Accomplishments for the Day (June 6, 2021)

Posted on by Astrid

Hi everyone! I was feeling a little low this morning after a restless sleep. This afternoon, I felt even lower after I misinterpreted a comment from my husband about my (lack of) Bible knowledge as criticism. It thankfully wasn’t meant that way. Right now though, I am feeling quite accomplished. Let me share what things I achieved today.

1. Got showered and brushed my teeth and hair. Personal hygiene is a struggle of late, so I am very proud that I got these things accomplished.

2. Got weighed in. I had gained a little over a pound over the past few weeks, but I’m okay with that. After all, my diet hasn’t been too healthy lately. It could also still be the fact that I literally stuffed myself full of fries yesterday.

3. Made relatively healthy food choices. I mean, I had three meals that weren’t too unhealthy. For lunch, I had a grilled cheese sandwich at a sandwich place, but I don’t think it was very unhealthy. I had mini rolls for breakfast and my care facility’s meal service’s meal for dinner. I did have chips this evening, but I kept to one serving.

4. Broke my daily step record. This is the one thing that helped me move from feeling low to feeling accomplished. My old record was 20.2K steps. Now, I have walked 20.5K steps today. Only 200 more to go and I’ll have reached 100K steps in the past week.

5. Read my Bible. I signed up for the Bible in a Year E-mail service earlier this week. Because I had selected the start-to-finish reading plan, I’m now only at Genesis 21-23. Discussing my progress with my husband got me a bit discouraged. He recommended I, being a Christian, read the New Testament first, then got to recommend that if I read the Old Testament now anyway, I could start with Daniel. So I decided to read Daniel.

To get myself acquainted with the story, I got the Immersion Bible Studies book for Daniel, because I like Immersion. That study though combined Ezekiel with Daniel and I’m not intending on reading Ezekiel anytime soon. So I got a little confused and this further discouraged me.

Then I texted my husband in a bit of frustration. He thankfully replied that he had just meant that Daniel might be a more interesting story than most of the rest of the Old Testament. He wasn’t meaning to question my faith.! That lifted my mood again and encouraged me to study the Bible some more.

What have you accomplished today?

Powerful

Posted on by Astrid

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!

This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

#WeekendCoffeeShare (May 23, 2021)

Posted on by Astrid

Hi everyone on this rainy Pentecost! Today I am joining #WeekendCoffeeShare once again. Let’s have a drink and let’s catch up.

If we were having coffee, I would share that the weather is still quite gloomy here. Like I said above, it’s been raining most of the day. It’s also pretty cold. Man, I can’t wait for summer to start!

If we were having coffee, I would tell you that this week was rather emotionally draining. On Tuesday, I found out that I won’t be able to start my new medication until at least this coming week. My care facility’s physician will be back from vacation on Tuesday and should be asked to look into the topiramate then. With some luck, I will be able to start taking it later that week.

Due to the disappointment about this and due to other triggers, I was intensely dysregulated Tuesday evening. Same yesterday. Thankfully, during the rest of the week, I have been able to stay at least out of crisis.

If we were having coffee, I would share that I’m contemplating seeking a re-assessment and possible therapy for what I think may be dissociation. I mean, I’m still unsure whether I’m making the alters up or not. Of course, on some level, I made them up regardless of whether I’ll be diagnosable with a dissociative disorder or not. What I mean though, is I’m not sure whether they are trauma-based or some result of escapism. I’m not even sure my “trauma” is real. I mean, of course it was real, but maybe it wasn’t as bad as I feel it was, or shouldn’t be affecting me as much.

I E-mailed my nurse practitioner about this on Thursday and am hoping to discuss it at our next appt.

If we were having coffee, I would share that I went to McDonald’s for lunch on Friday. I had a crispy chicken burger and fries. It was delicious!

If we were having coffee, I’d share that I was touched to the core by today’s edition of Hour of Power NL. Bobby Schuller’s sermon was on the Biblically-originating saying “Your days are numbered”. It really got me inspired to try to make a regular habit of Bible study and prayer again. I mean, I’ve so far lost only one day in the YouVersion app, two weeks ago, over the past five months. However, I notice that I’m not taking the Bible as seriously as I should and would like to.

If we were having coffee, lastly I’d share that my husband would’ve come to visit me this weekend, but he has a headache. I hope it’s gone soon. Tomorrow is a holiday too so he can come then if he feels better.

How have you been?

Mother’s Day

Posted on by Astrid

Today is Mother’s Day in the United States as well as here in the Netherlands. I’ve seen lots of ads for it floating by for weeks. It’s probably been this way forever. That being said, I never quite paid much attention to Mother’s Day after getting out of elementary school. Back in the day we did the obligatory Mother’s Day crafts. Since my mother has her birthday in late April, she never quite cared (or we conditioned her not to).

I started caring again, at least a little, when I got out of the psychiatric hospital and started day activities at a center for people with intellectual disability. Most other clients still made crafty things for their mothers. I decided to join in and create something for my mother-in-law.

You see, I have never had the best relationship with my own mother. She no doubt loves me, but the way she expressed it when I was growing up is, well, kind of odd.

That plus my mother’s late April birthday means I never quite honored her for Mother’s Day. My mother-in-law though has her birthday in late November.

My own parents have always been big on independence. I understand, but they took it a bit too far given that I’m multiply-disabled. They pretty much left me to my own resources by the time I left high school at age nineteen.

My mother-in-law, on the other hand, has offered to be my informal representative with my care agency. This means that she’s invited to care plan meetings and would be appointed as my guardian should I ever become incapable of making my own decisions.

One time before I was dating my now husband, I too had to appoint an informal representative for a living facility I was on the waiting list for. I appointed my father, but wasn’t happy about it. I do trust my parents to leave me to my own resources, but I don’t trust them to be there when I actually do need them. What I mean is, I am confident that they won’t approve of restrictive care measures without my consent, but I am pretty sure they will rather advocate for me to be kicked out of care.

With my mother-in-law, I am pretty much on the same page. I am not sure she’s seen my current care plan, but she has talked about it in a way that suggests she knows and understands my need for intensive support. Even my husband doesn’t know some details she appears to be in the know about.

My husband jokingly calls my mother-in-law my adoptive mother. If adults can adopt a mother, that’s quite exactly her. I am glad to have her. And just in case you were wondering, yes, my own mother is happy for my mother-in-law to be my informal representative.

#WeekendCoffeeShare (May 8, 2021)

Posted on by Astrid

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

#WeekendCoffeeShare (May 2, 2021)

Posted on by Astrid

Hi everyone on this first Sunday of May. I still honestly can’t believe it’s May already, but it is. Today I’m joining in with #WeekendCoffeeShare. It’s still early in the afternoon, but I didn’t want to be very late with my submission. I’m having my afternoon coffee in a bit, so if you’d like one too, that’s okay. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d tell you that this week was a mixed bag weather-wise. We’ve had sunshine, clouds, wind and rain. The temperatures are still below normal though.

If we were having coffee, I’d be excited to share that, on Tuesday, I went to a playground in a neighboring village with my one-on-one staff. It was King’s Day, so we had the day off from day activities, but I had a lot of fun anyway. The playground had a trampoline, a seesaw and several swings. My husband wondered why I had my shoes on while jumping on the trampoline, but this was apparently allowed.

Me on the trampoline.

If we were having coffee, I’d also share that, on Thursday, I revived my Instagram account. That is, I had posted exactly one photo some four years ago and had deleted that a few months back. On Thursday, as you can see, I uploaded a photo of a soap I’d made with my one-on-one last week. I am not yet certain I will really be posting to my Instagram more often, as I don’t think my pics are really Instagram-worthy, but well. I had fun making the soap and wanted to show it somewhere.

Speaking of soap making though, I’m planning on making a lip balm real soon. I also found out early this week that I will be able to make shampoo bars after all, since it doesn’t require saponification with lye. Now the stuff that is used to make shampoo, is quite concentrated too, but I think I may give it a try after all.

If we were having coffee, I would tell you that the physical therapist once again urged me to wear my AFO after all. It still hurts and, to be honest, I feel as though she dismisses my pain. Then again, I understand the need for the AFO. Let’s just hope my semi-orthopedic shoes will be here soon. I doubt it though.

If we were having coffee, I’d tell you that the manager came by on Thursday to inform me that the opening for a new staff had finally been filled. The new staff will start orienting at my home tomorrow. At first, she will not be working with me, but eventually she might.

If we were having coffee, lastly I would share that I spent the weekend in Lobith with my husband. We had delicious meatballs for dinner yesterday. We also had rice and cucumber. In the evening, my husband gave me a picky eater test he’d found online to see if I had a high score. I scored eleven points, he scored six. Then again, I probably was a little strict on myself, as I said for example that I wouldn’t eat celery. This morning, it was in a salad we had for breakfast and, while I didn’t love it, I didn’t hate it either. There are only a few foods I definitely will not eat. That being said though, the list of foods I’d rather avoid, is quite long.

How have you been?

#WeekendCoffeeShare (April 18, 2021)

Posted on by Astrid

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

The Most Important Milestone

Posted on by Astrid

This week’s prompt for Reena’s Exploration Challenge is “Milestones”.

I am a big calendar girl. As such, I always remember important dates. As a teen, I used to commemorate an important event in my life at least once a month. For example, September 24, 1999 was the day I realized I hated mainstream secondary school and I remembered it for several years afterwards. Similarly, on November 2, 2001, I was in crisis. Same on November 2, 2007 and I was sure the reason (or part of it) was the day (Friday) and date. I still to this day commemorate the day I landed in the psychiatric hospital, even though it’ll have been fourteen years this year.

I realize now that all of these are negative. Don’t I have positive anniversaries? Sure I do. September 19 is the day my husband and I first met (in 2007) and the day we got married (in 2011). On May 7, 2008, we started officially dating and on June 4, 2010, my husband proposed to me.

Then there is the day I was approved for long-term care funding, also June 4 but in 2019. Finally, the day I moved into the care facility, September 23. I only now realize that there were twenty years minus a day between the important event that defined my teens and the important event that I hope will define at least most of the rest of my life.

Okay, that makes me feel ashamed. After all, shouldn’t the most important milestone of my life be the day I met my husband or the day we got married? It probably should be, but right now, honestly, it isn’t. Sorry, hubby.

#WeekendCoffeeShare (April 4, 2021)

Posted on by Astrid

Hi everyone on this chilly and cloudy Easter Sunday. I am rather late joining in with #WeekendCoffeeShare. The reason is that I’m participating in the #AtoZChallenge too and couldn’t find the time to publish another post until today. I just had my afternoon coffee and am going to have a soft drink in a bit, so if you’d like something to drink, that’d be great. Let’s grab a drink and let’s catch up.

If we were having coffee, I’d share how much fun I’m having with the #AtoZChallenge. It is a great way of connecting with new bloggers and challenging myself to write (almost) everyday. For those who don’t know, the challenge is to write posts using each letter of the alphabet on each day of April except Sundays. This is the reason I have time to write a blog post today. My theme is aromatherapy and natural wellness.

If we were having coffee, I would share that this week was rather eventful in general. On Monday, I was very much triggered. I have been having emotional flashbacks a lot, as well as paranoid thoughts about my former clinician reporting me for care fraud if she finds out I’m in long-term care. My staff try to reassure me that I’m not responsible for my care funding. After all, my staff, the manager and behavior specialist applied for me. I am still unsure though.

Anyway, on Monday, when I was particularly triggered, I did an exercise of hitting a pillow to symbolically kick my former clinician out of my life. It was truly empowering!

If we were having coffee, I would also share that, on Friday, I had a treatment review at the mental health agency. My nurse practitioner tried to tell me that I’m already actually processing my trauma with the steps I’m taking now, such as the exercise on Monday. This validated me. My community psychiatric nurse, however, wasn’t fully sure of her role in my treatment and wondered whether she could visit me less frequently. For now, we have decided against this in order to maintain weekly appointments with mental health, alternatingly with my nurse practitioner and CPN.

If we were having coffee, I’d tell you that I finally managed to go to Lobith over the weekend. My cold is still not fully gone, but it’s gone enough that I could see my husband. We had delicious Airfryer fries, turkey and peas for dinner yesterday, as well as pudding for dessert. This morning, we had breakfast in front of the television while watching Hour of Power. It was great!

How has your week been? And how’s your Easter weekend?

#WeekendCoffeeShare (March 27, 2021)

Posted on by Astrid

Welcome to another #WeekendCoffeeShare post. I just had my afternoon coffee about an hour ago and am going to have a soft drink in a bit. Of course, I can still make you a Senseo if you want. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that I’m just about as well as it gets with respect to my cold. I am still a tiny bit sniffy, but I don’t think it gets any better anytime soon. I didn’t go to Lobith this weekend, even though my husband had promised me pizza at our house if I did. After all, yesterday I still wasn’t convinced I was well enough. Instead, my husband is coming over tomorrow.

If we were having coffee, I would say that this past week has been great in the walking department. Like I said yesterday, I’ve been quite active. Today was an exception, as it was raining on and off all day so far. I hope to still get some steps in this evening.

If we were having coffee, I would talk some about the political saga that unfolded after last week’s general election. The current prime minister, Mark Rutte, won the election again, probably because people are used to him doing the corona-related press conferences. Before the election, he’d hinted at some restrictions being lifted for Easter. Of course, that was just a political game to win voters, as in the last press conference, only the curfew got moved from 9PM till 10PM.

Speaking of the lockdown, my husband predicts from what he’s read that most of the restrictions will remain until mid-June. I really hope he’s wrong, but at least we can still see each other (provided neither of us is under the weather).

If we were having coffee, I’d tell you I’ve been loving reading other blogs as well as writing my own blog posts. I’m not yet preparing for the #AtoZChallenge. Maybe I should, as it’s in less than a week.

I’ve also been in contact with WP support again. The reason is the news that the classic editor might be disappearing after all. I’m not sure WP support itself knows what it’s doing, as I get mixed messages. I’m trying to let it go for now though, as so far at least I can still blog.

If we were having coffee, lastly I’d share that we might get new staff here in my care home soon. I think I mentioned last week that a male staff was having a look around our home last week Saturday to see if he wanted to work here. Turns out he does. He’s been orienting here a few more times. He used to work in a home for people with intellectual disability who also have complex care needs due to behavior. I got the impression he didn’t like that anymore, so I feared I’d scare him away from wanting to work here. Turns out he’s going to work in both homes.

Then on Thursday, another prospective staff, also male, toured my care home. The manager informed me in advance that he was coming, which I liked. I’ll be curious to know if he decides to work here.

What’s been going on in your life?