Gratitude List (July 30, 2021) #TToT

Hi all, happy Friday! I’m joining Ten Things of Thankful (#TToT) today with a gratitude post. Let’s get started.

1. I am so grateful my benefits arrived. Oh well, I spent a significant amount of money already on crafting supplies and my yearly premium subscription to Day One, a diary app. I have once again resolved not to make unnecessary expenses for at least a week. I am however grateful that, even if I do end up spending some money, I won’t go broke anytime within the foreseeable future.

2. I am grateful my staff try to find me things I need or want for free or at a heavily discounted price. For example, one staff was able to get a music pillow for just €1. Another staff gave me some cookie cutters and ziploc bags she didn’t use and her daughter’s old duvet cover. Oh, it feels off to say this right after I’ve told you about my spending my benefits money on crafting supplies.

3. I am grateful to retain my creative mojo. I have really been loving doing some crafts lately, particularly polymer clay and some jewelry-making too.

4. I am grateful that my creative juices flowing means I have something else to talk about online besides my disabilities and health conditions. I am truly loving perseverating on polymer clay in particular.

5. I am grateful for organized storage shelves. Okay, I think I decluttered them a month or so ago already, but with my new crafting supplies, I had to do it again. I’m really satisfied with the space I created without even too much throwing out.

6. I am grateful for pasta salad. My day activities staff and I made this for lunch on Tuesday and there was still some left on Wednesday.

7. I am grateful I haven’t gained any weight in the past week despite not walking as much and despite the pasta salad and other treats. In fact, I lost 200 grams.

8. I am grateful for a nice fill-in community psychiatric nurse. My regular CPN will be on vacation when I was originally next supposed to see her in two weeks, so the other one will fill in. She joined me and my regular CPN for our appointment on Wednesday and she seems nice.

9. I am grateful for a nice new student staff. She is already older, so it’s easier for me to trust her than the young interns.

10. I am grateful my husband is now fully vaccinated. He got his second shot yesterday and he seems to be doing okay.

What are you grateful for?

Unsettling Dream

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

Jewelry-Making #WotW

Hi everyone. Today I’m once again joining Word of the Week. I already shared some of my experiences from the week with you all on Friday. Today, I want to focus on an important positive aspect of the week: jewelry-making. Like I said last week, I got a lot of supplies from my parents for my birthday. I also bought some new supplies later this week.

The actual jewelry-making process is still sometimes hard for me due to my being blind and having mild cerebral palsy. I am making progress though in figuring out what works for me.

First, on Wednesday, I made a bracelet for my day activities staff. She had her birthday that day so was off, but my assigned support staff from the home came to sub. I did all the threading by myself and tried to tie the knot too.

On Thursday and Friday, I was even busier making jewelry. I made my first necklace in a long time. It didn’t turn out as good as I’d hoped and I don’t have a photo, but it is nice enough.

I also made a football bracelet for a fellow client. I originally wanted to make something in the colors of his favorite club, but I didn’t have red and white beads. Instead, I chose green for the grass and added a football charm. This client has his birthday next month I think, so I already decided to make him something in the club colors then.

Lastly, I enthusiastically decided to make a necklace for my niece. She is 21-months-old and I had no idea what the appropriate age for wearing jewelry is. I also added acrylic charms that I later realized she might pull off and put into her mouth.

I texted my sister and she said two to three years is the recommended age for necklaces. I thought of keeping the necklace for my niece’s birthday, but eventually decided to give it anyway when my sister and her family visited me yesterday. I’m confident my sister will be able to keep it safe until my niece is ready for it.

How would you sum up your week?

Word of the Week linky

Creating Lately: A Bracelet, Body Butter and Lip Scrub

After a difficult week two weeks ago and lots of frustration at not finding meaning in my activities lately, last week I finally found my creative mojo again. I’ve been pretty busy crafting and DIY’ing over the week.

First, I want to show you all this bracelet I created last Friday. It is simple and I didn’t even do all the work by myself. I mean, I struggled a lot putting the purple beads onto the wire, because my left hand kept spasming and I needed my right hand to keep the wire straight. I tried reversing my hands and letting my staff hold the wire, but it wouldn’t work. Still, I managed to thread some of the purple beads and all of the roses anyway.

I also have been doing a lot of body care creating lately. Last Monday, I made a basic body butter. I used coconut oil, sweet almond oil and cocoa butter. I added in a few drops of coconut fragrance oil for the scent.

I am considering getting a talking kitchen scale, so that I can weigh out my ingredients myself. Not that we used a scale this time – we just guessed how much we’d need.

Lastly, on Thursday, I made a lip scrub. I used coconut oil and cocoa butter for the base and added plain white sugar, honey and vanilla extract. This time, I did most of the measuring myself, even though I still mostly had to guess how much we’d need.

I had made a lip scrub once before, but that one didn’t turn out as thick as we’d wanted. This one is still thinner than most lip balms I’m used to making, but then again it’s a lip scrub, not a lip balm.

I am really loving looking at bath and body product recipes. I am not as good with them yet as I’d like to be, but I like to think I’m improving.

With respect to jewelry, I don’t look up tutorials, as they’re usually far too difficult for me to follow. I just create what I think I can.

What have you been crafting lately?

#WeekendCoffeeShare (June 4, 2021)

Hi everyone! I didn’t participate in #WeekendCoffeeShare last week, but today, I really want to. Even though it’s nearly 9PM, I honestly still crave coffee. So let’s grab a coffee or other drink and let’s catch up.

If we were having coffee, I would share that the weather has been great here over the past week! I mean, right now I’m almost soaking in my own sweat and wishing it could be a little cooler, but it’s much better than all the rain we had during most of May.

If we were having coffee, I would share that, due to the warm weather, I was able to meet my step goal every day of the week so far. In fact, by yesterday evening, I’d gotten in more steps than during the entire week last week. Woohoo!

If we were having coffee, I would share how much I’ve been enjoying nature lately. On Wednesday, I heard a chorus of frogs when walking beside the local canal. Unfortunately, I didn’t have my phone with me and, when I did later that day and yesterday, they weren’t as loud. I still fully intend on capturing some nature video sometime soon.

If we were having coffee, I would share that today, the water system in my care home had to be cleaned professionally because legionella bacteria had been found. It scared me a little, both the contamination and its associated risks, as well as the method of cleaning, which apparently involved chlor gas. I mean, we weren’t allowed in the building while the cleaning took place, but I somehow got it in my head that I’d be forgotten. I wasn’t, of course.

While we had to be outside of the building for the day, some of my fellow clients went to the day center. The staff proposed I go with some other clients to a monkey zoo called Apenheul, which is in the city of Apeldoorn, about a 45-minute drive from Raalte. I initially didn’t want to go, as I felt I’d just be overloaded. Since I would have one-on-one support for the entire day, my staff said I didn’t have to go if I didn’t want to and could decide this morning to sit in the day center or do other activities. My husband tried to persuade me to go anyway and so I did. I didn’t join my fellow clients and took a shorter route through the zoo. Overall, it was a good experience. My one-on-one took some pictures with my phone. Unfortunately, the monkeys didn’t make many sounds.


If we were having coffee, I’d tell you that I might finally start my topiramate next week. At least, the GP figured out my options for going on a different birth control (because topiramate blocks oral birth control) and okay’d my going on the depo-Provera injectible birth control. She said that she’d get back to my staff next week to make sure I can start it. Thankfully, a nurse at my care facility will be able to administer it. Please everyone pray that this means I can start the topiramate soon. I really could use some relief from my PTSD.

If we were having coffee, lastly I would however share how effective learning to be present has been for me lately. This is an exercise I found in the book Coping with Trauma-Related Dissociation and it’s really quite helpful. I haven’t yet been able to practise it when very distressed, but when I’m at a moderate level of distress, it does help.

How have you been?

Gratitude List (May 28, 2021) #TToT

It’s really been forever since I last did a gratitude post. I’m not too happy at the moment, but maybe doing one will cheer me up. As usual, I’m joining in with Ten Things of Thankful (#TToT.

1. I am grateful for a sunny and warm day today. After weeks and weeks of cold and rainy weather, the sun is finally shining and the temperature rose to 18°C this afternoon. The weekend and next week are supposed to be even better.

2. I am grateful my Braille display will be fixed and hopeful the company won’t claim it’s my fault that it’s broken yet again. Like I said before, they originally claimed I had caused my original Braille display water damage, but they couldn’t prove it, since it’d been lying in their storage for a year. Now this one has similar issues to the other one, but again I have no recollection of ever getting water on it. For now, they are saying there is no reason to think it’s water damage this time around. The problem if it were wouldn’t even have been the one-time expense of getting it fixed (€1500), but the precise fact that I have no recollection of ever getting water on my Braille display and so I can’t prevent the same problem happening again. For now though, I am thankful it will be fixed.

3. I am grateful for my staff, who help me through the hard times I’m going through lately. I experience a lot of triggers and resulting flashbacks. Thankfully, my staff keep reassuring me and all my inner parts, that we’re safe now.

4. I am grateful for my nurse practitioner and community psychiatric nurse. They both help me too.

5. I am grateful for wraps for lunch today.

6. I am grateful for a shopping trip to get some candy and fruit this afternoon.

7. I am grateful for a private WordPress site that I can use as my diary. I still like the iPhone app Day One too, but prefer to type my entries on my computer.

8. I am grateful for horses. Yesterday, some other care facility clients apparently went riding in some type of carriage. While the woman guiding the horses was preparing the wagon, my day activities staff asked whether I could pet the horses and I could! The littles had so much fun!

9. I am grateful for beautiful and nice-smelling flowers.

10. I am grateful for the myNoise and Spotify apps on my iPhone and the ability to listen to beautiful soundscapes and all kinds of music using my AirPods.

Okay, this was easier than I thought it would be. Thank you for reading.

What are you grateful for?

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

#WeekendCoffeeShare (May 2, 2021)

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

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

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

Me on the trampoline.

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

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

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

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

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

How have you been?

#WeekendCoffeeShare (April 18, 2021)

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?

Things That Made Me Smile (March 29, 2021) #WeeklySmile

Hello everyone. I’m still struggling quite a bit today. Like I said yesterday, I have been flooded with emotional flashbacks. To end my day on a positive note, though, I am participating in The Weekly Smile once again. Today, my smiles are food-related.

On Friday, one of the staff came to me to say that she was going to cook a meal for that evening with one of my fellow clients. He and I are the only ones who can eat solid food. Well, that isn’t 100% true, but the other client who can, is a very picky eater, who doesn’t enjoy the types of meals we do. Anyway, the staff gave me the choice between three different dishes we could make with Knorr’s World Dishes series of packages. These are packets of rice, pasta or the like, seasoning and spices, to which you add veggies and meat. The meals I could choose from, were köfta (a Greek meatball dish), nacho casserole and lasagne. I chose the nacho casserole.

The staff and this other client set about preparing the casserole in the afternoon. At around 4:30PM, the evening staff put it in the oven. It was so delicious! The casserole contained nacho chips, minced meat, onions and bell peppers. There was also lettuce to go with it as a side dish, but I didn’t have that.

These packages are for two to three people, so I had more than enough. I have fond memories of cooking köfta myself when in independence training in 2007 and would really like to help prepare it when we get to this one.

Then yesterday, my one-on-one support staff had brought ready-made cookie dough. We made cookies with this and they tasted awesome! Yesterday evening, I had two. I then had the staff take the cookies to the living room to give to her colleagues or any clients who may be able to enjoy them. I fully expected them to be all gone by today, but there were still some left! That definitely put a smile to my face.

What made you smile lately?