#WeekendCoffeeShare (March 8, 2020)

Posted on by Astrid

Okay, so the 10-day writing challenge is going nowhere. I actually missed yesterday’s prompt reminder and cannot think of anything to write on today’s prompt. Then again, the challenge is to write and that’s what I do. At least, I try. Today, I’m joining in with #WeekendCoffeeShare. I just had a nice cup of coffee and a slice of cake. There’s some left over, so come on in and have yourself some.

If we were having coffee, I would tell you that this week was a mostly good one. On Tuesday, I reached the recommended daily step goal, something I hardly ever do. I walked to our neighborhood supermarket for some groceries for the day activities group and bought some for myself too.

If we were having coffee, I would share that I also got weighed in on Tuesday. Though I had a tiny gain of 100 grams, I am very satisfied. After all, I’ve not been minding my diet much at all lately.

If we were having coffee, I would share about my renewed interest in religion and spirituality. As those who read my blog regularly may know, I don’t really practise any organized religion, but I do believe in God. I was discussing my renewed interest in particularly progressive Christianity with one of my staff on Wednesday or Thursday. She actually invited me to her church. I read one of that church’s pastor’s sermons and it touched me.

If we were having coffee, I would tell you that last Friday, I had a meeting with my support coordinator and the behavior specialist from the care facility and my community psychiatric nurse (CPN) from mental health. It was a good meeting. My CPN is going to look into getting me in touch with the team’s psychologist for trauma treatment. We are also working on my fear of rejection or abandonment. For this purpose, we will incorporate cognitive behavior therapy into our regular sessions.

My husband did warn me not to work on too many things at a time. I agree with him that wanting to progress too quickly is a pitfall for me.

If we were having coffee, I would tell you that my husband came by for a visit yesterday. He didn’t make it here till past 4PM because he had a problem with his car. Thankfully, he was able to fix the car and make it to Raalte anyway. We drove to a nearby forest intending to go for a walk, but there were no roads and I can’t walk through the bushes. Then we drove to McDonald’s, but it was overcrowded, so we ate at the Subway restaurant next door, where we were literally the only people.

If we were having coffee, lastly I would tell you that one of our staff is going to buy us clients Chinese food this evening. The reason is that she graduated from social care school recently. I think I’ll love it.

What have you been up to lately?

Three Wishes

Posted on by Astrid

I’m trying to participate in 7 Days 7 Posts organized by Jessica from Daysixtyfive. That is, I won’t promise I’ll complete the challenge, as I’m having a nasty cold. Yes, again. I hope I don’t end up with a fever this time. That being said, if it doesn’t get worse than it is now, I’ll probably be able to do fine.

Today’s topic is about wishes. You have just been granted three wishes. What are they?

I initially thought that we’re supposed to have big, world-changing wishes like peace everywhere. Then I saw Jessica’s post and her first two wishes are just for herself and her family. Maybe we all are self-centered like this, so I don’t need to feel shameful about wishing stuff for just myself. Here goes.

1. Physical and mental wellbeing. I purposefully wish for wellbeing, not health, as the genie might interpret health to mean I want to get cured of my disabilities. I don’t. I want to remain blind and autistic and having mild cerebral palsy. I even don’t want to be cured of my dissociative disorder, in that I want to remain multiple. What I do want is to be is stable mentally, less anxious. I also want my chronic physical ailments to go away. And while we’re here, I wish this nasty cold away and not to return.

2. To be close to my husband. I would wish for a suited care facility in my husband’s area, so that I could visit him more often. A suited care facility would be much like the one I’m in now, with a day center on grounds, lots of sensory equipment, the staffing level for me to be able to enjoy regular leisure activities, etc.

3. Unlimited ParaTransit access. This was the first that came to mind after a care facility close by my husband. Bigger things like wellbeing hadn’t even come to mind yet. I could wish for an endless stream of money, so that I can hire my own taxi drivers, but I don’t think I’d feel any better then. However, the ability to travel wherever I want without having to worry about public transportation, is very high on my list of desires. Interestingly, for the cost it took to make all trains and buses wheelchair-accessible, the government could have made this a reality for all majorly disabled people.

What would you wish for if you were granted three wishes?

Gratitude List (January 17, 2020) #TToT

Posted on by Astrid

It’s been forever since I last wrote a gratitude list. This past week has been truly mixed, but I still feel there’s enough I can be thankful for. I’m joining in with #TToT again.

1. Domino’s Pizza. Last week, I went home to my husband for the week-end. When we were in the car, my husband asked me what I wanted to eat for dinner. I said “Pizza” and my husband in turn asked me whether there’s a Domino’s in Zevenaar, the city closest to our home in Lobith. I said there is. However, we’d been taking an alternate route to Lobith, so my husband said we wouldn’t drive through Zevenaar, so did I mind getting pizza elsewhere? Then he started teasing me, saying stuff like “You’re still a bit sick right?” and wouldn’t it be better if we had macaroni with lots of veggies. Eventually though, he did drive to Zevenaar and we had Domino’s pizza. I loved my chicken kebab pizza!

2. The flu being gone. I feel pretty much as well as possible now.

3. Meeting the neighbors. On Sunday, our next door neighbors organized a New Year’s gathering for the people in our street and the surrounding neighborhood. My husband and I are new, so as a kind gesture to me, they had each person in attendance introduce themselves and also describe the appearance of the person next to them. I liked it. The neighbors seem nice. I at first wasn’t too sure how much to disclose about my situation, but eventually did manage to explain some without launching into some type of self-centered and depressing monologue.

4. The soap making plans. I told you about it already on Monday. I’m hoping my husband will be able to bring my supplies tomorrow. He did ask me to think of another activity we can do together in Lobith, since I asked him to bring all my supplies. I after all didn’t feel it’d be a good idea to let him sort through my stuff. Now that I think of it, several ideas come to mind.

5. Ylang Ylang essential oil. I had this in my diffuser on Monday night when I was too hyper to sleep. It’s a lovely scent.

6. Over 8,000 steps on Tuesday. I walked three times. The other days have also been relatively good in the activity department.

7. The peanut butter-chocolate smoothie bowl we made on Wednesday.

8. Chatting to some fellow clients. Like I’ve said before, most people in my home are non-speaking and severely intellectually disabled, but there are some clients in other homes and at day activities who can speak and with whom I can have a normal by non-disabled standards conversation. I had some nice interactions this past week.

9. Lorazepam. Like I said yesterday, I was in a bit of a crisis. Thankfully, the PRN lorazepam I took worked.

10. Getting my Braille display fixed. Some dots had been stuck up for a few weeks. I thought the thing just needed cleaning, so I was hesitant to call the company to get a tech guy to come over. Turned out two cells were broken. I’m so happy the thing is fixed now. I did okay reading with these few dots stuck up, but still, it was a bit annoying.

What have you been thankful for lately?

#WeekendCoffeeShare (January 4, 2020)

Posted on by Astrid

Even though I don’t join in nearly every week, I really missed the #WeekendCoffeeShare crowd over the holidays. I’m so glad the linky is back, so I’m joining in today. Grab a cup of your favorite hot or even cold beverage and let’s catch up.

If we were having coffee, I’d say that I prefer water or green tea today, as I’m sick with a nasty cold or mild case of the flu. I can still drink coffee, but it doesn’t taste as good as does water or green tea.

My father-in-law was sick with the flu over the Christmas break. He ended up needing to go into hospital on the 27th for dehydration. Thankfully, he’s back home and slowly recovering. Then over New Year’s, my husband got sick. I seem to have caught it from either of them, but my mother-in-law says it’s a “men’s flu”, in that women don’t get it nearly as bad as men do. I’m hoping she’s right, although of course I hope my husband and father-in-law make a speedy recovery too.

If we were having coffee, I’d share that despite the flu going round my family, we had a good New Year’s. My husband and I went to his parents. One of my sisters-in-law joined us after dinner. I spent the evening mostly reading, while still sitting in the same room as everyone else, so that occasionally I could socialize.

If we were having coffee, I’d say that my 2020 is off to a pretty good start. I came back to the care facility early Wednesday afternoon, because my husband needed to drive me back. I relaxed some over Wednesday, Thursday and Friday, although on Thursday and Friday I did have day activities.

If we were having coffee, I’d share that I’m feeling productive in regards to finding a solution for getting to my husband by public transportation. I had a bit of a crying fit last night because I thought we wouldn’t find a solution and I would struggle to see my husband regularly. My support coordinator E-mailed the behavior specialist though to help us think out a solution.

If we were having coffee, I’d want to share all about the books I’m looking forward to reading. I didn’t read at all today, but over the holiday break, have truly been enjoying reading. Of course, my virtual shelves are still stacked much fuller than my slow reading pace can follow, but so what? I’m a collector at heart, after all.

How have you been this past week and over the holidays?

My Hopes for 2020

Posted on by Astrid

Hi everyone and a happy new year to you all! I’m wishing all my readers the best for 2020. May this year be filled with health and happiness.

Like last year, I don’t really do new year’s resolutions. That is, I’m calling them “hopes” as to have them give me less pressure. This may be a stupid mind trick, so that if I fail at all of them at the end of the year I can just say I wasn’t really meaning to stick to them. Well, anyway, here goes.

1. I hope to find a way to keep my marriage as strong as it’s now whilst I’m living in the care facility. This mainly means I need to find a way to keep seeing my husband despite the fact that I won’t have the ParaTransit to travel one way even once every other week. I really need to find a way to learn to travel by public transportation. The thought of which overwhelms me. Then again, the consequences of not making this work, are far, far worse. I have very conflicting feelings about this whole situation, which I won’t be sharing here.

2. I hope to settle in at the care facility, both the home and the day center, and find a routine that keeps me happy.

3. I hope to keep going for a healthier lifestyle. I first hope to be more mindful of my food choices. I mean, I did okay’ish over the holidays, eating far less than I would have had I not had it in mind that I ultimately need to lose all the pounds I put on. However, I still ate more than I should have.

I hope to stick to my habit of drinking two liters of fluid each day. I have occasionally lost track when at my husband’s, but did welll over the past month otherwise.

I really want to get into an exercise routine. I have a gym in mind that I may want to join in February (because everyone else joins the gym in January).

4. I hope to stick to a regular writing and blogging schedule. I won’t push myself to blog everyday or the like. I mean, I could be joining in with #JusJoJan again and I know the rules aren’t strict so this post counts too, but I think I’d rather jump in when a prompt speaks to me. I aim for a minimum of two posts a week, unless illness or technical problems get in the way.

Dreaming bigger, I hope to write another essay that could be published in an anthology in 2020. I mean, I’m still excited about the one piece I had published in 2015, but there must be more in store for me.

5. I hope to read more. The year is off to a good start, as I finished a book (okay, one I’d started reading in 2019) today. I really want toventure out into the book blogosphere, even though I have zero intention of becoming a real book blogger.

6. I hope I can get into a better self-care routine. This is really an excuse for me to explore more of mindfulness, essential oils, relaxation, etc. I often think that I need to be productive all day. Then recently I listened to a Podcast in which the presenters explained the importance of daydreaming. They linked a lack of it to dementia, which has me scared like crap, because whenever I’m not doing anything in particular, I tend to fall asleep. They didn’t say whether you can train yourself to daydream or whether this helps, but it can’t be bad.

What do you hope to achieve in 2020?

The Third Day of Christmas

Posted on by Astrid

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

My now spouse had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.

A Phone Conversation with My Mother

Posted on by Astrid

Last Monday, my mother called me. She rarely if ever used to call me when I still lived with my husband, but now she’s been the first to attempt contact a few times already. I don’t know whether I need to feel bad about not contacting her first, as conversations usually get uncomfortable for both of us.

Like, on Monday, I had just been in an angry outburst when she called. I couldn’t avoid telling her, as I needed a few minutes to regroup. That caused the conversation to center on my (perceivped by either of us) problems and my mother’s attempt to solve them. She was offering me all kinds of advice. If I just stop panicking at frustrating situations or learn to cope with unexpected change, I’ll be able to live with my husband again. I never even said I want to leave the care facility. Of course though, I’m supposed to have this as my ultimate goal anyway. Who, after all, would choose to live in care if they didn’t absolutely need to?

I was terribly triggered by my mother’s unwanted advice. When processing this conversation with my husband yesterday though, I was reminded of her perspective.

You know, I was born prematurely. My mother already feels guilty about that to some extent, as if she was the one kicking me out of her womb. Well, obviously she wasn’t.

Then in our discussion, I disclosed to my husband that I was most likely exposed to valproic acid, an anticonvulsant, in utero. My mother isn’t certain of it, as she took different anticonvulsants for her epilepsy over the years. However, all valproates and most other anticonvulsants have some risk of affecting the fetus when taken by pregnant women. The realization that this might’ve contributed to my developmental disabilities, didn’t happen right away even though in the 1980s, valproates carried warning labels already. It probably came when I was last assessed for autism in 2017 and my mother was asked whether she took any substances or medications during pregnancy. At around the same time or shortly before, there was an article in the newspaper my parents read about large numbers of French women being given valproic acid during pregnancy as late as 2014. This lead to over 4000 children having serious birth defects and even more having developmental disorders. Up to 40% of children exposed to valproates in utero are autistic.

My husband expressed that this may be a factor in my mother’s trying to deny the significance of my autism. After all, if she did something to contribute to me being disabled, she’d have to deal with immense guilt if admitting its full significance. Then it is more understandable that she’s in some denial. It may also explain, I now realize, why she’s trying to “fix” me. I told her she doesn’t need to, but she remains my Mom.

For clarity’s sake, a pregnant woman getting a seizure may be harmful to both mother and child and my mother said this risk was fairly high in her case if she didn’t take meds. I don’t know, as my mother has been seizure-free for 30+ years and off meds for as long as I can remember. However, I mean this to undo the blame. The doctors did what they thought was best, at least that’s what I assume. My mother and I have some questions here too, as my mother also took part in a trial of aspirin to prevent premature birth, which obviously didn’t work. My mother at least did what she thought was best. She never intended to have me early or cause me fetal anticonvulsant syndrome. More importantly though, there’s no need to fix me. I’m content the way things are right now.

Starting My Weight Loss Journey Again (And This Time for Real)

Posted on by Astrid

In the first week of my being in the care facility, I got weighed in. I hadn’t been weighed since sometime in like February. Not surprisingly, I had gained about 2-3kg in these nine months. I didn’t immediately take action though, as I felt I’d had to get used to being in the facility first and see how my weight would progress. Two weeks ago, I got weighed in and had gained about 500 grams again. This isn’t huge and could be due to the time of day I was being weighed in, but I decided it was time for action anyway. I’ve been in the facility for two months now and need to make sure I don’t gain any weight and ultimately lose some.

As regular readers of this blog know, I’m short-statured at only 1.53m. The upper border of healthy weight, as such, is 58.5kg. The border between overweight and obesity is 70.2kg. I weighed 74.9kg two weeks ago. This means I’ll have to lose at least 5kg. I have no intention of getting to a healthy weight, but I really want to cross the border back from obese to overweight. I also know I can do this, as I did this about 18 months ago too. Now though, once I reach overweight status, I have no intention of crossing the border back to obese.

I discussed my eating habits with my husband. He said that, if I skip just the cookie at morning coffee break and don’t change anything else, I’ll have lost those 5kg in a year or two. I want to go faster though. For this reason, I’ve also changed from chocolate spread to peanut butter on my breakfast bread. I know, peanut butter still isn’t low-calorie, but it’s a lot healthier than chocolate spread. At lunchtime, I still got two slices of bread which were heavily topped with butter and sweet toppings, one with peanut butter and the other usually with chocolate spread or chocolate flakes. There’s a mealtime assistant who prepares our lunch and I didn’t want to have a huge list of demands of her, given that I already have quite a few likes and dislikes on my list. Like, I can’t stand ham or cheese (unless toasted). I basically only eat what are called sweet toppings and don’t even like all of those. As such, I initially didn’t want to say that I don’t want butter and don’t want my bread too heavily topped. After discussing it with the staff, we agreed to put this on my list of lunchtime menu requests anyway.

My husband advised me for the millionth time to drink more water. At first, I was like, how do I remember to drink enough water? He told me to put reminders in my iPhone. At first, I thought that would be weird or annoying and indeed it’s a hassle to put reminders in my phone via the default reminders app. I however remembered a friend recommending an app that reminds you to drink water and where you can log your water intake. I searched for it. The first one I found cost like €8,99/week and hardly had any free features. I mean seriously?! Who would pay almost €40 a month for an app to remind you to drink water? I doubted my friend meant this app. Turned out there’s another app by a similar name that’s free and €9,99 once for paid features. I got that one and love it! I had some trouble setting it up at first, but now it reminds me each hour between 9AM and 9PM to drink water. Its sound is really catchy. I reached my recommended water intake goal for the past three or four days and almost reached it for the entire week that I’ve been using the app.

I finally made my Fitbit activity tracker work again this past week too. It had been lying around ever since I came here because its battery was empty and I couldn’t find the charger. Then when I finally found it, the app had somehow locked me out. I got in again after an app update. I notice that, though overall I manage fewer daily steps than before I moved here, my active hours are better. This means I get over 250 steps most hours during the day. Today, I didn’t do that well in this department, but I did manage nearly 8000 steps throughout the day.

I was pretty conscious of my eating habits all through the week, making sure I eat my veggies if there’s even the slightest chance I may be able to like them. Before this, I’d not even try a lot of them. I made sure to eat enough fruit. Not that I had much trouble with that before, but fruit usually meant bananas. These are relatively high in calories and very sugary. Thankfully, we had grapes, kiwifruit and clementines too, as well as of course apples and sometimes pears.

Over the week-end, I stayed at the facility. When discussing my weight loss plans with my husband, I mentioned that we get chips on week-ends. However, this week-end, we also got pancakes for lunch and a lot of other treats. I didn’t really like the result this would have on my weight, but also found it hard to resist them.

My staff wasn’t particularly motivating either. Some literally told me to wait for January to start my healthier lifestyle routine, as I’d not make it in December anyway. I mean, yes, we celebrate St. Nicholas with a fries and snacks stand on Thursday and get a lot of extra treats this holiday season. Does that mean I don’t need to eat in moderation? Someone asked an overeaters’ support group a few weeks back and was encouraged to follow through now in spite of the holidays. Now I don’t really like the abstinence-focused mindset of Overeaters Anonymous and the like, but I have always felt that you can always start on a healthier lifestyle journey right now.

Yesterday, I decided to get weighed in. I wanted to know how bad the result really was and how much I’d have to lose once I’d start my journey for real. Well, guess what? I weighed 73.8kg. This truly motivates me.

On Thursday, I fully intend to not stuff myself full of fries and snacks even though I can. Tomorrow, my support coordinator has an evening shift and I’ll be asking her to ask her colleagues for help on my weight loss journey. I realized this past week-end that some make me really uncomfortable with how often they offer me food. I mean, my husband was annoyed at my former support worker for allowing me (not encouraging me!) to buy binge food when she took me to the store on Thursdays. I didn’t realize and probably didn’t want to admit that, in some respects, my current staff are worse. I mean, I haven’t had a binge since buying liquorice with my mother-in-law three weeks ago and the staff definitely discouraged that, but weight gain isn’t about an occasional binge. It’s about what you eat everyday.

How Will I Be Remembered?

Posted on by Astrid

Last week, my husband’s grandma died. The burial was on Thursday. It was okay. It however did get me thinking about how I will be rememberd and how I wish I would be remembered when I pass.

If my father’s still alive when I die, he may want to speak at my funeral. Not sure though, as he hardly speaks to me now. Then again, I guess speaking about someone is different from speaking to them. He may recall our positive experiences playing and learning together in my childhood. I will definitely remember those if I am to speak at his funeral.

He would probably have the decency not to go into my disappointing him with my adult life choices. I mean, I know I majorly disappoint him by being in long-term care, but he doesn’t voice it even now that I’m still alive. He isn’t one to talk negatively about the deceased though, I’d think. I can’t remember whether he spoke at my paternal grandpa’s funeral though and he didn’t at my grandma’s.

My mother would most likely be too self-conscious and too emotional to speak. I mean, she cried when I got married even without having to speak during the ceremony and she didn’t hold it together when speaking at my sister’s wedding. As for funerals, she spoke at my maternal grandfather’s funeral but then came running towards me for comfort. I was eight-years-old.

My sister may want to speak, if for no other reason then to fill a void. She did at my wedding (which was lovely, mind you). She spoke at my grandma’s funeral and it was amazing. I loved her sense of humor.

Ever since hearing the song, I’ve said I wanted I’m a Survivor by Reba McEntire playing at my funeral. I do. Even though it wasn’t written about an actual preemie and most of the facts about this hypothetical woman’s life don’t apply to me, the sentiment does. At least, that’s what I hope. I guess people could take its meaning two ways: either I’m the survivor who’s now an inspiration or the former preemie who wasn’t given a chance but somehow lived anyway. There’s a difference. I’m not sure how to convey it though. What I mean is, the focus can be on the negative of my not been given a chance or on the positive of my having given meaning to my life.

My husband wouldn’t want to dig up the past, I guess. He didn’t like this with his grandma’s funeral either, but then again neither did the deceased. She was a very upbeat type of person who didn’t like talking about negative aspects of the past. I guess I wouldn’t be as offended by people speaking a lot about the past when remembering me. Then again, I’d love it if my husband remembered the positives of what will hopefully still be a long life together.

Dream #SoCS

Posted on by Astrid

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.