My Perfect Lover

Posted on by Astrid

I think my husband is perfect. He is the ever-most-beautifullest, ever-most-lovablest
person in the world. That’s why I chose him as my lover.

My husband and I can finish each other’s sentences and it doesn’t get annoying. Or sometimes it does. Then we say “banana spider” and the other knows we’ve bored them out of their mind.

We joke that, when we get old and suffer with dementia, only the two of us will still understand each other, since we have so many special phrases and words between the two of us. At least I hope we’ll have something to laugh at ourselves about then.

Honestly, it’s too bad that my blog is in English and my husband and I communicate primarily in Dutch. After all, our expressions sound even better (or should I say even weirder?) when written or spoken in our native language.

Written for Twiglet #257: “Even Better” and FOWC: “Lover”.

House Inspection

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to tell us about a time someone showed up at your front door. Since I no longer live in regular housing since moving into the care facility, no-one ever shows up at my front door unexpectedly and, if they do, the staff will open it for me. When I still lived with my husband though, several times, people would show up at my front door unexpectedly. Not salespeople, thankfully. However, my experiences with the housing corporation were so bad that my husband actually asked me not to open the door. I always reflexively did anyway.

One time, the housing corporation, or I’m assuming some technical company sent by them, showed up when I did expect them. They were supposed to be repairing our gutter, but asked a ton of questions about where the problem was located and what kind of gutter we had. I had no idea and the people said they couldn’t just climb onto the roof and have a look. I called my husband to inquire, but he didn’t answer the phone, so they left without having done anything. This encounter led me to get into a mental crisis.

The first time the housing corporation showed up unannounced was in early August of 2017, just two weeks after the gutter repair guys had showed up. They came to ask us to weed the path behind our backyard. I had no idea there even grew plants there, but, under pressure, agreed to ask my husband to do it within a couple of weeks. Apparently, the back neighbors had been complaining, since I don’t expect the housing corporation to come out from the town to check on our tiny village house for no reason.

The other time was in September of 2019. My husband had scheduled the final inspection of our home for the 26th, when I’d be at the care facility and he’d be home alone. However, they showed up a week early when I was home alone. I was sleeping when I heard the doorbell and felt I had no time to dress into my day clothes, so quickly ran downstairs to open the door.

I told them they were a week early, but they insisted they take a look around “now that we’re here anyway”. After their inspection, they asked me to sign a document. I initially refused, but they insisted I am a renter too (I was). Then they asked: “Can you read?” I explained that I can, but not print, since I am blind. “There’s nothing to worry about in this document,” they told me. In my overwhelm, I signed and sent them on their way. My husband did complain about the way they’d treated me this time and it was my final reminder of why I want to never live in regular housing again.

Mama’s Losin’ It

#WeekendCoffeeShare (November 21, 2021)

Posted on by Astrid

Hi everyone. Today is a rather mixed Sunday weather-wise. We had sunshine almost all morning and early afternoon, but now we’re having clouds and rain. I’m joining #WeekendCoffeeShare today. I just had a late afternoon coffee (I normally have them at around 2:15PM and it’s almost 3:30 now). I am likely to skip my soft drink, which I normally have at around 3:30, and have some water again when my one-on-one comes on at four o’clock. If you’d like a drink, you’re welcome to grab a soft drink or water or get a Senseo in the kitchen. Let’s catch up.

I already shared on Friday that this week was a rather meh one. So, if we were having coffee, I’d try to focus on other things. I’d share that I’ve been trying to pick up the polymer clay craft again. Yesterday, I finished three labels with “Bedankt” (Dutch for “Thanks”) on them for the three staff who are leaving soon. I still need to cure them in the oven and add glitter glue for decoration. I’m probably going to do that this evening.

I will still need to make real presents for each of the three staff, because I don’t think just a simple label, even if it’s hand-made, is enough. One of the staff is leaving at the end of this month. The other two aren’t leaving till the end of December, so I still have time for those.

If we were having coffee, I would share that I’ve been oohing and aahing at some polymer clay supplies I want to get for Christmas or St. Nicholas (December 5). You need to actually pay for your own St. Nicholas presents, but I agreed with my assigned staff that she could spend around €15 on them and I’d send her a wishlist which she could pick something from, so that I’d still feel a sense of surprise. We do get a small Christmas hamper from the day center, so I told my day activities staff she might talk to my assigned home staff about ordering from the same company as to save on shipping. Some things on my wishlist include cutters, pushmolds and texture sheets.

If we were having coffee, I’d tell you I bought a new essential oil diffuser. I couldn’t seem to clean the other one properly anymore, so all scents were starting to smell the same. I made a note in my Reminders app to clean this one each month, but with how often I’m currently using it, I’ll probably make that every other week. The new one has a remote and two mist settings for normal and strong mist.

If we were having coffee, lastly I’d share that my husband came by to take me out to lunch this afternoon. We’d talked about going to a particular snack and dine place we’d been to two years ago and I’d looked forward to it all week. It was really good back then. Now, not really. The burger we ordered was okay’ish. Not very bad, but not good either. In addition, we had to wait forever to place our order and the staffer really was quite curt. This time, we were asked for our CoronaCheck code, but not our ID, as is required. Oh well.

How have you been?

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

We Are Cinderella!

Posted on by Astrid

Hi all! Today, I discovered Throwback Thursday. Well, I had heard of it before, but always assumed it was an image-based blog hop, as this is what the term usually means. Not so in this case. Lauren and Maggie’s Throwback Thursday allows us to write a post taking a stroll down memory lane. I’m pretty sure photos are allowed, but the main focus seems on writing. Today’s topic is nicknames.

I have had many nicknames throughout my life. Some are derived from my name. For example, many people simply abbreviate “Astrid” to “As” and my spouse and in-laws then add the commonly-Dutch “-ie” suffix for “little”, so my nickname becomes “Assie”.

Then there are these nicknames that are based on some letters out of my name but not many. An example is the Dutch word “asbak” (which translates to “ashtray)”. I hate that nickname with a vengeance.

Another one is “Assepoester”. This is the Dutch name for Cinderella in the fairytale. I don’t like the Dutch nickname, but I for one do relate to Cinderella, particularly to the feeling of having to be transformed by a fairy (ie. put on a mask) in order to be acceptable as I am.

For this reason, I sometimes still use Cinderella as my nickname. That is, I do so when referring to myself and my multiple alter personalities (dissociative identities) as a system. Usually, I refer to the collective as Astridetal, as in my blog’s URL, but at one point we felt somehow like we needed a collective name that didn’t claim that Astrid was the “owner” of everyone else. So Cinderella System was born!

Did or do you have any interesting nicknames?

The Best Decision of My Life

Posted on by Astrid

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

#WeekendCoffeeShare (October 24, 2021)

Posted on by Astrid

Hi everyone. It’s really sunny out this Sunday afternoon! How about you join me for #WeekendCoffeeShare. I had quite a lot of coffee so far today, as I went out to McDonald’s (well, through the drive-through) with my husband for lunch and had coffee there. It was better than the coffee I had at Subway last week. Then when I came back to the care facility, I had a cup of coffee again. If you’d like a cup of it too, I’m pretty sure there’s still some left, as my staff said her colleague had just made a fresh pot. Let’s have a cup of coffee and let’s catch up.

If we were having coffee, I’d almost invite you to the balcony. It’s sunny, after all, but quite cold. Besides, the balcony is covered in fallen leaves. So I guess we’ll sit indoors after all.

If we were having coffee, I’d share that I managed to get in 12.5K steps yesterday. That’s a huge win, as I had thought my physical condition was declining slightly. Apparently not.

I also went on the elliptical for half an hour on Friday and am planning to go onto it for another 30 minutes later this evening.

If we were having coffee, I would tell you that all this is slightly comforting in light of my probable IBS symptoms and the upcoming abdominal X-ray. I mean, if it’s something very serious, I guess I’d have other symptoms, such as unexpected weight loss or declining physical fitness. Please all still pray for me that the X-rays will show something easily treatable.

If we were having coffee, I would share that my husband bought a new car. Well, he’s going to exchange it for our current Volkswagen Golf on Wednesday. It’s a Daihatsu Cuore, a very small car. His VW is still in relatively good shape, but both of us wanted a cheaper car with respect to gas usage, insurance and tax. With the deal he got, my husband says he’ll have saved enough on these to cover the cost of buying the Cuore within the year. I must say I feel a lot better about this car than I felt back when my husband bought the VW.

If we were having coffee, lastly I would share that I woke up after a nightmare early this morning. It wasn’t yet time for my one-on-one to arrive, so the morning staff helped me put on my music pillow and settle back to bed. I thankfully slept well for about an hour and a half after that. I am really hoping this means that the topiramate is working. I mean, my nightmares aren’t your standard scary dreams and as far as I’m aware, topiramate doesn’t suppress REM sleep altogether, but it does seem to make it easier to let go of anxiety-inducing dreams.

How have you been?

Gratitude List (October 22, 2021) #TToT

Posted on by Astrid

Hi all on this mixed-bag Friday weather-wise. It’s cloudy with some rain, but the sun tries to peek through here and there too. I seem to have given up on the blogging challenges entirely, but I’m still attempting to write as often as I comfortably can. Today, I’m doing a gratitude list. I’m joining Ten Things of Thankful (#TToT) as usual. Here goes.

1. I am grateful my staff, the one who is on sick leave, was happy with her presents. Like I mentioned before, I gifted her a handmade soap, hand cream and bracelet. Another staff delivered it to her house as to allow me to save money on postage. The staff who is on sick leave, later texted the other staff an audio recorded message for me. It was so sweet!

2. I am grateful for my nurse practitioner and community psychiatric nurse. On Sunday, I landed in a bit of a crisis and E-mailed them, along with my assigned day activities staff and my support coordinator. My nurse practitioner responded on Monday. Though I felt like he was downplaying my crisis a little, my CPN later said that she at least felt that I was doing well because I asked for help.

3. I am grateful my GP takes me seriously. This really could’ve been a grateful for last week, but I forgot to mention it then. As regular readers of this blog might know, I’ve suffered with what doctors think is irritable bowel syndrome with constipation for years, but it’s gotten worse and somewhat different over the past nine months or so. I saw my GP about it a few weeks ago and he initially sent me home with orders for the staff to fill out a rating scale on my bowel movements. Boy, was it embarrassing having to ask the staff to look at my poop! Thankfully, it did show that I hadn’t been misguided about my symptoms. Last week, we went back with the rating scale and the doc examined me again. After discussing me with the gastroenterologist, he decided to refer me for an abdominal X-ray. It’s been scheduled for this coming Tuesday.

4. I am grateful for my husband’s ability to put things into perspective. I have been worried sick (no pun intended) about the possible outcome of said abdominal X-ray. My husband though said that, since I’ve been having symptoms for as long as he knows me, it’s not likely to be anything serious.

5. I am still grateful for topiramate. The increased dosage does seem to do something in the end. Last night, I had dreams about leaving the care facility, but they do not seem to affect me as much as they used to. I call that a win!

6. I am so grateful for one-on-one support. I cannot say this often enough. I am so very grateful my staff aren’t leaving me when I’m in crisis.

7. I am grateful the chili con carne I had for dinner yesterday was better than I expected. I hadn’t had meal delivery company chili in a while since it’s part of their fall/winter menu. However, I’d remembered it as dry rice with dry beans and a tiny bit of mince thrown in. To my surprise, they’d actually added some sauce and there was more mince in it than I expected.

8. I am grateful that the people who were installing blinds on my side of the building, are finally done doing so. Originally, only the other side of the building had blinds on the outside, but some of my fellow clients suffered badly from the sun shining through their windows during the day especially in summer. It took the company several weeks of installing the blinds and they had to be in each room to program them too. Thankfully, they programmed mine to manual, not automatic. Otherwise, if it’s sunny, the blinds will go down, then if a bit of wind blows they will go up, then down again, up again, etc. I’d rather keep them up and just draw the curtains when it’s sunny.

9. I am grateful that, when they were working on my blinds this afternoon, my one-on-one took me to the snoezelen® room at the day center. After all, the noise was quite unbearable. I loved lying on the waterbed while there was no-one in the adjacent room. So nice!

10. I am grateful I had the energy to go on the elliptical for over 30 minutes this afternoon. When I first stepped onto it, it felt as though I’d hardly manage 15 minutes, but I did pretty well.

What are you grateful for?

#WeekendCoffeeShare (October 17, 2021)

Posted on by Astrid

Hi everyone. I’m rather late joining #WeekendCoffeeShare this week and I’m afraid there’s no coffee left. You can help yourself to a soft drink or a glass of water though. I also have chips in my cupboard. After yesterday’s crying fit over there only being the wrong flavor left, I decided to buy some myself. I did ask the staff to put them into a cupboard which they only have the keys to, but I’m pretty sure they’ll love to open it for you. Let’s have a drink and a handful of chips and let’s catch up.

If we were having coffee (or a soft drink and chips), I’d share that this week is still quite meh. Early in the week, I was feeling a little more optimistic at the prospect of starting my increased dosage of topiramate soon. I started it on Friday and so far, unfortunately, no change. I am grateful though for no side effects either.

Over the weekend, I’ve really been struggling. I landed in a bit of a crisis earlier this evening, but thankfully pulled myself out of it. I did E-mail my nurse practitioner and CPN at mental health to let them know I’m worried about deteriorating. My husband said I’m not, but the fact that I keep increasing my meds, tells me otherwise

If we were having coffee, I’d moan about my orthopedic footwear after all. The shoes squeak and, though I’m still not in terrible pain, I cannot walk for more than twenty minutes on them without them feeling horribly uncomfortable. Mostly my left foot, the foot on which I wear the AFO, starts to drag. I haven’t heard back from the physical therapist, but am pretty sure she’ll just say I need to push through.

If we were having coffee, I would show you all the soap I made for my assigned staff, the one who’s on sick leave. I heard last Thursday that she’ll remain off work until the middle of November or so due to among other things her needing to use up all her days off for the year or they’ll disappear.

Like I said yesterday, the soap contains vetiver, lavandin and clary sage essential oils. I decided to use a white soap base and no colorants, because I felt the scents would speak for themselves.

If we were having coffee, lastly I would share that my husband came by today. We drove to Subway for lunch. I dutifully wanted to get out my CoronaCheck app, but my husband told me to wait. As he expected, they didn’t ask us for it. The taco beef wrap I chose, was rather boring and I’m pretty sure the mince they put in it was vegetarian rather than beef. Oh well, now at least I know what not to choose next time.

How have you been?

Loneliness Comes From Within: Some Reflections

Posted on by Astrid

I am still struggling badly. I have been having flashbacks of the time when I lived on my own in 2007. When I told my husband this tonight, he asked whether any traumatic events happened there. Not really in the classic sense of the word, but I did suffer intensely. The “cage”, as I called my apartment, was a filthy, dark and gloomy place. Neither I nor anyone else had ever thought of making it into a home.

I was intensely lonely during the three months that I lived in that place. Nonetheless, people did reach out to me. I was in touch with several of my fellow students in the linguistics program at university, one of whom lived in my housing complex too.

When I mentioned this, my husband said that loneliness rarely comes from the environment. It wasn’t that no-one cared, as had been the case during most of my high school years. In fact, multiple people reached out to me, but I was closed off to contact with others. I was so convinced that I was unloveable that I didn’t attempt to form genuine bonds with people.

Sadly, it’s still mostly this way. Just a few days back, I was telling my husband that all caring staff eventually leave, referring to the idea I’ve gotten in my head that my assigned staff is not coming back. Indeed, a number of staff have left in the past or told me they had to distance themselves from me due to my behavior. However, a number have stayed too. In particular, my support coordinator from when I lived with my husband, stuck by me till the end.

Of course, staff/client relations are different from friendships. Staff might leave for reasons that have nothing to do with me. Others will come in their place, sad as it may be. Friends though will not necessarily be replaced. And that’s where it hurts more: I feel intensely incompetent at forming friendships.

I mean, though I did have contact with fellow students and people in my housing complex while living on my own, I mostly sucked up their energy. I feel intensely sad about this. I still feel like I’m not able to make friends ever at all. However, there is hope. Now that I (hopefully) am in a stable living situation, I may be able to build on some genuine friendships after all. I already consider some of my fellow clients my friends. I don’t need to rely on them for support, as I (hopefully) have my staff for that. That should be a relief.