Hello Monday (May 8, 2023)

Posted on by Astrid

Hi everyone. My weekend was quite good, if a little hectic. I thought I’d share about it. I am linking up with Hello Monday.

On Saturday, I had a temp worker who was here for the first time as my one-on-one staff for most of the morning shift. Thankfully, I got along with him okay. This did mean I didn’t feel comfortable going on a walk, let alone working with clay or other crafty things. I did play a game of Yahtzee with a fellow resident in the morning. My weighted blanket was also finally put in the washing machine. I was a little worried that putting it in the dryer would damage it, but the staff told me he knew what he was doing. Thankfully, once I got back from Lobith on Sunday, I found out it was still intact.

In the afternoon, I got a new temp worker once again, but thankfully my spouse was here almost as soon as the evening shift started, so I didn’t have to deal with the temp worker long. We drove to my spouse’s and my house in Lobith, picking up groceries and Domino’s pizza along the way. I had the hot and spicy pizza with pepperoni, bell peppers, onions and jalapeños.

Because I hadn’t been walking all day on Saturday, I decided to do some dancing in the evening. Otherwise, I wouldn’t have reached my movement goal on my Apple Watch and I didn’t want to cheat by lowering it yet again (and I certainly didn’t want to break my 250-odd day streak).

On Sunday, we visited my in-laws for a bit. My mother-in-law and I went for a 40-minute walk through the village. In the evening, when I once again had a temp worker, but thankfully a somewhat familiar one, I went for two more 40-minute walks. Then, because I could, I danced some more. I finally doubled my movement goal on my Apple Watch for the first time in half a year.

Yesterday evening, I had a bit of an issue with my sister. I invited her to my birthday at the end of June, thinking that if I invited her now she would have plenty of time to make sure she actually could make it on one of the days my spouse and I are available. She got upset, because her and my youngest niece’s birthdays are first (this Saturday and on the 19th, respectively). She tried to ask me whether we would come over for her birthday too, which on the surface seems reasonable. However, being that she has both this weekend and the weekend after that planned pretty full with other family and, besides, we don’t do last-minute planning for trips that are this long (my sister and her family live over two hours away), I decided against it. According to my sister, the way it “works” in our family is everyone knows when our birthdays are and is welcome to come by, so it wasn’t like she should have invited me. Being the people pleaser that I am, I actually almost let her persuade me to allow her to ask her in-laws, whom I barely know, to pick me up when they would be visiting them on the 18th. Thankfully, my spouse intervened and told me that would be really unwise, since what if I have a meltdown either on the trip or when with my sister’s family? Finally, thankfully, it turned out she wasn’t really expecting us, but was just upset that I’d mentioned my birthday this close to hers. I can see her point.

Yesterday, as a side note, was my partner’s and my fifteenth anniversary of being a couple. I really feel pleased that we decided to “call it a relationship”back on May 7, 2008. We’ve overcome quite a few hurdles in those fifteen years, but I’m so happy that we’re stronger than ever together!

My First Date

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is first dates. Since my now husband, Jeroen, was the only person I ever actually dated, I’m going to share my experiences about meeting him.

As regular readers might know, we met on a message forum. More specifically, he met me there, because I barely knew him by the time he private messaged me. He, on the other hand, had read most of my posts on the forum, as well as my blog.

I wrote on there, for all forum members to see, that I was feeling lonely living on my own in my student apartment in Nijmegen. At the time, he had decided he wanted to expand his circle of acquaintances. Neither of us were really looking for love, so in that sense, maybe it wasn’t actually a date.

Jeroen PM’d me asking to have a cup of coffee or tea somewhere in Nijmegen. I agreed, then backtracked, fearing he was a “creep in his fifties”, as I worded it. You see, I had barely read his introductory post. He invited me to the forum meeting in Utrecht where, according to him, at least fifteen other forum members could vouch for him that he didn’t appear creepy and was nowhere near fifty. He was eighteen at the time and I was twenty-one.

Looking back, I still took an enormous risk, as I never went to that Utrecht meeting. I did tell my support worker where I’d be meeting Jeroen, but, me being an adult, I didn’t have a curfew or anything.

I can’t remember whether I was stressed beforehand. During our meeting up, I certainly was. I can’t remember who paid for my coffee and his tea, probably him. As I’ve mentioned before when discussing this first “date”, I tripped over some steps in the cafe, spilling my coffee. I screamed in frustration.

As for who did the talking and who did the listening, neither of us talked much. Jeroen asked me about my taste in music, to which I replied vaguely that I like world music. I honestly wouldn’t have a clue how to respond now either, as I’m not really that much into music.

This “date”, to be honest, was quite the disaster, but Jeroen had it in his mind that, if he tried to meet me another time, we’d have many more dates. And we did. We got married exactly four years after this date.

The One I Love: My Husband #Blogtober20

Posted on by Astrid

Welcome to day two in #Blogtober20. I realize that when I wrote about myself yesterday, I never mentioned the fact that I’m married. Thankfully, the second prompt in the series is “The One I Love”, so now is my opportunity to talk all about my husband, Jeroen. I usually don’t refer to him by his name, but right now it’d be confusing to refer to him as my boyfriend, now husband or whatever constantly.

I met Jeroen on an Internet forum in 2007. Neither of us were looking for a relationship. I wrote on the forum that I was bored and lonely living on my own in student accommodation in the city of Nijmegen, Netherlands. He went to school in Nijmegen at the time. He was also looking to expand his social circle, so he PM’d me asking if we could drink a cup of coffee or tea in Nijmegen somewhere. We met at the bus stop near the university’s dentistry department, because that was the only bus stop near the uni that my bus would stop by. We went for a coffee or tea at the uni’s cafe. I was so nervous that I tumbled off a step and dropped my coffee.

Thankfully though, Jeroen didn’t mind. Though he had been nervous too and had mixed feelings about our first time meeting, he did want to meet again. I invited him to my student apartment, just because I had no clue where else to meet. That could’ve been really stupid, but thankfully it turned out well.

Six weeks after first meeting Jeroen, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have Jeroen’s phone number, so asked my staff to log onto the forum and send him a message. The staff didn’t include my phone number, because I hadn’t requested it.

Several weeks later, my father called to ask whether he could give my number to Jeroen. It turned out that Jeroen had found my father’s E-mail address by googling the whois info for his website. I am so grateful my father didn’t have privacy protection on, as I do with my websites.

It certainly wasn’t love at first sight (oh, that sounds stupid for a blind person) for me. On the contrary, when Jeroen told me he was in love with me, I let him wait four months before reciprocating it. Similarly, when he proposed to me in June of 2010, I replied: “So do you think that’d be cool then?” He did really want to marry me and we had our wedding date on September 19, 2011, exactly four years after we’d first met.

Jeroen and I don’t live together. Like I said, he fell in love with me while I was hospitalized. This hospitalization lasted 9 1/2 years, after which I was kicked out to live with Jeroen. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

Jeroen is 31-years-old (32 next month). He sometimes jokes about my having married a younger man, as I am 34. I am glad he isn’t significantly younger than me though, as, when I was hospitalized on the locked unit, I wasn’t to leave the ward unless with someone 18 or over. We loved going to the hospital cafeteria to have tea or hot cocoa. We also loved playing cards.

Jeroen and I have the same sense of humor. We love wordplay and have our own phrases and terms for communicating certain things. For example, when we get bored of each other, we say “banana spider”. He is also really inventive with new nicknames for me. I, not so much.

I really love Jeroen and want to be married for the rest of our life. Not living together has its ups and downs. Particularly in these times of corona, we’ve had to be separated more than we’d like to. Thankfully, our love has survived.

#Blogtober20

The Roles I Play

Posted on by Astrid

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?

Choosing Love #SoCS

Posted on by Astrid

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that Jeroen is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love Jeroen more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my husband to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my husband anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.

Dear Diary: 2021

Posted on by Astrid

A ton of ideas are floating through my mind for topics I want to write about. However, I’m tempted to just do another #WDIIA post. I also realize I signed up for the #AtoZChallenge and haven’t even started drafting my posts for it yet. Ugh, that’s me being a blogger. Instead of drafting a post in advance though, I’m participating in Mindlovemisery’s Menagerie’s Sunday Writing Prompt for yesterday, for which the theme is Dear Diary. And no, this isn’t going to be a boring description of today. I hope it will be a diary entry I can write someday in 2021, when like I predicted last year, everything will be okay. Here goes.

Dear diary,

I just took a look at some old blog posts from last year. Today is September 30, 2021. My sister and brother-in-law have their fifth wedding anniversary today. Hubby and I just had our tenth on the 19th. It was wonderful! We celebrated by going out at my not-so-newly favorite restaurant, where both of us ordered unlimited piri-piri chicken. It was delicious! My husband had the following week off, so I decided to stay with him for the week. Since traveling still was discouraged last year, but isn’t this year, we took some time to vacation at a nice resort. I spent most of the time in the swimming pool. Boy, have I missed swimming!

I’ve also missed going out to dinner. Oh and ordering pizza. Though during most of the COVID-19 crisis, Domino’s still delivered pizzas, there was no-one to eat them with, since my husband couldn’t visit.

Oh, I’m so happy my husband didn’t leave me over that whole COVID-19 thing. I mean, it took several months before the no-visitors rule was lifted at my care facility. I was worried all of this time that hubby would want to have a real wife who could be with him. Apparently not. He wants me.

I’m so glad the worry is a lot less than it was last year. I’ve been working on my self-worth in therapy and getting EMDR for my childhood trauma. Thankfully, mental health resumed regular face-to-face sessions in June last year. By now, I feel better than I’ve ever before.

In 2019, I wrote on my blog that, by 2021, everything would be okay. I could not have predicted a pandemic making life much harder first. Thankfully, my husband and I survived and it’s made us and our relationship stronger.

Freewrite on My Transition Into Long-Term Care

Posted on by Astrid

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

Working On Us Prompt: Family Relationships and Boundaries

Posted on by Astrid

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

Love: How I Met My Husband #AtoZChallenge

Posted on by Astrid

Welcome to the #AtoZChallenge day 12. Today I am going to share a positive story, because I am going to write about love. I have known my husband, Jeroen, for 11 1/2 years and love him to pieces. I want to share how we met in today’s post.

In September of 2007, I was living on my own in Nijmegen. I struggled a lot and felt extremely lonely. I at the time frequented a message board, where I posted that I felt alone. Jeroen was on this forum too. He had been wanting to expand his social circle, so he had decided to get to know some fellow forum members better. He read my blog, which I’d kept on WordPress since early 2007. From that, he decided he wanted to meet me. He sent me a PM asking to have a coffee or tea somewhere in Nijmegen. I accepted.

At first, I was unsure whether I’d be safe. What if Jeroen wasn’t the 18-year-old guy he claimed to be? To be honest, I didn’t know much about him from the forum even though he was an active member. He offered to meet me at the forum meetup in Utrecht, but I didn’t have the spoons to travel there, so I agreed to see him at the bus stop closest to university that the bus I knew drove by.

On our first “date”, we were both stressed. I fell off a step and dropped my coffee. When we sat down on a bench, he asked what type of music I liked. I answered “world music”, as I mostly listened to Latin American music.

After our first time meeting, he PM’ d me to tell me he had mixed feelings about it. So did I. But a few weeks later, he again PM’d me to ask whether we could meet again and I invited him to my apartment. That was probably a bit weird, but I knew no other place in Nijmegen.

When we had just planned our fourth “date”, I was admitted to the psychiatric hospital. I didn’t have his phone number, nor did I have Internet access. I gave my support worker my login details for the message board and asked her to contact Jeroen.

A few weeks later, my father called asking whether he could give Jeroen my phone number. I agreed. Jeroen had found my father’s E-mail address through the whois of his website (that he doesn’t do a thing with). I”m so glad he was (and still is) such a tech savvy person and didn’t give up.

It took us six more months from that point on to agree that we would be calling our involvement a romantic relationship. I am so glad I eventually agreed to love him back, as he’d been the first to say he was in love with me. We will be celebrating our 11-year anniversary of being a couple next month. We got married on the day we knew each other exactly four years on September 19, 2011.

A Letter to My Younger Self #Write31Days

Posted on by Astrid

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?