Gratitude List (May 6, 2023)

Posted on by Astrid

Hi everyone on this first Saturday of May. I’m joining Ten Things of Thankful (#TToT) for a gratitude post today. Here we go.

1. I am grateful for a trip to buy some new plants for in our care home garden last Saturday. One of the student staff had been planning on us having a vegetable garden here. While that’s not exactly gone to plan, we do have a few flower beds and some space for vegetables too. I loved helping pick out the first few flowers and plants.

2. I am thankful for new duvet covers. My husband last week told me he needed new ones for our bed in Lobith. Too bad twin bed duvet covers don’t come in cute colors, but those for my single bed do. I got one with rainbows on it and one with butterflies on it.

3. I am grateful for sleep. I have been able to sleep reasonably well over the past couple of days.

4. I am grateful for some success with physical therapy. The physical therapist came by on Wednesday to try to do some yoga exercises with me in order to help me loosen up my muscles. It was hard but rewarding. I am grateful my assigned staff said I can have a staff member with me during physical therapy even when it’s not during my allocated activity time.

5. I am grateful for nice weather on Thursday. We hit 20°C for the first time this year that day.

6. I am grateful for no thunderstorms that I was aware of yesterday. A lot of rain, hail and thunder had been predicted, but thankfully I was indoors when it rained and, insofar as we got any thunder at all, it was far enough away not to make me startle.

7. I am thankful for a lot of compliments on my skirt and shirt that I wore on Thursday. These aren’t really suited to the colder months (unless I find panties or leggings that will go with the skirt, but I only have black panties now). Most clients really liked my outfit. I bought both the skirt and shirt relatively recently.

8. I am grateful for ice cream. On Thursday, two staff took me and another resident to Deventer, the nearest city, to get ice cream. We originally intended to go to a place that’s supposedly really good, but couldn’t find a space to park near there, so decided to go to Talamini, an ice cream chain that’s good too. I had caramel and Kinder Bueno, a candy bar flavor, on a cone. Unfortunately, I did get the ice cream all over my skirt, shirt and into my hair.

9. I am grateful to have been supported by my assigned staff more than usual lately. She also makes it clear that it isn’t like she’d been avoiding me, but that, with all the chaos and crises among other clients and her being a regular employee here, it just isn’t always possible for her to support me regularly.

10. I am thankful I haven’t lost all hope yet. Sometimes, it feels like it, but I am glad I can still appreciate the little things in life.

ZZZ: Sleep Issues in People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. Almost every year, my final post in the #AtoZChallenge is about sleep or “ZZZ”. This year is no different.

Sleep problems can affect anyone, disabled or not. However, sleep disorders, including sleep apnea (sleep-related breathing disorder) and insomnia, are more common among people with intellectual disabilities than among the general population. In fact, one review found that as many as 31% of adults with intellectual disability experienced more than one sleep problem. More severely intellectually disabled individuals, those with certain genetic syndromes and those with comorbid neurodevelopmental disorders such as autism, are at particularly increased risk of having more sleep disturbances.

Sleep problems can cause physical and mental health problems in intellectually disabled people just like in the general population. However, they can also contribute to challenging behavior.

There are many factors associated with sleep problems in intellectually disabled people. For example, those with comorbid autism and/or ADHD are at increased risk of having sleep disturbances. Those with certain genetic syndromes, too, may experience certain sleep disorders. I mentioned sleep apnea already in my post on Down Syndrome. People with Smith-Magenis Syndrome, on the other hand, often experience an inverted circadian rhythm.

Environmental factors also need to be considered. For instance, a care home may not be ideal for people with intellectual disabilities to sleep properly due to for example night staff checking on them frequently. This does not happen here. What happens here rather frequently is the reverse, staff leaving clients to “rest” in a sensory room or their bedroom during the day.

The management of sleep disorders in people with intellectual disabilities is somewhat similar to that in the general population. However, more care should be taken to rule out medical conditions such as epilepsy or sleep apnea as the cause for poor sleep. The only medication which is somewhat effective for sleep issues in intellectually disabled people, is melatonin.

Now it’s 10PM and I’m ready for bed myself, I guess.

Gratitude List (March 3, 2023)

Posted on by Astrid

Hi everyone. I’m feeling a bit gloomy today, so I’m trying to cheer myself up with a gratitude list. As always, I’m joining Ten Things of Thankful (#TToT). I’m also joining Thankful Thursday, although it being Friday, I’m of course a day late. Better late than never, I guess. Here are my thankfuls.

1. I am grateful for my new laptop. My husband installed Windows and JAWS, my screen reader, on it last Saturday and brought the laptop here on Sunday. So far, I’ve not run into many problems.

2. I am grateful for my unicorn cookie/clay cutters. Like I mentioned a few times, these are a Valentine’s Day present from my husband. I haven’t used them yet, but I think I do like them.

3. I am grateful for some renewed creative inspiration. Too bad this doesn’t really translate into action yet. Here’s hoping it will. I’ve been thinking of restarting soap making again, for example.

4. I am grateful to be back in the reading groove.

5. I am grateful for sleep. Although early in the week, I didn’t sleep all that well, last night and the night before, I did meet my goal of getting eight hours of sleep according to my Apple Watch.

6. I am grateful for improving physical fitness and more walking.

7. I am grateful my orthopedic shoes are back from the umpteenth adjustment. Let’s hope they’re actually right now. So far, at least, I have been able to go for a short walk on them.

8. I am grateful for another nice visit from my mother-in-law yesterday. Normally, she visits on Tuesdays every other week, but we were supposed to have the meeting about my care situation yesterday. The meeting was canceled, but thankfully my mother-in-law visited me anyway.

9. I am grateful for French fries for lunch yesterday with my mother-in-law. And fried chicken. And a little salad. It was delicious!

10. I am grateful for a relatively quiet past few days in the care home I live in with respect to hardly any out-of-control fellow residents. Well, I heard one screaming just when my staff was leaving me after dinner, but it seems calm again.

11. On that note, I am grateful I got through my latest crisis, which involved self-harm, without sustaining major damage. I usually don’t suffer major physical wounds, but I know with my most used self-harm method, it could happen any day.

What are you grateful for?

Alarm Anxiety

Posted on by Astrid

I just came across an interesting concept when reading Pat’s Soapbox Thursday for today: alarm anxiety. Alarm anxiety is the fear of the alarm not going off or of not getting enough sleep before it does. When I read her description, immediately alarm bells (pun intended) went off in my head. This is what I dealt with throughout high school and into university.

When I was at secondary school, I’d compulsively check that my alarm was on. Since my alarm was at the other end of the room and I couldn’t visually check it due to being blind, I had to physically leave my bed to do so. And I’d do so at least thirty times a night. And worry that, by the time I’d finally fall asleep, if my alarm did go off, I’d still sleep through it because I hadn’t had enough sleep. This only happened once in my entire six years of secondary school.

I had other compulsions too, but these are too embarrassing to share here. In general, I’d spend hours engaging in my various rituals at night. I wouldn’t necessarily say I had OCD, as these obsessions and compulsions only affected me at night.

They got a lot worse when I lived independently and went to university. I had to check whether my front door was locked, all non-essential electronics unplugged, window open, heating off, alarm on and I’m pretty sure there’s something I’m forgetting right now. All of the things that needed to be checked, were for a reason, of course. For example, the heating needed to be off in case of a carbon monoxide leak (even though I didn’t have my own boiler) and the window needed to be open so that, if such a leak occurred, the chance of me getting poisoned would be lower.

I’d spend hours upon hours pacing through my apartment checking that these things were as I needed them to be. It was exhausting!

Thankfully, my compulsions left immediately when I was admitted to the psychiatric hospital. Either the fact that a staff member was on the ward at all times, comforted me, or the mere fact of my having been removed from my apartment and its specific triggers, caused me to be able to let go. And, of course, alarm anxiety was no longer a thing, as the staff would wake me. Besides, we weren’t required to be up by a certain time anyway.

Gratitude List (January 21, 2023) #TToT

Posted on by Astrid

Hi everyone. I’m once again (or still) struggling a lot. Each time I think I see a glimmer of hope, it gets crushed one way or another and the bottom line is that I’m probably stuck in this dark pit for a while still. For this reason, I thought I’d do a gratitude post once again in order to remind myself there are still positives out there. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for Apfelstrüdel. This is, or so I believe, a German type of baked goods with apple and cinnamon. Last Sunday, my husband and I went to have lunch at La Place, a type of restaurant, and their Apfelstrüdel was on sale. Even though it’s sweet, I decided to have it as my main part of the meal.

2. I am grateful for a trip to Action, a discount store, with my husband on Sunday. I bought cleaning wipes, toothpaste and crocheting supplies.

3. I am grateful my assigned staff is back at work after being on vacation for a couple of weeks.

4. I am grateful for another visit from my mother-in-law on Tuesday. It was good.

5. I am grateful for apples, bananas and blueberries. We didn’t have fruit during most of the week, so on Sunday, I bought apples and bananas when at Aldi with my husband. Then on Tuesday, I bought blueberries. I am grateful that, on Tuesday, my mother-in-law reminded me to buy my own peeling knife. You see, the care home’s kitchen is being reconstructed, so all kitchen supplies are in boxes. Had I not bought the peeling knife, my staff wouldn’t have been able to peel and cut my apples.

6. I am grateful for sleep. Over the past week, most days, I got at least reasonably good sleep.

7. I am grateful my cold, which I’ve had all week, seems to be getting a little better. At least I’m not sneezing like crazy anymore.

8. I am grateful my husband ordered new walking shoes for me, to be delivered to my in-laws today. He isn’t coming by for a visit tomorrow because of my cold symptoms, but will bring them along next week.

9. I am grateful a staff helped me manage the chain stitch of crocheting today. I already had some practice with it before, but it was always hit and miss. I am hoping to learn some more stitches someday once I get confident working with this one.

10. I am grateful for a long walk this afternoon. I am also grateful that, despite having limited energy this morning, I was able to have a relatively good time for most of the day.

What are you grateful for?

My Bedtime Routine

Posted on by Astrid

Hi everyone. I’m feeling a little stressed out and, as it is past 9PM as I’m starting to write this post, I thought I’d share about my bedtime routine in order to get myself comfy and relaxed for bed.

Usually, the staff come by my room at around 9:45PM to help me get ready for bed, like get into my pajamas and brush my teeth. I usually leave my socks on, as I’ll often want to stay up a little longer. The evening shift here at my current care home ends at 10:30PM, so the staff usually say goodbye then too and turn off my light. In the care home I may move to on October 5, the evening shift ends at 10PM, so I may want to move my bedtime back a little.

I can go into bed by myself, but sometimes I want the staff to stand by while I go into bed. I will pull off my socks. Then, I’ll grab my iPhone if it’s sufficiently charged and select a Spotify playlist to play on my music pillow. The music pillow is connected to my iPhone via its lightning port (and a lightning-to-audio converter). I love the Harp Lullabies playlist, the Guitar Lullabies playlist or some albums by Robbins Island Music Group or Dan Gibson’s Solitudes. I most commonly set the sleep timer for an hour.

I sometimes will have an essential oil blend in my diffuser too. Some aren’t very suited to sleeping, but I know of a number of relaxing essential oil blends, four of which I shared before.

I have a weighted blanket, which I pull up over me almost till my chin. I also will grab ahold of one of my soft toys. Sometimes, I’ll lay the tail of the lemur over my chest, while at other times, I’ll hold the dolphin or unicorn.

Sometimes, I need to shift my sleeping position. I can sleep in every position except on my right side, but my preference will vary. Once I’ve found a comfortable position, I’ll likely doze off pretty quickly.

The night staff does come by at around 11:30PM to check on me. This is mostly to prevent me sitting up all night without anyone noticing. I can also press the call button if I can’t sleep, but of course other than try to comfort me, there is little the night staff can do. That being said, I sleep a lot better now that I have the weighted blanket, music pillow and essential oil diffuser than before I had all these.

loopyloulaura

Gratitude List (April 29, 2022) #TToT

Posted on by Astrid

Hi everyone. I am feeling a bit meh today. I don’t really feel like writing a gratitude list, but I do feel like writing something and I can’t think of anything else to write. For both of these reasons – to have something to write and to cheer myself up -, I am going to try to write a thankful list anyway. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for pizza today. Yes, again. Another staff is leaving and she wanted to give us pizza or pasta from the local Italian restaurant as a goodbye present.

2. I am grateful I was able to give the staff who’s leaving her present. I didn’t end up making something for her myself and initially wanted to stay in my room while the other staff gave the presents to this staff, but I am grateful I decided to go and give her one of the gifts the other staff had bought on behalf of us clients.

3. I am grateful for quiet time to write. It’s now nearly 9PM and between 6PM and 7PM, a guy from the home next door was blasting his music on top volume. Even with noise canceling headphones (unfortunately still the ones I have on loan) on, I still could hear the music clearly. I’m so glad it’s quieted down now.

4. I am grateful for a good phone talk with my mother-in-law on Wednesday. I was able to tell her I’m going to discuss entering the process of finding another care home. To my surprise and gratitude, she fully supports me.

5. I am grateful for a nice phone call with my mother on her birthday yesterday. I obviously didn’t tell her I’ll be looking for another care home. We made some smalltalk and it was okay.

6. I am grateful for sleep. Despite feeling quite on edge lately due to a lot of issues, I am sleeping relatively well.

7. I am grateful to have been able to go to the day center for a considerable time twice this week.

8. I am grateful for funny stories to listen to on YouTube. There is a Dutch children’s book author called Jacques Vriens who read his own stories aloud on YouTube. There are also English-language YouTube channels for children’s stories, which I also love, but Jacques Vriens is a childhood favorite of mine.

9. I am grateful I was able to go onto the large trampoline on Wednesday. It was great fun!

10. I am grateful to be relatively financially secure. I won’t go into detail here, but I am just happy my husband and I can handle a little financial setback.

What are you grateful for?

Sunday Ramble: Habits and Routines

Posted on by Astrid

Hello all on this beautiful Easter Sunday! Today, I’m joining the Sunday Ramble, for which the topic this week is habits and routines. Here are Amy’s questions.

1. Do you have a daily routine that you are used to, or do you just go with the flow of the new day?
I usually get up and go to bed around the same time. I also eat breakfast, lunch and dinner at the same time most days. However, with respect to the activities I do inbetween, I usually go with the flow. After all, I just don’t always fancy doing the same things each day, don’t have the same level of energy, etc.

2. Do you do anything in your life habitually that you wish you could stop?
I guess I have quite a few bad habits. I’m learning not to overeat, but I still eat much faster than I’d like.

I also bite my nails. I tried to stop when I first started working with polymer clay, thinking that I could ingest polymer clay that got stuck under my nails by biting my nails. Unfortunately, I couldn’t stop.

I also twirl my hair, which my autism diagnosing psychologist once told me was a “serious social handicap”. Well, I was just beginning to recover from a psychiatric crisis at the time, so I couldn’t care less.

3. If habit was the acronym H.A.B.I.T, what would it be short for?
Helpful Actions Bring Infinite Thankfulness.
That’s a way of turning HABIT into something good!

4. Are we born with our bad habits? Or do we acquire them from the environment surrounding us?
I think, like most of our traits, it’s a combination of both. We are born with a predisposition to, for example, nervousness, addiction, etc. However, the exact nature of our bad habits and whether they make it into actual compulsions/addictions/etc. or not, is largely determined by our environment.

5. Are you a night owl, early bird, or something else when it comes to sleeping routines?
I am naturally more of a night owl, but I also need a lot of sleep. I’ve gotten used to going to bed at around 10:30PM and getting up at 8:30AM. That probably makes me something in between.

Poem: Take Shelter

Posted on by Astrid

It’s safe here,
guarded.
You can cuddle up.

It’s cozy here,
comfortable.
You can be secure.

Nightie-night.
Close your eyes.
You can rest now.

I hope you sleep well,
taking shelter
in the abyss.

This poem was inspired by one of the prompts in Reena’s Xploration Challenge #226. This week, Reena gives us a series of book title suggestions as inspirations for our post. I decided to use the first one as inspiration for this poem. I am also joining dVerse’s OLN, as well as Friday Writings #22. I didn’t quite understand the optional prompt for this week and the part about reusing words to craft a piece that’s of higher quality than the original, feels a bit, well, paradoxical to me. After all, I’m pretty sure I screwed up the original intent of that book title generator quite badly with this poem, but oh well.

Ways in Which My Life Has Improved Over the Past Few Months

Posted on by Astrid

Lately, as I’ve been recovering from COVID and as the news of the war in Ukraine has been intensely scaring me, I’ve focused more than I would like to on how my life has seemed to have spiraled out of control. Staff changes at my care home also contribute to my feeling of insecurity. This combined leads me to feel that I am worse off than I was a few months ago and getting worse by the day. For this reason, a prompt that I came across in one of my journal writing books, is particularly compelling to me right now. It asks me to describe in what ways my life has improved over the past couple of months. Here goes.

1. I sleep better. I am pretty sure this isn’t entirely due to the lingering effects of COVID, though they do play a role. I am pretty sure the new medication, pregabalin (Lyrica), also helps. I feel a lot more rested when waking up, have fewer nightmares, etc.

2. I am less anxious. Though I still experience night-time anxiety, it has significantly decreased particularly over the past couple of weeks. I am pretty sure this is thanks to the pregabalin too.

3. I have been able to be more creative. I have truly discovered my artsy side over the past couple of months. I do still stay somewhat in my comfort zone, but am exploring ways to step outside of it just a little bit too.

4. I have started on a healthier food plan. This is hard, but it is more doable than I initially expected it’d be. Though I let things go a little when I had COVID, I only gained like 0.2kg from before I got sick. Overall, I’m not disappointed.

5. I have developed some more trust in some of my staff. This is still fragile and it is even more so with the staff changes. For this reason, we have let go of the word “trust” for the most part when referring to my relation to the staff and called it “acceptance”. I feel proud of myself for admitting that I am beginning to trust a couple of staff members rather than just accept them.

Though some of these things seem to be outside of my control, they really aren’t. I mean, I have to thank the pregabalin for my decreased anxiety, but I also do practise relatively good self-care by sleeping with my music pillow when stressed, for instance. I think, by the way, that it helps to hold the view that, though my life isn’t in my hands, my choices are within my control.

How has your life improved over the past couple of months?