Gratitude List (January 21, 2023) #TToT

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?

#WeekendCoffeeShare (January 8, 2023)

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I already had my last cup of coffee for the day. I’m going to have a glass of water with my evening meds probably while in the middle of this post. Want a drink too? Maybe I can convince the staff to get you a diet soda. I can’t stand them myself and we rarely have Dubbelfrisss, my favorite drink that isn’t water, coffee or green tea, here. Anyway, let’s (pretend to) have a drink and let’s catch up.

If we were having coffee, I’d tell you that my New Year’s went okay. I went to Lobith. Like I think I mentioned, my husband ordered a waffle maker, so that we could have our own, homemade waffles. Not all turned out as they should, but we had enough of the ones that did turn out good. We spent the evening on the couch watching semi-random YouTube videos, as neither of us wanted to watch the annual New Year’s comedy performance. According to my husband, YouTube decided what we were watching, as he probably had autoplay on. By 11:30PM, both of us were too tired to wait for the clock to strike midnight and we didn’t fancy neighbors coming by to greet us either, so we went to bed.

If we were having coffee, I would share that the first week of the new year has been hard. The home has been short-staffed and many of my fellow residents have been struggling with post-holiday dysregulation. For these reasons and probably others, I am experiencing a lot of disruptions to my care again. I have had quite a few meltdowns lately. I haven’t been as severely self-harming as I was back in late October and November, but quite honestly I’m feeling almost as desperate and the only reason I’m not feeling exactly as desperate is the fact that at least on paper my care is still kind of okay.

If we were having coffee, lastly I would share that my youngest sister-in-law turned 30 yesterday. I am thankful I was able to craft a polymer clay horse for her. Well, not anything like an actual, anatomically correct horse; really just a unicorn like the ones I usually craft but without a horn. My sister-in-law’s real, living horse is called Wolympia, so I called the polymer clay one Polympia. Sadly, I forgot to take a picture before giving it to my husband to give to her.

How have you been?

The Wednesday HodgePodge (December 28, 2022)

Hi everyone. It’s the last Wednesday of 2022, so I’m joining Joyce for the Wednesday HodgePodge. Here goes.

1. Did you set any goals for the new year this time last year? Did you meet them or miss the mark? Tell us more if you’re comfortable sharing.
I don’t set goals. Instead, I call them hopes. That removes the pressure, but they’re pretty much the same. I shared my hopes for 2022 on January 1. For the most part, I sort of reached them early on but completely started falling off course after the move to my current care home. I’m slowly getting back on track.

2. What are three words that might describe the kind of person you were this past year or describe in some way how your life looked?
Transition, stress, creativity.

3. What’s something new you ate, saw, heard, or experienced in 2022? What did you think?
This year was a massively transitional year, since I experienced the move to what I thought would be my dream care home but initially turned into a nightmare. It’s slowly starting to get better though. As a result, I experienced many new things. A tiny one is the fact that I ate mash for the first time in a looong while.

4. Oxford Dictionary has announced it’s word of the year for 2022, and it’s this-goblin mode. Huh? Have you ever heard this phrase? Used this phrase?
No, never heard of it until now. Consequently, I have no idea what it means and honestly don’t know whether I want to know. Oh wait, no, I don’t want to find out, as I just saw that Joyce had the definition written out and I skipped over it. Or maybe now I do want to find out.

If you were in charge, what word would you declare word of the year for 2022?
Russification, if that’s a word in English too (it is in Dutch). We need to be aware of what’s happening in Ukraine and especially the parts of it completely under Russian control, like Mariupol.

5. Any special plans for an end of year celebration in your house or town? The travel channel says the world’s best New Year’s Eve celebrations will happen in Copacabana Beach-Rio de Janeiro, the Orlando theme parks in Florida, London, Sydney, New York’s Time Square, Edinburgh Scotland, and Paris. If you could attend any one of these which would you choose? Tell us why?
I will be going to Lobith for New Year’s . My husband just ordered a waffle maker online so that we can make waffles then. He also said he bought Airfryer snacks.

If I had to choose any of these destinations to visit during New Year’s, it’d be Sydney because it’s summer there right now. Then again, I don’t have any desire to visit there otherwise. I would like to go to Edinburgh someday, but not in winter.

6. Insert your own random thought here.
I’m probably going to end the year on a positive note, as my support coordinator returned from her vacation yesterday and did part of my one-on-one this evening. That’s not the positive news. The positive news is the fact that she said my day schedule is good as it is.

The Wednesday HodgePodge (December 14, 2022)

Hi everyone. It’s Wednesday again, so I’m participating in the Wednesday HodgePodge. Not that I do so each Wednesday or that Joyce even hosts them every single week. For example, next week there won’t be one. This week’s HodgePodge is mostly Christmas-themed. Here goes.

1. What does Christmas mean to you?
The birth of Jesus Christ, of course. I am a progressive Jesus follower. That being said, I don’t follow the faith nearly as deeply as I should. Each year around Christmas time, I usually experience a deepened connection with God, but I’m not feeling it this year yet, for which I’m sad.

2. What’s your favorite cozy holiday activity?
Eating cinnamon stars near the Christmas tree. Cinnamon stars, a type of cookies, are my absolute favorite Christmas treats. Last year, I got four packets of them from my day activities staff and used up the last of them in early March.

3. Is all your shopping-wrapping-baking done? Tell us about your holiday plans.
Yes or no, depending on your perspective. After all, we don’t really do Christmas presents in my husband’s family and I don’t see my own family for the holidays at all. I don’t usually send out Christmas cards either, although my husband does on my behalf too.

For Christmas, my husband is going to pick me up at the institution and take me to my in-laws’ house near dinnertime. That way, I hopefully won’t have to endure too much of the Christmassy buzz but my husband’s family will be able to enjoy my company. My sisters-in-law will likely be joining us for dinner too. Then, I’ll spend the night at my husband’s.

4. If you were Santa what treat would you like to have left for you (it doesn’t have to be milk and cookies!) What sweet or savory treat do you most look forward to indulging in around the holidays?
Leave me with some hot wings please, yum! As for my most looked forward to holiday treat, other than the aforementioned cinnamon stars, I love oliebollen at New Year’s. Do those count? By the way, for my American/English-speaking readers, oliebollen may look like what’s left over when making holes in donuts, but they taste very differently.

5. Next Wednesday is the first official day of winter (in the northern hemisphere). How does that make you feel? Tell us what you love most about winter?
I don’t like winter, the cold, shorter days or snow for that matter, so the official start of winter to me signifies the shortest day of the year and hence the fact that days are getting longer from then on. The one thing I do love about winter are its associated holidays, such as St. Nicholas, Christmas and New Year’s and the opportunity to indulge in special holiday treats these occasions provide.

6. Insert your own random thought here.
I got a lovely Christmas hamper full of sweets, cookies and chips from the care agency this evening. There was no room in my bin in the locked storage room for it, so I have everything with me now. Let’s hope this doesn’t end in a massive binge.

Gratitude List (December 3, 2022) #TToT

Hi everyone. I did a complaint post yesterday and honestly am still feeling like crap, but wallowing in it isn’t going to help. Instead, for this reason, I’m going to write a gratitude list. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for my husband. He sticks by me through the hard place that is this new care home.

2. I am grateful for my mother-in-law. She tries to stand up for me to the powers-that-be too.

3. I am grateful for my old day activities staff. They visited me on Thursday and we had an extensive lunch together.

4. I am grateful for an opportunity to create another polymer clay flower. And a strawberry. Unfortunately, that having made that morning a relative success, was used by my staff as an opportunity to silence my mother-in-law’s attempt at speaking to the higher-ups.

5. I am grateful for the support of my online friends.

6. I am grateful that my most recent major self-harm episode, early Wednesday, didn’t cause any lasting damage.

7. I am grateful for quetiapine (Seroquel), my PRN medication. It hadn’t been refilled when I had run out of it a while ago, so I was without it when I badly needed it a few times this week. This was one of the reasons I had my major self-harm episode. However, I am so thankful it got refilled.

8. I am grateful for an electric heater. Since my heating broke down, my husband eventually called the care home to tell my staff they had to provide me a way to stay warm until my heating got fixed and they thankfully listened. Unfortunately, it seems the thing broke down as I was typing this post.

9. I am grateful the repair crew came out to fix my heating earlier this evening. Because of the type of heating, it may take up to 24 hours before my room will be comfortably warm though.

10. I am grateful for distractions in the form of books and podcasts and blogs. I may want to dive into the disability activist blogosphere once again, assuming such a thing still exists.

What are you thankful for?

Joy in October and November

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

#WeekendCoffeeShare (November 12, 2022)

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

Visiting Extended Family

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my spouse a kiss when we last saw her in 2016. My spouse politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Five Things That Bring Me Joy on Bad Days #5Things

Hi everyone. I have been feeling notoriously uninspired lately and still don’t really feel like I know what to write about. However, I saw this week’s topic for the #5Things challenge: things that bring you joy when you feel “joyless”. In other words, we’re challenged to list five things that bring a smile on our face when we have a bad day and nothing else can seem to cheer us up. Here goes.

1. Food. Good food can definitely brighten even my darkest days. I am a lover of hot and spicy food, but also enjoy candy and savory snacks.

2. A phone call from my husband. Whenever I feel down in the dumps, my husband can usually cheer me up. Sometimes it takes him some firm setting my mind straight before I am open to cheerful talk.

3. Music. I love upbeat music, including Dance, contemporary Christian and occasionally rock. At other times, calming music is just what I need.

4. Physical activity. When I can motivate myself for it, a walk or some other form of exercise truly helps me clear my mind of all its negative energy.

5. Retail therapy. I can be a bit of an impulse spender when I’m feeling bad. Thankfully though, even online window shopping helps me feel better at times.

What helps you feel better when you’re feeling down?

#WeekendCoffeeShare (September 24, 2022)

Hi everyone on this rainy Saturday. How are you doing? Take a seat and have a drink, as I’m joining #WeekendCoffeeShare.

If we were having coffee, I would start out by sharing that last Monday was my and my husband’s eleventh wedding anniversary. We drove to Steenwijk, a town in the far north of my province, where we had lunch and went for a short walk. Then we drove to Blokzijl, a small town not far from there, where we had another walk around town and my husband took a photo of me with a large cannon.

Then we drove to Ikea in Zwolle, where my husband bought a few things, I looked for a new desk chair, and we had dinner. Unfortunately, they only serve the vegetarian version of the Swedish meatballs now, so I had chicken.

If we were having coffee, I would tell you I got a new pasta machine from one of the staff – the staff who always gives us clients everything she finds at thrift stores. This one works electronically or so she told me. I didn’t tell the staff that any pasta machine is hand-operated by default and a motor is optional. This one does have a motor. I did E-mail another staff to ask her to bring her tool kit one more time to remove the fenders for me.

If we were having coffee, I would share that the dietitian showed up unexpectedly for an appointment yesterday. The reason was the fact that I’d lost quite a bit of weight and had been compulsively exercising a lot over the past few weeks. Although the compulsive exercising seems to have reduced this week, I did need a bit of a reverse kick in the behind. You see, I have a history of disordered eating, bordering on bulimia, and although my main means of compensating used to be purging, this could definitely become a thing with over-exercise too. I do need to monitor this closely.

If we were having coffee, I would use the rest of this post to update you about the prospective new care home. I didn’t write a coffee share post last week, so those visiting from there might not know this, but the client in whose place I could come at the home at the main institution, moved out this Thursday. I had my first orientation visit with the prospective new home last Wednesday, am getting another on Monday and, if then I want to move, moving date has been set for October 5.

My first orientation visit went quite well. The clients are quite verbally capable, although of course they do “live in their own world”, as the support coordinator phrased it. The apartment – separate living room, bedroom and private bathroom – is quite large, although I couldn’t fully grasp its size because the client who was moving out had a lot of furniture. My husband did ask whether I would have to clean the apartment myself, but I assume not. I asked though just to be sure.

I love the fact that there are a lot of sports and recreational facilities on grounds, although the staff aren’t yet able to say how we could fit those into my day activities.

A great positive of the possible new home is that they cook their own meals everyday. Yay for no more meal delivery service junk!

My husband is coming to have a look around the home on Monday too, so he may be able to ask his questions too. I am quite excited but still a bit nervous.

How have you been?