#WeekendCoffeeShare (April 18, 2021)

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?

Color Vision

As regular readers of my blog will know, I am blind. I wasn’t always totally blind though. As a child, up to around age twelve, I could see most colors. I could still see some very bright colors until I was eighteen.

When I asked the ophthalmologist at the university medical center to put me on the waiting list for cataract surgery in 2013, some color vision was all I hoped for. The doctor said that the best possible outcome was that I could have hand motion vision, ie. see someone’s hand move from one meter away. I didn’t really care about seeing anything one meter in front of me. If I’d have to hold a colored paper five centimeters in front of me to see its color, that was fine by me. I just wanted to be able to distinguish colors again. Unfortunately, though the surgery was at least a partial technical success, I never regained color perception.

When asked at the rehabilitation program for the blind what we’d be happiest about to regain if we ever regained our vision, most of my fellow clients mentioned some variation of independence. I, though, said that I’d be able to enjoy the colors of nature again. Unfortunately, though technology has come a long way, it will likely never be able to recreate an experience remotely similar to color vision.

I can still, fortunately, see some colors, but it’s in my mind’s eye. You see, I have projected grapheme-color synesthesia. When I touch the characters on my Braille display, they evoke a visual sensation of a color. Each letter corresponds to its own color, though some of the colors are very similar. That probably reflects the fact that I was never able to see the full variety of shades of colors that sighted people can. For example, the V and J are both a light shade of green. I can tell them apart if I see them both, in that the J is a slightly lighter, mintier shade, but it’s hard to describe.

Words also have an overarching color. In case you’re wondering, the colors of color words don’t always align with their meaning. For example, the word “Green” is more red (after the letter G) than green, even though both E’s are green.

I love my synesthetic color perception. It makes up for a loss of appreciation that no amount of technology can compensate for.

This post was inspired by CalmKate’s Friday Fun Challenge with the theme of “Colors”. I’m not really sure whether this rambling piece fits the idea of the challenge, but oh well.

An F in Phys Ed

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It

Creating a Sensory Room Experience in My Own Bedroom

It’s been a year since the day center closed. For the most part, it was a good thing for me. I, after all, was often overwhelmed in my day activities group. One thing I miss about the day center though, is the sensory or snoezelen® room. Today, I am sharing how I recreated a sensory room experience in my own bedroom. Since I am blind, I skipped the visual aspect mostly, but I’ll add some ideas for it regardless. That way, you can create a sensory environment for yourself.

Sound

In the day center sensory room, we have a really cool speaker system that’s attached to the bed. It isn’t likely that advanced, so with some speakers at the right position, you may be able to recreate it. I don’t own wireless speakers. However, I found that I can recreate similar effects with earbuds or headphones. I would recommend earbuds for better positioning, but since I don’t have wireless ones, I use my wireless headphones anyway.

I mentioned before that I use an app called MyNoise. This app has over 120 soundscapes and you can customize each individual sound to your own hearing. There are nature soundscapes, but also white noise, Buddhist-like and SciFi soundscapes. I prefer the nature ones.

Like I said, I don’t own wireless speakers, though I might want to invest in some at some point. My phone or computer speakers work okay when listening to music though. There are many calming playlists on Spotify and undoubtedly other music apps too. The ones I love most are Harp Music for Sleeping, Peaceful Guitar and Peaceful Piano. There are also a number of nature sound playlists.

I at one point wanted a music pillow. I may still buy one at some point, but I haven’t yet found one that’s big enough to be used as a sleeping pillow and also works with Bluetooth.

Smell

One thing that my bedroom has and the snoezelen® room didn’t, is an aromatherapy diffuser. I have posted many times about my love for it. Mine cost €40, but they start at as cheap as €15. Essential oils can be a bit expensive depending on the quality you choose. I am obsessed with creating my own blends, so I really like to have a large collection of essential oils. However, if all you want is a nice smell, fragrance oils are also great.

Touch

In the day center sensory room, we had a specially designed waterbed. That felt good, but my own bed is also a pretty good substitute. I usually turn up the head side of the bed slightly.

A thing that’s a true blessing for my senses though, is my weighted blanket. These come in different forms. Some are filled with plastic balls. Mine is filled with sachets filled with granules. It’s a rather expensive blanket at over €500. Thankfully though, my care facility paid for it. With the company we used, you can borrow the blanket on a try-out basis for two weeks for just postage. That helped me make sure it was the right one for me. Mine weighs 12kg, which is relatively heavy considering my body weight of 70kg, but I actually love it this way.

I put a flannel duvet cover over my weighted blanket in winter. When it’s really cold or I need some extra softness for sensory reasons, I use a fleece blanket too.

In addition, I have various soft toys. My favorite is an ordinary stuffed bear. However, I also have a 1.60m large stuffed bear that I got from my mother-in-law for my birthday last year. This one was probably quite expensive. Another of my favorite soft toys, is my sensory cat. This stuffed cat can be microwaved and then gives off heat and a lavender scent.

Sight

Like I said, I am blind with the exception of a tiny bit of light perception. I for this reason don’t benefit from visual stimuli. That being said, I do know a bit about making your room visually appealing to the senses.

My essential oil diffuser works as a night light too. It can be set to seven different colors and I believe also two intensity levels.

Of course, you may want to use your sensory room experience for more than just sleeping. I’m pretty sure in my care home’s makeshift sensory room, the staff put up some form of Christmas lights for the visual effect.

In addition, there are many different visual projection systems. My care facility owns the Qwiek.

Conclusion

I really love my makeshift sensory room in my own bedroom. Generally speaking, creating a true sensory room requires a lot of money. I am so glad though that I could buy some equipment myself or ask for it as a gift. That way, I was able to skip the unnecessary for me expensive things and find things I truly would use. I am very glad that my facility paid for the weighted blanket.

loopyloulaura

Places I and My Family Have Lived

Today, I once again looked to a book of journaling prompts for inspiration for a blog post. One of the prompts in the first chapter of Journal Writing Prompts for Child Abuse Survivors is to list all the places you’ve lived. There may not be any need to elaborate on them, but I am going to share my thoughts and feelings that come up. For this post, I’m just going to talk about the houses I lived in with my parents. Otherwise, this post is going to be way too long.

First up is my parental house in Rotterdam. My parents bought the house a year before I was born. To be quite honest, I have very few memories of this house, even though I lived there until I was nine. I do remember my and my sister’s bedroom, which had a bunk bed in it. My sister slept at the top and I slept at the bottom.

I don’t remember most other rooms in the house. I know my parents must have had a bedroom, but I can’t remember its location relative to the kids’ bedroom.

I do remember the garden. It was small, but still big enough to play in. It had swings and a sandpit. I loved to play here with my childhood friend Kim.

I also remember the neighborhood. I played in the “thick street”, a square bit of pavement between two blocks of houses. I also often went to the playground across the road from there. When I had lost some of my vision at around age eight, I felt too scared to cross the road.

Like I said, I lived here until I was nine. Then, my family and I moved to Apeldoorn. We moved to a quiet neighborhood. The house we moved into, had a large kitchen-diner and a living room downstairs. We called the living room the “library” because it housed my mother’s huge book collection. Upstairs where three bedrooms, two large and one very small. One was my parents’ bedroom. The small room was my mother’s office, while the other large bedroom was my father’s.

My sister and I each had a bedroom in the attic. I remember not wanting to have my own bedroom at first, probably because I was used to my sister’s company when going to sleep. I eventually grew to like it though. I had the same bed for all of the years I lived here, one of the original bunk beds. My sister claims I got hers and she got mine after the move.

The other two smaller rooms in the attic were a laundry room and a guest bedroom.

We had a large garden. The first summer we lived here, my paternal grandma gifted us a wooden play set that had swings and climbing equipment. I could be found on the swings many hours each dry day until I was at least fourteen.

During the first few years that I lived in this house, I loved exploring the neighborhood. It had at least four playgrounds within a five-minute walking distance from my home. I would often roam about trying to find new playgrounds farther and farther off. When I lost more of my vision at around age twelve, that mostly stopped. Besides, of course I was too old for playgrounds then. I still went to the nearby shopping center regularly, often getting lost on my way.

I generally really liked the house in Apeldoorn. When my parents were trying to sell it and my husband and I were looking for a home, my parents initially offered it for rent to us. We however had the provision that it’d go off the market for a while. Of course, this wasn’t really reasonable. My parents sold the house in December of 2013. I am glad in a way now that they did, as now I have no need to be reminded of the house and my childhood when I don’t want to be.

Waiting for Sunrise #Write28Days

Welcome to day five in #Write28Days. Today’s prompt is “Sunrise”. It is also this week’s prompt for Five Minute Friday. I’ll try to freewrite for this post, although I won’t set a timer.

At first, the prompt didn’t speak to me. I have rarely in my life ever seen the sunrise, as I don’t usually get up before dawn. Besides, I am almost completely blind, so I am not able to appreciate its visual effects as much as others. To me, sunrise looks pretty much exactly like sunset. I know there’s a difference, but I can’t see it.

Then I saw that some fellow Five Minute Friday writers have used the sunrise prompt as a way to symbolize the coming of something good. According to Genesis, God created the sun to mark the day and the moon to mark the night. Indeed, a new morning is often appreciated as something positive. It symbolizes a new chance to make positive changes to our life or world.

Why, though, should we wait for that new dawn? We shouldn’t wait for Jesus to come back to make everything right. With God’s help, we can make positive changes to our life and world right now, even though it’s 8:30PM on a Friday in February and the sun has long set.

There are so many things I want to change about my life and world. Personally, I want to develop my distress tolerance. I want to lose weight. I want to deepen my faith. Politically, I want to educate myself on areas in which I experience privilege, such as race.

I don’t need to and shouldn’t be procrastinating on these things. I may not be able to accomplish them all at once. However, with God’s help, each and every second of every single day, I get to make a choice between love and judgment, ignorance and education, health and sickness, faith and despair. Right now, I am making a choice to trust God. Thanks to His grace, I trust I can make these other positive choices.

New Normal

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

Gratitude List (January 29, 2021) #TToT

Hi everyone on this rainy Friday. I didn’t write anything yesterday or on Wednesday, because on Wednesday I was feeling uninspired and yesterday I was in bed all day feeling like crap. Today, I want to write again and I’m joining Ten Things of Thankful (#TToT) for a gratitude list.

1. I am grateful for a beautiful sunset on Monday. I’m also grateful for still having the residual sight to actually enjoy it. By the time I got my camera to take a picture, the sun had already set a little more than it had when I first saw it. Therefore, the actual thing was even more beautiful than the picture.

Sunset

2. I am grateful my husband is feeling better. This week-end, I get to go to our house.

3. I am grateful for still no COVID among my family or close relatives. My mother-in-law had to get tested last week, but thankfully, she was negative.

4. I am grateful I’m feeling slightly better today than I was yesterday. I have been horribly constipated for about a week now and yesterday evening, was nauseated from it. That has thankfully gone.

I am hoping to get a new medication for the constipation later today. I currently take Macrogol, which gives me horrible gas and cramping. The staff called my GP this morning and she’s going to send in some different kind of medication. I forgot to ask what she’s prescribed exactly, but I’ll find out.

5. I am grateful for rest. I was able to sleep pretty well last night despite having been in bed all afternoon yesterday and having gone back to sleep at 8PM. Thankfully, I feel rested now.

6. I am grateful for my sensory cat soft toy. It can be heated in the microwave and then gives off heat and a lavender scent. I had it in bed with me last night.

7. I am grateful for my new AFO or foot brace or whatever it’s called. The original one came on Monday, but it was painful to wear in a way that the physical therapist thought wouldn’t go away with practice. Thankfully, I now have another one. It’s still painful to walk on uneven ground wearing it, but that’s supposed to go away when I get used to the thing.

8. I am grateful for delicious Turkish pizza. A staff brought me some today and I ate it with salad and mayonaise. It was awesome!

9. I am grateful for some DIY inspiration. Today, the staff (same one who brought the pizza) helped me create some air-dry clay figures which I will later hang onto something for decorating my room.

10. I am grateful for books and Netflix shows. I was able to read again on Wednesday and really enjoyed it. I also got a Netflix subscription again last week. Though I’m not sure for how long I’ll keep it, I did enjoy watching some shows.

What are you grateful for?

When I Was Fifteen

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.