Gratitude: Big Things I Am Grateful For Right Now #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter G post in the #AtoZChallenge. Today, I want to share what I’m grateful for. Specifically, I want to share the bigger, more important things in life I’m grateful for right now. Here goes.

First is my relative health. I am at a healthy weight, am able to walk about 5km at a time on good days and generally sleep about eight hours a night. I haven’t felt truly well physically in, well, forever, but I do feel okay.

Next up is food. I don’t have to go hungry. In fact, even though the meal delivery service meals are yucky most of the time, my breakfasts and lunches are good. And the meal delivery service meals are okay in terms of nutritional requirements. Moreover, when I really can’t stand the food we get here, I can afford to buy myself something else.

Finances are up next. When answering some questions for a parody voting guide back in the fall, one of them was whether you have a good income. Even though I’m on benefits, I answered “Yes”. I don’t have to worry about money generally.

Next is the fact that I have a roof over my head. Two, in fact, if counting my and my spouse’s house in Lobith.

Then, of course, I need to mention my spouse. Our relationship has survived many hurdles, so I’m pretty sure we’ll always be soulmates.

With my spouse come my in-laws. I am so lucky to have them! My mother-in-law is my informal representative and my family contact for the care home.

These are just a few of the things I’m grateful for. I could go on to mention the fact that I have a nice bed to sleep in, technology that allows me to communicate with the world and spend my leisure time, and so on and so forth. But instead, I’ll leave you with just this: right now, I’m grateful to be alive.

Hello Monday (October 30, 2023)

Posted on by Astrid

Hi everyone. Oh my, I’ve once again been neglecting my blog. I honestly wouldn’t know why, since over the past few days I’ve felt pretty good. I guess I’ll blame the time of year or something. Anyway, today I’m sharing an update with you all for Hello Monday.

Saturday was a very busy day. It was mostly in a good way, but it still left me feeling overwhelmed. A staff made pancakes for lunch, which were absolutely delish. In the afternoon, I sat down with one of my staff to discuss some of the important life events I want all of my staff to know about. This was intense, as you can imagine.

In the evening, I helped another staff cook macaroni for all of the residents and staff. We started out by cooking the mince, then adding onions, garlic and peppers. We thankfully didn’t have to chop the other vegetables. I turned out to be right about the amount of macaroni we needed. Thankfully, the staff’s estimate had been higher, so we had leftovers rather than not having enough. Unfortunately, neither I nor the staff thought of freezing the leftovers, so I’m afraid they’ve gone to waste.

I had a difficult night with nightmares and interrupted sleep, but it wasn’t as bad as it could’ve been several years ago.

On Sunday, my spouse visited me. We went to Starbucks a second time and, after another caramel frappuccino and a donut for me because the pumpkin spice lattes were sold out, I had to agree that my spouse had been right all along that Starbucks is a waste of our money. I mean, the donut was worse than supermarket ones and truthfully my iced coffee was worse than the one I’d had at McDonald’s several months ago, which had initially made me decide I don’t like iced coffees. However, the problem with that one wasn’t the iced coffee itself but the paper straw. This was an issue now too, of course, but the frappuccino definitely was quite bad.

We also went to Aldi to shop for groceries. I only bought crunchy muesli, since the other things I wanted I’d asked my staff to order from the delivery service.

Sunday evening, of course, it got dark at around 5:30PM already because of the end of daylight saving time. I stayed indoors and watched some TV. We’ll have general elections on November 22, so I watched a humorous political quiz-like program in preparation for it.

Last night, I slept better, thankfully. I went on several walks today. On one of them, I decided to take some fall-themed pictures. The one below was taken a short distance from my care home.

We also visited the petting zoo once again and I took a picture of the guinea pigs.

This evening, I spent my allocated activity time claying with my one-on-one staff for the moment. We both created a flower, though hers looks more like a starfish in shape and due to the colors we used, the center is hardly visible. I usually get some help with my crafting, but this time I loved being able to craft the flower pretty much independently while my staff worked on hers.

Gratitude List (September 29, 2023) #TToT

Posted on by Astrid

Hi everyone. This week has been tough, but there’s light at the end of the tunnel. Let me share a gratitude list. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for warm and cozy pajamas. They’re probably a size too big and the sleeves and legs are too long, but they’re really snuggly.

2. I’m grateful for warm enough weather that I can still wear short-sleeved shirts during the day.

3. I am grateful for the care home’s side-by-side bike. Unlike my previous care home, the new one has its own side-by-side bike for all residents to use. At my previous care home, one fellow client had one and, though I could occasionally borrow it, that didn’t always feel right. Besides, she is significantly taller than me, so her bike was too large for me. So was the side-by-side bike we sometimes borrowed for my physical therapy. I am, for this reason, grateful my current care home’s side-by-side bike can be adjusted to fit my size.

4. I am grateful for speculoos (known as Biscoff in the United States if I’m correct). I have been enjoying this a lot lately. Which reminds me, I need to locate the recipe for Biscoff brownies I once saw on Reddit.

5. I am grateful for sleep. With the exception of last night, I slept quite well here at the new care home most nights.

6. I am grateful for a productive dietitian’s appt on Wednesday. I am sort of grateful for my weight. I say “sort of” because it’s within the healthy range but lower than my and my dietitian’s agreed-upon lower weight goal. Honestly, there are really just two voices competing in my head: one that says this weight is still healthy so scriew my goals and let’s lose more, and one that worries that something medical is going on because I am not restricting at all.

7. I am grateful my staff aren’t really pushing me to be in the living room more. I am also grateful that I can be there sometimes.

8. I am grateful my staff listen to my concerns about the cuts to my one-on-one support and are trying to make things work as best as they can.

9. I am grateful my old home’s behavior specialist also took my and my mother-in-law’s concerns seriously and is going to inform my current home’s behavior specialist.

10. Most of all, I am grateful for a new day schedule. This looks surprising in light of my previous two points, but hear me out. After both me and the staff raising our concerns, my one-on-one was for now raised back to the level it was at my previous care home. This does apparently mean the care home get less money than they spend on me. I for now dropped my wish to actually see the financial paperwork in detail and will stop moaning about how my previous care home cut my budget and blamed the home in Raalte, which after all is as much a theory as the home in Raalte having spent money they didn’t have. Anyway, with my one-on-one back to the old level, my new assigned staff designed an even slightly better day schedule for me than the one at my previous care home. I now will have a 75-minute activity time slot in the afternoon. This should be enough for a medium-level (for me) polymer clay project. Or for baking the aforementioned Biscoff brownies.

The Wednesday HodgePodge (June 7, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge again. It’s been a while. Here goes.

1. Tell me something you remember (or if you’re not there yet, something you look forward to) about being 35.
I turned 35 in June of 2021. Honestly, it was one of the best years of my life so far, even though I didn’t see it at the time. It was the first year I had one-on-one and I started exploring polymer clay that summer, shortly after turning 35. I am pretty sure I made some of my best unicorns that year. At the end of 2021, I remember saying here on the blog that I had the best support I could hope for and now it was time to find the best med combo for me, referring to my wish to taper my antipsychotic. Honestly, looking back, I should’ve stayed in my comfort zone and not made the decision to want to move care homes (also when I was still 35, in April of 2022). Hindsight is 20/20.

2. Last time you “burned the candle at both ends”?
I rarely get up very early. My usual time to wake up is 8AM regardless of the time I went to sleep. That being said, if 8AM is considered early enough to count, I regularly “burn the candle at both ends, as I regularly stay up way past midnight. I remember once going to sleep at past 3AM and getting up before 8AM to get in my stand hours on my Apple Watch. I got 21 stand hours that day.

3. Are you someone with the “gift of gab”? Elaborate (which shouldn’t be a problem if you answered yes teehee).
I had to Google that expression. As for my answer, well, it depends. Sometimes I can talk up a storm, but sometimes I cannot articulate my basic needs.

4. Do you request a special meal on your birthday, and if so tell us what that meal is? Do you want the same kind of cake year after year or will any flavor work? Do you want cake at all? Growing up were birthdays a big deal in your house? Are they a big deal now?
I don’t really get to pick a special meal on my birthday now, although back in the psych hospital we could. Instead, I usually go out for dinner with my spouse and my parents on my birthdays. My spouse and I pick a restaurant. This year, we haven’t chosen one yet even though my birthday is on the 27th.

I don’t care for cake, honestly. My mother’s apple pie is good. So is homemade cheesecake. Other than that, I prefer a large waffle or something like that.

Birthdays were definitely a big deal growing up. That being said, I always managed to ruin mine as well as my sister’s with a meltdown or two. Now, though I like my birthday a little because of the presents, it’s more stress than fun.

5. “Age is just a number.”… agree or disagree? Tell us why.
I completely agree with Joyce’s answer to this question. I can feel all kinds of different ages, but it isn’t like I actually am an eight-year-old.

6. Insert your own random thought here.
I went swimming, yay! One of the student staff has a project on leisure activities for a client and she chose me. During our discussion, we talked about swimming. She initially wanted to go to the nearby lake, but I don’t really like that. It was actually my idea to call the institution pool to ask if there was a possibility for me to go swimming there just once. And there was. It was magical! And the best news is, it’s not just for once. Our home now has a spot to go swimming there each week.

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