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.

I met my partner 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, my now partner 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 my now partner, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have his 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 my now partner. It turned out that my now spouse 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 my now partner 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.

My spouse 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 my partner. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

My partner 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.

My spouse 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 my spouse 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

This Is Me: Beyond the Labels #Blogtober20

Posted on by Astrid

A few days ago, I discovered Blogtober, a month-long event aimed at bloggers writing a post everyday during the month. There are prompts for each day of the month. They’re based on song titles, but you can do whatever you want. You don’t even have to follow the prompts! The first prompt is “This Is Me”.

So, who am I? When introducing myself, I tend to focus heavily on my labels. I tend to say that I’m blind and autistic and that I have mild cerebral palsy. I tend to say that I live in a care facility. I tend to say that I don’t work, but do day activities at my facility. Then again, are these the things that define me?

I could also be focusing on my passions. I am a blogger. I love to read memoirs and young adult fiction. I love to make soap and other bath and body care products. I am interested in aromatherapy. I am passionate about mental health and disability rights.

These are more “me” than my disabilities, but they’re still labels. Who I am at the core is not a blind or autistic person, or a blogger even.

Still, it is hard to define myself beyond the labels. Here are, however, a few things I think make me me.


  • I am open to new experiences. For example, I love to discover new hobbies. I am also open-minded to differences in people’s identity.

  • I am passionate. When I have an idea in mind, I can truly focus on it for a while. This means I can really be enthusiastic, but it also means I tend to perseverate.

  • I am sensitive, both to emotions and to physical stimuli. This may or may not be a positive characteristic, depending on how much I can handle on a given day.

  • I am intelligent. This is often the first positive quality people mention about me and I tend to hate that. After all, my IQ was often used to show that I should be able to solve my problems in other areas. Now that I am in an environment that doesn’t judge people by their IQ – I live with people with severe to profound intellectual disability -, I tend to appreciate my intelligence somewhat more.

  • I am a go-getter. Some people would disagree, because I have very poor distress tolerance and because I haven’t achieved their goals for me. They see the fact that I’m in a care facility and not working as a sign that I’ve given up. I haven’t. I have just focused on my own true needs and desires.

What are some things that make you uniquely you?

#Blogtober20

Activities I Enjoyed As a Child

Posted on by Astrid

Hi everyone! How are you doing? For today, I have a rather joyful post. I’m going to share stuff I enjoyed doing as a child. I mean, I didn’t have the best of childhoods, but there were definitely things I enjoyed. Here is a list of activities I liked as a child, and some I still do.

1. Listening to cassette tapes. At around age five, my parents got me a subscription to the Dutch audio magazine for blind children. It was on cassette tape at the time. It lasted only an hour and was sent out every three weeks, but I still loved listening to it. I also loved listening to old editions. Back then, you had to return the cassette tapes after listening, but you could also send a guilder with the empty case and a note saying you kept the magazine. I did this almost with every edition and listened to a lot of them repeatedly.

My parents got me a subscription for the magazine for blind preteens for my tenth birthday and I started subscribing to the one for teens at age twelve. I had that one for about ten years I believe.

I also loved listening to audiobooks. I hated reading Braille books, but really loved the cassette taped books.

2. Playing with dolls. I had a favorite doll, Roza (it was really spelled with a Z). I got her for my third birthday from my grandma, who had bought it on a trip to Berlin. Roza had blond hair and light skin color. My sister’s favorite doll was called Marijke and she was dark-skinned with black hair. We often played that the dolls came from Suriname and went back there on vacation.

3. PlayMobil®. I started playing with PlayMobil® at around age three. Back then, I had three favorite figures, whom I called Pekel, Laren and Foet, none of which are actual Dutch names. These figures did normal everyday stuff like eating, going to the toilet, etc.

When I got older, I played more complicated games. At one point, when I was around eleven, I had two Native American figures whom I called Ingassa and Maranna. My sister played with these figures, while I played with a red-haired figure called Pippi. We said that Ingassa and Maranna were originally from Costa Rica and we again played that we were going back there. Okay, I sound real racist right now with all my stereotyped games.

4. Playing outside. When I still lived in Rotterdam, we had a sandpit that my father had built. It was made of wood which hadn’t been varnished I think, as it was often moldy. I loved playing in it.

We also had a set of swings. I loved those! In Apeldoorn, we got a large set of playing equipment from our grandma. It included a rope, a horizontal bar to bend over and also swings. Until I was at least thirteen, I spent a lot of time on the swings. At the day center, we have a set of indoor swings and I love them, even though I get dizzy quickly going on them.

What activities did you enjoy as a child?

#WeekendCoffeeShare (September 27, 2020)

Posted on by Astrid

It’s pretty late in the evening already and I had a few gulps of wine. That isn’t a wise idea, as I normally literally never drink. It was one of my staff’s leaving party and the other staff dared me to drink to it. I only had one gulp of red wine and one gulp of white wine, but I was definitely feeling the effect. Call it placebo, I don’t care.

I’m joining in with #WeekendCoffeeShare. The staff who is retiring took the remaining wine home with her, so we don’t have that now. We do have several types of soft drinks and a type of orange-peach juice. We also, of course, have coffee or tea. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that, thankfully, all clients who had cold symptoms last week, tested negative for coronavirus and are on the mend now. I am still a bit sniffy but other than that feel fine.

If we were having coffee, I would share that now, unfortunately, my husband is sick. For this reason, I couldn’t see him over this week-end again. I hope he’s better by next week, both for his sake and mine.

If we were having coffee, I would tell you that I made an experimental soap yesterday. I made it with real coffee grounds and espresso fragrance oil. I was planning on making a soap for the staff who’s retiring, but didn’t have time to make one for myself to try out first. Here’s hoping the staff will like it.

If we were having coffee, I would then go on and on about my new essential oil diffuser and my new oils to go in it. I had a blend I made myself in it yesterday, which I call lime love. It uses lime, lavender and ylang ylang essential oils.

If we were having coffee, I would also share how happy I am with the weighted blanket I’m allowed to try out for two weeks. Last night, I didn’t sleep well due to once again hyperfocusing on a project – my umpteenth attempt at blogging in Dutch. However, I did feel more rested than usual when I woke up.

Lastly, if we were having coffee, I wouldn’t have coffee at all, as I’m wanting to go to bed soon. I love lying in bed with my essential oil diffuser on with a relaxing blend in it, some soothing music in the background and my weighted blanket over me.

What’s been going on in your life lately?

My Essential Oil Container #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

I’ve been perseverating a lot about essential oils, so when the prompt for Stream of Consciousness Saturday (#SoCS) was “Container”, I immediately thought of my box of essential oils. The box was specifically made for storing 10ml bottles of essential oils. It was built by people with intellectual disability.

I’ve had this one box for many years and stored a large amount of essential oils in it. It can store at most 30 bottles and I had it full until I weeded out some expired oils at the beginning of the week. That is, I didn’t just store essential oils in it, but also fragrance oils. I have those stored in a separate basket now.

Currently, there are eighteen oils in my container. I bought them pretty much randomly, so cannot use all of them in blends, because that would require I had other oils to go with them. However, I enjoy each and every oil.

I have been counting and calculating which oils to buy next too. I don’t have many citrus oils, because I had to throw several out that were years beyond their shelf life. I may buy some basic ones, like lemon and orange, but not sure. I will maybe also buy some spicy ones, as I love the scent of litsea (may chang), but it is usually combined with spices such as cinnamon or clove.

I also created a folder on my laptop with essential oil blends and an index of the box. After all, I cannot read the bottle labels and I cannot label each bottle in Braille (that would take up too much space). So I have them sorted alphabetically, from field mint (which translates to “akkermunt” in Dutch and which I can barely use) and anise to tea tree and ylang ylang.

What are y’all’s favorite essential oils? I’d love to know so that I can decide on which, if any, to buy next.

Lovin’ Lately (September 25, 2020)

Posted on by Astrid

It’s Friday and that means it’s time for the Friday Favorites linky. I don’t join in every week, but today, I have a lot of amazing things I’ve loved lately.

1. My new essential oil diffuser. I had promised myself a new one when my benefits came in on Wednesday. After all, the old one was a bit leaky at times and its buttons had been stuck for a while. Wednesday in the middle of the night, I decided to order it despite my benefits not having shown up in my bank account yet. I got it from Bol.com, a large Dutch online store similar to Amazon. When checking out, Bol.com offered me free same evening delivery because I have a type of subscription (only €9,99/year) with them that allows free delivery. It seems rather decadent to want same day delivery on non-essentials, but so what? It arrived the following evening at around 8:30 and I love it!

2. Lots of essential oils. I ordered those at the end of last week at an online soaping supplies store. However, they take 3-6 working days to process and ship your order, so my oils didn’t arrive till Tuesday. I went through my old essential oils on Wednesday, seeing which had expired. I still have quite a lovely selection though. Currently, a blend of patchouli, bergamot and lavender is diffusing in my diffuser.

I also ordered some other soaping supplies, but haven’t used those yet.

3. Chocolate. On Wednesday, I had been in the care facility for one year. To celebrate, I asked my staff to get some mini candy bars for me and the other clients to enjoy. I particularly loved the crispy one.

4. Books. I haven’t been reading that much lately, but I did download a few new books off Bookshare. Among these are, not surprisingly, several books on essential oils. However, I also saw that the latest Katherine Center novel, What You Wish For was added to Bookshare. I haven’t gotten down to reading any of her books, but I think I’d enjoy them.

5. A weighted blanket. I discussed sensory integration with the physical therapist a while ago and suggested I try a weighted blanket for relaxation. The company that my care facility works with, sends them on a try-out basis for two weeks for just shipping costs. If it helps, the physical therapist is even going to ask my facility to purchase it for me. So far, it’s pretty great.

6. A small table. When we had the COVID scare and were in room-based isolation early in the week, I needed a table to eat on other than my desk. The staff got a small table from an empty room. We’re no longer in isolation, but I’m allowed to use it for as long as no-one else needs it. I love it! I have my diffuser on it. Used to have it on my countertop, but that didn’t work. I may ask my husband to help me look for a similar table at Ikea.

What are some things you’ve been lovin’ lately?

My Medication Musings: Abilify

Posted on by Astrid

It’s been a while since I last did a post on my medications. Today I’m writing about the medication I’ve been on the longest: aripiprazole (Abilify). I’ve been taking this second-generation antipsychotic for over ten years.

When I first got prescribed Abilify in 2010, I had been on no psychotropic medications except for PRN oxazepam for over two years. I was having a lot of meltdowns though and the staff at the psych hospital couldn’t adequately care for me. I was sent to the locked ward for a time-out shortly before starting on Abilify.

When my psychiatrist proposed this medication, he made a pun about the drug’s name by saying it makes things a little easier. I didn’t like that, but agreed to take a low dose of Abilify anyway. I started at 5mg a day.

Within half a year, I had had my dose upped to 15mg a day. I did pretty well on that moderate maintenance dose for several years, until I moved to another hospital. There, the staff/client ratio was lower and besides, staff weren’t as willing to accommodate for my needs. I quickly had to up my dose again to eventually 30mg a day.

I wasn’t so sure I wanted to go beyond 15mg, as most clinical guidelines recommend a higher dose for acute mania or psychosis only. My new psychiatrist disagreed and seemed to have no interest in lowering my dose once I had upped it. For this reason, I’m still on 30mg a day.

When I first came here, I expressed a wish to lower my dosage once I’d settled into the care facility. The intellectual disability physician for my facility as well as my psychiatric nurse practitioner recommended I wait at least six months. I’ve now been in the care facility for a year, but haven’t felt comfortable asking to be tapered yet.

Now I must say I don’t experience any of the more major side effects, such as akathisia (a form of physical restlessness). I however do feel slightly sedated.

I also feel that the medication’s effect has worn off over the years. I recently learned that your neurotransmitter receptors overgrow when you’ve been on psychotropic drugs for a long while. At least, that seems to be the case for the dopamine D2 receptor, the one Abilify mainly acts on. Recommended action is lowering the dosage or trying another medication. I will definitely raise this issue with my nurse practitioner.

As a side note, like I said, I had my dosage upped once I moved to a psych ward with a lower staff/client ratio and less willingness to accommodate my needs. This is not an appropriate reason for medication increases, but I didn’t know what else to do.

Negative

Posted on by Astrid

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

#WeekendCoffeeShare (September 20, 2020)

Posted on by Astrid

It’s Sunday and I want to tell you more about my life right now. For this reason, I’m joining in with #WeekendCoffeeShare. The image above is taken on a bridge over the local channel. I’m not there right now and in fact did not go out for a walk today at all. I did drink coffee. And pure green tea – not the matcha powder type. If you want any, you can grab some. There’s also cold water in the fridge. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that it was my and my husband’s ninth wedding anniversary yesterday. I wasn’t able to visit him though, because I have a cold. At first I wasn’t sure whether just a cold means I need to stay home, but my husband sent me the COVID-19 FAQ from the health authorities that said I had to. Strangely, a staff who has a cold slightly milder than mine, was working this morning anyway.

If we were having coffee, I’d tell you that I did send my husband a card with a photo of me in it. He appreciated it.

If we were having coffee, I’d tell you that I just got interrupted while writing this post by a staff to tell me several other clients show cold symptoms. I already knew this, but it means we’re from now on being cared for in our rooms. We’ll get tested for COVID-19 as soon as possible, maybe today but I don’t think so.

If we were having coffee, I’d share that I am loving learning more about essential oils and soap making. I downloaded three books on the topic of essential oils from Bookshare yesterday. Of course, since I don’t have a microwave or stove in my room, I won’t be able to make soap while we’re still being isolated. However, I do have my essential oil diffuser and oils here, so I can make my own diffuser blends.

If we were having coffee, I would tell you that I requested my staff bring me some coffee cups so that I can make Senseo coffee in my room. I mean, staff do come here to deliver our meals and help us whenever we need it, but they do need to wear protective clothing when entering our rooms. I think that’d be a bit annoying for them if they had to bring me coffee.

What else is new? A lot really, but all seems futile now that we’re in room quarantine. For those who pray or send positive vibes, do get those prayers/healing vibes/etc. coming our way.

What have you been up to lately?

Gratitude List (September 18, 2020) #TToT

Posted on by Astrid

It’s Friday, yay! It’s the Friday there are no day activities, so I spent most of my morning and part of the afternoon in bed. I’m feeling a bit tired and down in the dumps, so I thought I’d do a gratitude list. As always, I’m linking up with Ten Things of Thankful (#TToT).

1. The weather. Early in the week, the temperatures reached over 30 degrees Celsius. I loved being able to wear a skirt for what might be one of the last days this year.

2. Going for walks. I reached my step goal of 10K steps a day three times this week.

3. The scenery. I cannot fully enjoy it, of course, as I’m blind, but I do appreciate it.

Scenery

4. Taking pictures with my phone. I, of course, needed some help taking them and still needed to delete several because my finger was showing. However, I loved the ability to do it. I’m still not planning on following the rule of a picture with every post, as that just won’t work for me.

5. The sensory garden. I spent some time in it on Tuesday afternoon. I loved smelling the rosemary. Sadly, the lavender had already stopped flowering. I also loved listening to the little stream of water.

Sensory Garden

6. Wraps. We made those for lunch on Thursday and I loved them. I had three of them. We had them filled with chicken, lettuce, cucumber and red pesto.

7. Soap making, of course. I loved being inspired to make some soaps again and am planning on making more. One of the staff is retiring next week, so I’ll make one for her.

8. My essential oil diffuser. Okay, its buttons are almost stuck, but not completely, so I can still use it. Last night, when I couldn’t sleep, I diffused a store-bought essential oil blend called Sweet Dreams into it. I am already on the lookout for a new diffuser in case this one stops working altogether. I also have been looking at recipes to make my own blends.

9. Special interests. And people who listen to me perseverating about them. My current special interest is, of course, soap making and aromatherapy. I have been loving telling a new staff, who will be replacing the retiring staff, all about how to make soap, lip balm, essential oil blends and such.

10. My husband, of course. It’s our ninth wedding anniversary tomorrow, so how can I not mention him? I saw him over the week-end and will be seeing him again tomorrow.

What are you grateful for?