How I Cope With Loneliness

Today in her Sunday Poser, Sadje asks us about loneliness. She describes the experience as the feeling she gets when her family or friends can’t celebrate something important (such as the seasonal holidays) with her. This is one aspect of loneliness indeed. I feel lonely, left out even, knowing that my sister will be celebrating St. Nicholas with my parents next week and I haven’t been invited. Okay, she has a child for whom this holiday is more meaningful than it should be for me as an adult. Still, I am reminded of the last year we celebrated St. Nicholas with my family, or rather, the first year we didn’t. That was because of me: I had been admitted to the mental hospital shortly before and my parents didn’t want the hassle of having to watch me while I was on leave, so at first they suggested they celebrate the occasion without me. That year, my sister refused and the celebration didn’t go forward at all. Now that my sister has a child, there’s no way she’s going to care about whether I’ll be included or not. In fact, I’m pretty sure she’d rather have me excluded.

Loneliness, however, can take other forms too. Like I mentioned last month, loneliness comes from within a lot of the time. That’s why you can feel lonely when you’re surrounded by people. I often felt this way in the high school cafeteria.

I find that what helps me cope with loneliness is to surround myself with positive influences, both in the form of people and activities. I mean, I could dwell on my family’s rejection of me, but I do have a loving husband and loving in-laws. I also have caring staff and nice fellow clients, some of whom I consider friends.

It also helps me to engage in fulfilling hobbies, such as writing, reading and crafts. Through my blog and Facebook groups, I feel a genuine sense of connection to the outside world. Reading helps me escape my problems, including my sense of isolation. Crafts distract me and help me feel that I can be productive in a way. All of these help me overcome my sense of loneliness.

How do you deal with loneliness?

#WeekendCoffeeShare (November 28, 2021)

Hi everyone on this Sunday afternoon. It’s a little less rainy today than it was yesterday, but it’s still cold outside. Today, I’m joining #WeekendCoffeeShare again. As I type this, I am right between my lunch and my afternoon coffee. I can probably offer you a coffee before I finish this post, ha. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was better than the previous one. Like I said yesterday, my appointment with my nurse practitioner went pretty well and we were able to get to some agreements that will hopefully lead to better treatment for me. For example, I’d struggled to convey in an E-mail how I was struggling two weeks prior and he had asked me to wait for our appt to discuss the matter. That hadn’t sat well with me, so now we agreed that next time he’ll try to call me to further assess the situation.

We also agreed that he would try not to stop me or change the subject if I’m struggling or getting emotional while trying to communicate something. I gave as an example one time when I felt unable to speak and he, possibly not wanting to push me, said: “We don’t have to discuss anything if you don’t want to.” Overall, I feel slightly optimistic about my treatment going forward and I consider that a major win given the desperate state I was in last week.

If we were having coffee, I’d also share that I got some insight into the near-hallucinatory, dysregulated states I occasionally go into at night. My nurse practitioner thinks they might be related to the phase between being fully awake and being asleep. Unfortunately, there’s little to nothing to be done about them, but it feels comforting to know I’m not really “losing my mind”. It also seems, from this idea, unlikely that I’m going to experience these states during the day and really “going crazy”.

If we were having coffee, I’d tell you that, unfortunately, I did experience nightmares last night. It’s probably to do with the flashbacks and memories I experienced yesterday. I am so grateful though that the nightmares aren’t affecting me too much now that I’m awake.

If we were having coffee, I’d tell you that, thankfully, I’ve also been a little more active lately than I was before. Like I mentioned yesterday, I made a polymer clay unicorn on Thursday. My husband wants to have it. I’ve also been reading more lately. I won’t at all reach my reading goal for the year or even come close to how many books I read last year, but at least I finished another book.

If we were having coffee, lastly I’d ramble a bit about how scared I am because of the rapid rise in COVID cases here in the Netherlands. Today, we’re entering an evening lockdown. Stay-at-home orders have also been extended to recommending people work from home unless it’s not possible, like during the first lockdown in March of last year. I’m scared this will mean the day center closes again. More so though, I’m scared of contracting the virus or even a cold and needing to quarantine in my room. Let’s hope I won’t.

How have you been?

Gratitude List (November 27, 2021) #TToT

Hi everyone on this rainy Saturday! I hope all my U.S.-based readers had a great Thanksgiving. Here, it isn’t a thing. However, I like to show thankfulness everyday. For this reason, I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I reached my goal of 10K steps a day once during the past seven days. Okay, it was on Sunday and I only got (barely) more than 5K steps one other day this past week (Monday). The rest of the week, I’ve been rather sedentary. However, I’m still grateful I can apparently still walk 10K steps in a day.

2. Speaking of which, I am also grateful I managed 15 minutes on the elliptical today. It didn’t earn me much in the way of steps, but at least my muscles haven’t totally atrophied so far.

3. I am grateful I had a good talk with the current behavior specialist for my care home on Tuesday. It was my second time meeting her. She helped me clarify some of the things I wanted to talk about with my nurse practitioner too.

4. I am also grateful my appt with my nurse practitioner went pretty well as a result too. I had originally considered quitting treatment with him, but decided against this after the talk with the behavior specialist. Overall, my appt with my nurse practitioner was relatively constructive. We decided on some things to make our sessions more productive. For instance, next time I E-mail him about not being well, he’ll try to call me back so we can assess the seriousness of the situation and what can/needs to be done rather than him telling me to wait for our next appt.

5. I am grateful I am sleeping slightly better lately than I used to. I am still not usually getting the nine hours of sleep a night I need to function optimally, but I’m getting close.

6. I am grateful I have been able to pick up the polymer clay craft again after a bit of a break when I’d finished the owl. I created a unicorn yesterday and it looks pretty cool.

7. I am grateful for French fries yesterday in celebration of St. Nicholas. The holiday isn’t till December 5th, but we celebrated it early at my care home.

8. I am grateful I got nice presents. Well, my husband will actually get the bill, as like I explained before, the care facility doesn’t pay for St. Nicholas presents. I had E-mailed my staff a wishlist too. As it turned out, I didn’t get the specific things I’d had on my wishlist, but I got similar things. I got a number of cookie cutters to use with my polymer clay and a little box of fruit candies.

9. I am grateful my assigned home staff, who was my one-on-one this evening, helped me through some tough flashbacks. I did ultimately decide to take a PRN quetiapine, but I think I really benefited from my staff’s help too.

10. I am grateful my loved ones so far aren’t directly affected by COVID, in the sense that I don’t have any direct family members or friends who’ve contracted the virus.

What are you grateful for?

Poem: Invisible Pain

You can’t see it
The pain
Inside of me
So you assume
It isn’t there

You can’t hear them
The screams
Inside my head
So you assume
They aren’t there

You can’t feel it
The suffering
Which I endure
So you assume
That I’m just fine

I wish I could show you
The agony
I go through
So you’d know
What it’s truly like

The monster
Keeps me hidden
Silent
Untouchable
Trapped
Inside this world of darkness

If only
You could reach in
See or hear or feel
The pain
Then maybe
I wouldn’t feel so isolated
So invisible


This poem was written for Friday Writings, for which the optional prompt this week is to write about pain. I am also joining dVerse’s Open Link Night.

Life Skills I Struggle With As a Multiply-Disabled Person

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

#WeekendCoffeeShare (November 21, 2021)

Hi everyone. Today is a rather mixed Sunday weather-wise. We had sunshine almost all morning and early afternoon, but now we’re having clouds and rain. I’m joining #WeekendCoffeeShare today. I just had a late afternoon coffee (I normally have them at around 2:15PM and it’s almost 3:30 now). I am likely to skip my soft drink, which I normally have at around 3:30, and have some water again when my one-on-one comes on at four o’clock. If you’d like a drink, you’re welcome to grab a soft drink or water or get a Senseo in the kitchen. Let’s catch up.

I already shared on Friday that this week was a rather meh one. So, if we were having coffee, I’d try to focus on other things. I’d share that I’ve been trying to pick up the polymer clay craft again. Yesterday, I finished three labels with “Bedankt” (Dutch for “Thanks”) on them for the three staff who are leaving soon. I still need to cure them in the oven and add glitter glue for decoration. I’m probably going to do that this evening.

I will still need to make real presents for each of the three staff, because I don’t think just a simple label, even if it’s hand-made, is enough. One of the staff is leaving at the end of this month. The other two aren’t leaving till the end of December, so I still have time for those.

If we were having coffee, I would share that I’ve been oohing and aahing at some polymer clay supplies I want to get for Christmas or St. Nicholas (December 5). You need to actually pay for your own St. Nicholas presents, but I agreed with my assigned staff that she could spend around €15 on them and I’d send her a wishlist which she could pick something from, so that I’d still feel a sense of surprise. We do get a small Christmas hamper from the day center, so I told my day activities staff she might talk to my assigned home staff about ordering from the same company as to save on shipping. Some things on my wishlist include cutters, pushmolds and texture sheets.

If we were having coffee, I’d tell you I bought a new essential oil diffuser. I couldn’t seem to clean the other one properly anymore, so all scents were starting to smell the same. I made a note in my Reminders app to clean this one each month, but with how often I’m currently using it, I’ll probably make that every other week. The new one has a remote and two mist settings for normal and strong mist.

If we were having coffee, lastly I’d share that my husband came by to take me out to lunch this afternoon. We’d talked about going to a particular snack and dine place we’d been to two years ago and I’d looked forward to it all week. It was really good back then. Now, not really. The burger we ordered was okay’ish. Not very bad, but not good either. In addition, we had to wait forever to place our order and the staffer really was quite curt. This time, we were asked for our CoronaCheck code, but not our ID, as is required. Oh well.

How have you been?

Suicidal Ideation in Childhood: Some Reflections

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

Desperate Yet Determined #WotW

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

DIY Polymer Clay Owl on a Metal Ring

O(w)live

Hi everyone! I already shared a few times about the polymer clay owl I’d been making over the past few weeks. Now that it’s finished, I finally wanted to show you what the final product looks like and how I created it. I apologize in advance for not having photos of each of the steps.

What You’ll Need


  • A metal ring. Mine is about 12cm in diameter.

  • Polymer clay in your desired colors. You will need colors for the ring (this is the owl’s body), the wings (three pairs), eyes, beak and legs. I used the same color for the beak and legs and for one of the pairs of wings and the eyes.

  • Round (two sizes) and heart-shaped cutters to cut the different body parts.

  • Your usual polymer clay tools, such as a pasta machine or acrylic roller to roll out your sheets of clay before cutting. I used my pasta machine.

  • Plastic eyes to stick onto your owl once baked.

  • Glue for sticking the eyes onto the owl.

How I Made My Owl

First, I cut long, rectangular strands of clay out of my sheet of the color I used for the ring. I went with olive green thinking it meant the owl sat on a branch, because I didn’t realize this was supposed to be its body. I wrapped the strands around the ring. First, I tried curling, but that didn’t work. Then I just made sure the rectangle was just wide enough to cover the entire ring and folded it around it. That worked! I obviously had to cut several strands to cover the entire length of the ring, but that’s okay.

Then I added the wings. I started with the bottom wings, for which I chose the color ochre. I cut them out with round cutters and then attached them to the olive green ring.

Then I did the same with the two other sets of wings. I chose caramel and taupe for the middle and upper wings respectively. I said you need three pairs of wings, but really you need four wings of each of the three colors. At least if, like me, you want the owl to look the same on both sides. Similarly, you’ll need two pairs of eyes (including four plastic eyes), two pairs of legs and two beaks.

After attaching the wings, I went on to the eyes. I used slightly smaller round cutters for those and attached them in a similar way that I’d done the wings. I decided to use ochre again for the eyes. This may seem strange, but I didn’t want to use too many colors and make my owl look too overloading.

I used heart-shaped cutters for the legs and, as you will see in the finished product, attached them upside-down. Sorry, I don’t have a photo with just the legs.

For the beak, I used a kind of half heart shape that I had my staff help me with: I cut out the actual heart (same size as the legs) and my staff cut away the excess clay with a knife. I used an actual feather to stick the pointy holes in the beak, but I’m pretty sure any pointy object will do.

Then the owl went in the oven. I baked it for 60 minutes at 110°C. I know, I know, Fimo and other brands recommend 30 minutes, but, like I’ve mentioned before, there is no way you can bake polymer clay for too long. I let it fully cool before attaching the eyes. I used my jewelry glue for this, but I’m pretty sure E6000 or something like it will work too. I then strung a ribbon between the eyes to hang my owl onto. Voila, here’s O(w)live!

O(w)live

I am linking up with Party in Your PJ’s and Wonderful Wednesday.

Ten Things I Love About Myself

I love journaling prompts and positive challenges. These are combined into the book 200+ Journal Prompts for the Mind, Body and Soul by Riley Reigns. One of her prompts on the topic of self-love is to list ten things you love about yourself. Of course, it shouldn’t require a book of journaling prompts to come up with this idea, but oh well. I am going to take this challenge today and try to take it to the next level by challenging myself not to follow each statement with a “but…”. Here goes.

1. My sense of humor. I particularly love wordplay and verbal jokes, most with a dark theme. I remember, when I was first admitted to the psych hospital, cracking jokes about the difference between the patients and staff in a mental ward (“the patients get better and leave”). I mean, literally during my first days.

2. My intelligence and craving for knowledge. I love to collect facts and information and this I consider a true asset.

3. My perseverance. I am not one to easily give in and ask for help before having tried something myself first. Particularly when I’ve set my mind on accomplishing something, I’ll really go for it. I can also really focus my mind on a topic of my interest.

4. My honesty. I am open-minded, but if I don’t like something, I’ll be truthful about it. I don’t sugarcoat my opinions.

5. My open-mindedness. I consider myself slightly left-leaning politically and a progressive Christian, but am open to people from all walks of life. Even though I am bluntly honest sometimes, I respect everyone who respects other humans.

6. My sensitivity. I am easily touched by the beauty and sadness around me. This allows me to connect to others on a deeper level than I would otherwise be able to and to experience the world more richly.

7. My ability to express myself. I find that both creatively and verbally, I am able to be very open about my experiences and inner world.

8. My generosity. I am not sure that’s the right word. What I mean is the fact that I find joy in making my own gifts for people and especially thinking about what they’ll enjoy. I love it when I can make them smile.

9. My strong-willedness. This allows me to stand up for what I believe in and for what I want even if it is outside of the norm.

10. My resilience. Even though I’m prone to depression, I always find a will to continue fighting.

What do you love about yourself?

Linking up with #LifeThisWeek and Hello Monday.