my idea of restarting the polymer clay hobby. I did this for a bit some years ago, but never got beyond a child’s level with respect to my sculpting abilities. Then again, maybe if the day activities staff help me read tutorials, I’ll be able to progress somewhat further. I’m not yet 100% sure I’ll actually invest in yet another hobby that might turn out to lead to massive failure. Okay, I’m not a failure at soap making, but I’m not a success either.

If we were having coffee, I would moan a bit about my diet. I’m not sticking to it 100% of the time, but maybe I’m doing an okay job of it. I don’t know, since I haven’t been weighed in yet. I, however, try to remind myself that everytime I make a healthy food choice, I’m doing a good job of caring for my body.

If we were having coffee, I’d share that my sister, brother-in-law and one-year-old niece were supposed to visit yesterday. However, on Friday, I had a slight cold, which wasn’t fully gone yesterday morning. I also had felt slightly out of breath Friday evening. That’s probably just stress, but I canceled the visit anyway. Today I’m feeling as well as possible. We’ve rescheduled for next week.

If we were having coffee, I would tell you that tomorrow marks the thirteen-year anniversary of my mental crisis. I still find the month of November hard for this reason.

I also have been struggling with the end of daylight saving time. I’m more tired than usual and find myself going to bed very early and getting up early in the morning too. My Fitbit has noticed, as it said I seem like a morning person. I’m not. That is, right now, I’m mostly hibernating, in that even though I get up early, I sleep a lot during the day. I can’t wait for spring!

What’s up with you lately?

Gratitude List (October 17, 2020) #TToT

Hello everyone! I hope you’re doing well. I am feeling okay. I’m not sure I’ll continue with the #Blogtober20 prompts, but I will attempt to publish a post everyday anyway. That’s a way of participating in the challenge too. Today, I am writing a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful I am alive. Last week, I was in a major crisis. Though I most likely would’ve survived the attempt at harming myself I was intending on, I am so grateful I didn’t harm myself at all.

2. I am grateful for my staff. They’ve been so nice and helpful lately. They aren’t mental health professionals, but they do a great job of helping me understand why I’m feeling overloaded or anxious.

3. I am grateful that my husband supports me through it all. Like I said last week, I was afraid he’d be frustrated with me for landing in crisis. I am so glad that he didn’t react with irritation at all, even though I’d have understood.

4. I had some delicious treats over the week. On Tuesday, a staff gave us cheesecake for her birthday. There was still some left over on Wednesday too. We also got banana bread then. Then on Friday, we had delicious home-cooked chicken with curry and mayonaise. Today we had homemade chicken and sausage rolls.

5. My mother-in-law visited me on Thursday. We went for a walk and drank a cup of coffee in my room. She also brought me a new bra.

6. I am happy with my new Fitbit Inspire 2. I ordered it on Thursday and it arrived Friday early afternoon. I am loving seeing all my stats in the Fitbit app. For example, yesterday I got 56 minutes in active heartrate zones, all in the fat burning zone of course. I doubt I’ll be able to get into the cardio or peak zone at all.

The tracker itself takes some getting used to, since it has a touch screen, which I can’t see. I keep accidentally turning Do Not Disturb on.

7. I am grateful for relatively good food for dinner. As of last month, I am allowed to choose between a selection of meals for dinner. Before this, I had to turn off foods I didn’t like. This got pretty complicated. For example, I’d say I didn’t like beans because otherwise I’d get them with just potatoes and meat and no sauce. However, turning off beans would turn off chilli too. This led to me occasionally getting just rice, for example. Now I still occasionally get a meal I haven’t picked, but that’s okay too.

8. I am grateful for macrogol. And for apples and other fiber-rich foods. I had been constipated for a bit early in the week, which led to bad bowel cramps. Thankfully, I feel much better now.

9. I am grateful the partial lockdown we’re in right now doesn’t lead to a no-visitors policy in care facilities as of yet. I am grateful I am still allowed to go home to my husband.

10. I am grateful for the ability to be grateful. I started a daily gratitude journal in the app Day One on Wednesday. I did so because I downloaded a free book on gratitude off Amazon and the first exercise is to jot down three things you’re grateful for each evening for a week. It truly helps me so far, as without my gratitude journal to look back on, I may not have been able to get to ten things of thankful.

What have you been grateful for lately?

Home Sweet Home

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

Advice to Today’s High Schoolers

This week, one of the prompts over at Mama’s Losin’ It is to share advice you’d give today’s high school students. I cringed a lot at Mama Kat’s own post, as it was based on the idea that all high schoolers have parents who have their best interest in mind. I mean, I lied regularly as a teen. Though I wouldn’t advocate for that, it was all I could, because honesty led to harsh punishment.

I am not sure how much of my experiences was shaped by my neurotype, ie. being autistic. I mean, the main reasons I was ridiculed and punished harshly were because I was “weird”. However, there are lots of high schoolers who for whatever reason cannot follow Mama Kat’s advice, either because of their own situation or because of their parents.

For this reason, the main piece of advice I would give any high schooler is that it’s okay to be themselves no matter what. Whether your parents accept you, is something about them, not you. Do stand up for yourself if they are abusive or hurtful. You may be a minor, but that doesn’t mean your parents are all-powerful and all-knowing (especially that).

Also, seek out adult role models other than your parents. I felt helped a lot by being in contact with disabled adults. Even for neurotypical, non-disabled teens, it is useful to have people that inspire them other than their own parents.

Use social media, but of course use it wisely. There are spaces on social media for people just like you. Of course, I know most parents supervise their teens’ social media use and I think there is some good reason for that. Mine thankfully didn’t, but then again I was pretty careful not to engage in unsafe behavior online.

I do agree with Mama Kat that honesty is part of a good family dynamic. It has to come both ways though. As teens, it will help you to not give your parents reasons to snoop on your private life by being open about it. If your parents aren’t safe, seek out another adult to talk to.

What advice would you give current high school students?

Mama’s Losin’ It

A Trip to Berlin

Fandango has started a new challenge for the month of August and the prompt word for today is Trip. I’m going to write about a train trip my parents, sister and I took to Berlin in 2002.

At the time, you had this bargain called “schönes Wochenende” in Germany, which meant that for just €28, four people could travel all over Germany by train on a Saturday or Sunday. The only catch was that you had to take local railroads.

My parents, sister and I at the time lived in Apeldoorn, Netherlands, which isn’t too far from the German border. So we drove to Bad Bentheim to go on the train. The first train we took, drove us to Osnabrück. Then we took three more trains until we finally arrived at Berlin Hauptbahnhof. The last train we took, I remember, had Frankfurt an der Oder as its final destination. I found that fascinating.

I at the time had train routes as one of my autistic special interests. It was totally awesome learning all about the German local railroads.

The holiday in Berlin itself wasn’t a good experience. I had a lot of meltdowns and was pretty confused. I did like visiting a street called Straße des 17. Juni, because that year on 17 June I had first opened up about my distress that I’d suffered with for years. The street was named after a protest in east Berlin in 1953.

This was, actually, the last trip I took with my parents. The next year, I went to computer camp in Switzerland and the year after that, to blindness skills camp at the country’s training center for blind people. The year after that, I graduated from high school.

I feel pretty sad that I don’t have many memories about the trip to Berlin and the ones I do have, aren’t good. I guess trips rarely were enjoyable for me. That’s probably why I haven’t been on vacation with my husband in six years.

The Roles I Play

I haven’t been able to write much this week. I’ve been feeling really off lately. I may write more about that later. For now, I’m picking a prompt from the book The Year of You by Hannah Braime. It’s the first prompt in the book. It asks us to list the roles we play, such as daughter, sister, friend, etc. We’re supposed to think of as many as possible. Here goes.

1. I am a wife. My husband is the most important person in my life (after myself sometimes). My husband and I will be married nine years in September. The measures implemented due to COVID-19 were hard on our relationship. Tomorrow I’m for the first time in for months going to sleep at home with him.

2. I am a daughter. I don’t have the best relationship with my parents. It’s civil but distant.

3. I am a sister and by extension an aunt. I think now that my sister is a mother, we share even less common ground than before, but Janneke (my niece) is a good conversation starter.

4. I am a daughter-in-law and sister-in-law. Particularly with my mother-in-law, my relationship is good. She acts as my informal representative when needed.

5. I am a cat’s staff. I originally typed that I’m a cat Mommy or cat lady, but I think Barry sees me as nothing more than the one who provides him attention and food. Now I no longer do this, of course, as I no longer live with my husband. However, my husband says I helped socialize Barry.

6. I am a blogger. I have had one blog or another ever since 2007 (or 2002 if you count my online diary that gradually morphed into a blog).

7. I am a disability, mental health and autistic advocate. I don’t do nearly  as much advocacy work as I did some ten years ago, but I still identify as an advocate.

8. I am a long-term care client. Well, this is probably self-explanatory.

9. I am a friend. I don’t have any offline friends, but I cherish the online friendships I’ve made over the years.

These are mostly roles I play based on the relationships I have with people in my life. With respect to my interests, personality traits and opinions, I am still pretty unsure.

What are the roles you play in life?

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

What’s Up (June 2020)

Wow, can you believe it’s already the last Wednesday of the month? I truly can’t. Time flies! Today I’m joining in with What’s Up Wednesday.

What We’re Eating This Week

Well, like I said last month, I live in a care facility with food delivery, so I don’t get to meal plan. We’ve been having an insane amount of baked potatoes lately though.

What I’m Reminiscing About

Not really anything. I mean, occasionally memories pop up, but they’re usually neither pleasant nor significant to share about here.

What I’m Loving

Sunshine! The weather is truly beautiful out here. Tomorrow and Friday the temperature is supposed to rise to 30°C (86°F). That’s a bit hot for my liking, but oh well.

What We’ve Been Up To

Lots of walking! I loved taking several long’ish walks a day with my staff. Today it was a bit hot, but we managed two shorter walks anyway.

What I’m Dreading

My parents possibly being judgmental about my living situation. They will visit me for my birthday on Friday. As much as I try not to stigmatize my intellectually disabled fellow clients, I still fear they’ll feel shame.

What I’m Working On

I started working in the book DIY MFA yesterday and immediately was inspired to write a piece of short fiction. It’s not remotely good enough to go on the blog and it doesn’t have an actual ending yet, but I liked the writing process.

What I’m Excited About

My birthday! Tomorrow, the festivities will start with my mother-in-law visiting. On Friday, my parents will visit. That’s a little scary, but it’ll likely be okay. Then on Saturday, which is my actual birthday, my husband will be visiting. I invited him to get pizza delivered.

What I’m Watching/Reading

I’ve been watching Diagnosis on Netflix and reading the book by that same title, written by Lisa Sanders. I also finally started reading The Falling in Love Montage by Ciara Smyth. I’ve been excited about it ever since I first heard about it in like January. It was released earlier this month.

What I’m Listening To

I’m frequently listening to the Harp Music for Sleeping playlist on Spotify. It’s very relaxing. This afternoon, in fact, I fell into a deep sleep listening to it.

I’ve also been discovering podcasts. Early this month, I mostly listened to true crime podcasts. Now I’m occasionally listening to progressive Christian podcasts.

What I’m Wearing

A skirt and a black T-shirt. I have three skirts that are the exact same model yet a different color. As I am blind and haven’t labeled my clothes, I don’t know whether this is the blue, green or red one.

What I’m Doing This Weekend

Having pizza with my husband on Saturday, like I said. I’ll probably have a lie-in on Sunday.

What I’m Looking Forward To Next Month

Probably visiting my husband for a weekend again. Like I mentioned a few times, the visiting rules at my care facility will be relaxed come this Friday. This means I’ll be allowed to go home to my husband for a weekend again. I don’t want to right away, but I’m hopeful in July I’ll be able to go a few times.

What Else Is New

My husband has two weeks off work this week and the next. He’s getting workmen over to replace the outer doors and some other big things that need doing.

What’s up with you?