Gratitude List (November 27, 2021) #TToT

Posted on by Astrid

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

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

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

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

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

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

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

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

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

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

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

What are you grateful for?

#WeekendCoffeeShare (November 21, 2021)

Posted on by Astrid

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

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

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

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

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

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

How have you been?

Desperate Yet Determined #WotW

Posted on by Astrid

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

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

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

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

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

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

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

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

How was your week?

Word of the Week linky

Gratitude List (November 12, 2021) #TToT

Posted on by Astrid

Hi everyone. I’ve really been struggling lately, which is one reason I haven’t written much. To get myself out of my rut, I thought I’d share a gratitude list. As usual, I’m joining Ten Things of Thankful or #TToT for short. Here goes.

1. I am grateful for salami pizza. We ordered delivery from the local Italian restaurant on Sunday and I had this.

2. I am grateful for the night staff who helped me calm even the slightest bit on Sunday night when I was experiencing severe mood dysregulation.

3. I am grateful for a new book to immerse myself into. I’m reading a collection of short, autobiographical stories from a Dutch GP.

4. I am grateful for relatively good weather again over the past week. We’ve hardly had any rain and, though the temperature was quite low for my liking, at least it wasn’t freezing.

5. I am grateful my abdominal discomfort seems almost gone. I think I’ve finally reached the right dosage of magnesium. We aren’t to evaluate it with my GP until sometime next week though. Fingers crossed.

6. I am grateful my assigned home staff has returned to work part-time again. Like I mentioned before, she had been on sick leave since late September, but she seems to be recovering. She worked part of my day activities shift on Tuesday and my evening one-on-one today.

7. I am grateful for white chocolate. I bought myself a chocolate bar yesterday. I have it in my locked kitchen cupboard so that I can’t consume it all at once, but that way I do enjoy it more.

8. I am grateful for new essential oils. I ordered cypress, mandarin and lavender. Lavender, I’d had before but had used up. The others, I’d never used before. I did have to throw out a few others that I either didn’t like or that had expired, but that’s okay.

9. I am grateful I finished my polymer clay owl. Some people think it looks more like a turkey, but oh well. I’ll write a separate post on how I made it with more pictures later.

10. I am grateful for my staff. I have been extremely depressed lately and have been convinced that they should and will abandon me. While I heard from the manager yesterday that three staff are indeed leaving my care home, this apparently has nothing to do with me and the staff I have the best relationship with, aren’t leaving (yet).

What are you grateful for?

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

A Good Enough Tuesday

Posted on by Astrid

Today is November 2. It’s a Tuesday. A good enough Tuesday, mind you. I didn’t dwell too much on it being the anniversary of my crisis in 2007.

I didn’t really get stressed out about the prime minister delivering another press conference, one in which he’d be announcing new COVID-related restrictions, either. If I’m correct, the press conference is happening right now or has just finished. When I passed by the living room, where the television is, I heard the prime minister say something about “strongly recommending” us to social distance again. Well, whatever. If it’s just a “strong recommendation”, it’s a suggestion, so no-one will do it. Masks are similarly “strongly recommended”.

I didn’t do too much today. Had my blood pressure taken this morning, which was within the normal range (112 over 77) even though I had already been up for a bit. I normally ask that staff check my blood pressure first thing in the morning, because it’s usually up a little when I’ve been active. Not this time though.

I also went to Action, a budget store, to buy some Christmas decorations. I won’t be putting them up till early December, but I wanted to be early buying them to make sure I still had a wide selection to choose from.

I have been wanting to craft too, but that will have to wait till tomorrow. After all, then one of my more creative one-on-one staff will be there for my day activities shift. I will finish the polymer clay owl I’ve been working on.

I did struggle a bit with attachment issues and emotional flashbacks today, but both were manageable. Overall, like I said, it was a good enough day. And that’s totally okay.

Reclaiming November

Posted on by Astrid

Tomorrow is November 1. November is the hardest month of the year, since it is the month in which I ended in crisis in 2007.

Thirteen years later, it was also the month in which I finally broke down and admitted I needed more support than just the care facility’s group home support. On November 8 of last year, I broke down when a staff (the same staff who is now my assigned home staff) asked me to either calm down or go to my room when I was acting irritated at the other clients’ noises. My reaction wasn’t pretty: I hit the staff, screamed I hated her and cried out that indeed, as I’d been saying all along, if I showed who I truly was, she’d abandon me. She didn’t.

During the days that followed, I experienced significant dysregulation, including some near-psychotic symptoms and a lot of sadness. One day, I was crying my eyes out in my room when another staff came in and said she was going to spend her entire two-hour shift with me. We talked and she asked me whether I’d ever heard of one-on-one support. I had, but asked her to elaborate anyway. She did and asked me whether I wanted that. “Yes,” I said. The next day, the staff I’d hit and my then assigned home staff made the paperwork in order, because I had to sign a letter to the manager formally asking for more support. By mid-November, the wheels were set in motion for me to get one-on-one support and my one-on-one was pretty soon effectively started.

Now, as we’re approaching another November, I’m reclaiming the month. I don’t want this to be the month I landed in crisis so many years ago for the rest of my life. Instead, I want it to be the month I chose to get the support I need. I am choosing to stand up for myself, not just because crisis states force me, but because I have a right to do so.

Joining My Vivid Blog’s prompt: “Tomorrow”.

#WeekendCoffeeShare (October 30, 2021)

Posted on by Astrid

Hi everyone. It’s almost 8PM here so I already had my last cup of coffee. Still, I’m joining #WeekendCoffeeShare. Or Weekend Soft Drink Share for me maybe, although I didn’t have a soft drink this evening either. Instead, I decided to have water with my chips. We have Pringles, the original flavor, so if you’d like some, here you go. Let’s have a drink and a snack and let’s catch up.

If we were having coffee, I’d share that, like I said yesterday, the weather was good most of the week. Partly cloudy, partly sunny with maximum temperatures between 13°C and even a rare 18°C on Thursday. Today though, it was raining most of the day. By early evening though, the rain stopped for a bit.

If we were having coffee, I’d tell you that, yesterday, I got in over 14K steps thanks to the great weather. Today, I only managed about 6K steps, but I did get in over 250 steps an hour during seven out of the nine hours between 9AM and 6PM. I consider that quite an achievement!

If we were having coffee, I would ask you all to pray for wisdom for both me and my GP with respect to our upcoming appointment regarding my abdominal discomfort. Like I said yesterday, I am grateful my X-ray was normal, but my discomfort is all but gone.

If we were having coffee, I would share that I ended up not pursuing the issue I mentioned yesterday with the €90 software I bought via PayPal from some shady vendor. I did reach the vendor, but he claimed the problem I was experiencing wasn’t on their side, so there’s no way I’ll get my money back. Oh well, I hadn’t had my hopes up too high.

If we were having coffee, I’d share that I finally did start crafting again. The project my staff saw that she brought the supplies in for today, was a polymer clay owl crafted around a metal ring. She also brought a finished owl she’d borrowed from the storekeeper who had inspired her, so that I had an idea what it should look like. It looked very different from how I’d expected it to look. I started working on the project today.

If we were having coffee, lastly I would tell you that my assigned staff, the one who was on sick leave but is slowly recovering, came to the care home for a few hours again today. Remember how I said a few weeks ago that I worried that I caused her burnout by sucking up her energy? Well, she went out of her way to reassure me that I didn’t make her sick.

She also cooked a meal for dinner with another client. It was a potato, leek and mince casserole. At first, I wasn’t sure I’d like it, but I did.

How have you been?

Gratitude List (October 29, 2021) #TToT

Posted on by Astrid

Hi everyone on this Friday evening. I’m doing a gratitude list again today. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my abdominal X-ray came back all normal. There’s no constipation or excess gas. Of course, this does mean we still don’t have answers as to what is causing my abdominal discomfort and how to deal with it. I have another appt with the GP to discuss further steps.

2. I am grateful my staff, the one who was on sick leave, is slowly returning to work. She came by for a quick visit yesterday.

3. I am grateful for nice weather. Most of the week, the temperature’s been above-average for this time of year, with today it going as high as 17°C. It’s been pretty clear and sunny with no rain too. The weekend is supposed to be different, but oh well, that’s okay.

4. I am grateful for interesting conversations. I’ve been exploring the enneagram again and engaged both my husband and several staff in discussions about it. I got one staff to take a test and, assuming the test typed her right, so did I.

5. I am grateful my creativity seems to slowly be returning. I’m not yet actually creating anything, but I’m exploring polymer clay again. One of my staff is going to bring me some supplies for creating something she saw online or in a book tomorrow and I’m really looking forward to it.

6. I am grateful I had the guts to finally press the “report a problem” button on one of my most recent PayPal purchases. I spent €90 on what looks in theory like pretty amazing software. Turns out though that the license information I was given doesn’t work. I tried to contact the vendor via their website but got an “undelivered” E-mail response. I saw that their PayPal contact info was different, so before proceeding to actually report the problem to PayPal, I decided to try one more time to contact them via that E-mail address. Fingers crossed this will work.

7. I am grateful for yet more newly-discovered essential oil blends. I still haven’t bought more oils in part due to said €90 I might’ve thrown down the drain, but I love learning new ways I can use the oils I do have on hand. I currently have a blend of cinnamon, ginger and ylang ylang in my diffuser.

8. I am grateful for salad again. My day activities staff and I made this for lunch (well, she did the actual making) on Wednesday and there was still some left on Thursday.

9. I am grateful for all the sensory equipment I have right here in my room. On a Messenger chat, we were discussing ways to cope with anxiety and I mentioned my essential oil diffuser, weighted blanket and music pillow. These things make me so privileged.

10. I am grateful I am safe in the care facility. I find it hard to say this, but it’s true.

What are you grateful for?

Gratitude List (October 22, 2021) #TToT

Posted on by Astrid

Hi all on this mixed-bag Friday weather-wise. It’s cloudy with some rain, but the sun tries to peek through here and there too. I seem to have given up on the blogging challenges entirely, but I’m still attempting to write as often as I comfortably can. Today, I’m doing a gratitude list. I’m joining Ten Things of Thankful (#TToT) as usual. Here goes.

1. I am grateful my staff, the one who is on sick leave, was happy with her presents. Like I mentioned before, I gifted her a handmade soap, hand cream and bracelet. Another staff delivered it to her house as to allow me to save money on postage. The staff who is on sick leave, later texted the other staff an audio recorded message for me. It was so sweet!

2. I am grateful for my nurse practitioner and community psychiatric nurse. On Sunday, I landed in a bit of a crisis and E-mailed them, along with my assigned day activities staff and my support coordinator. My nurse practitioner responded on Monday. Though I felt like he was downplaying my crisis a little, my CPN later said that she at least felt that I was doing well because I asked for help.

3. I am grateful my GP takes me seriously. This really could’ve been a grateful for last week, but I forgot to mention it then. As regular readers of this blog might know, I’ve suffered with what doctors think is irritable bowel syndrome with constipation for years, but it’s gotten worse and somewhat different over the past nine months or so. I saw my GP about it a few weeks ago and he initially sent me home with orders for the staff to fill out a rating scale on my bowel movements. Boy, was it embarrassing having to ask the staff to look at my poop! Thankfully, it did show that I hadn’t been misguided about my symptoms. Last week, we went back with the rating scale and the doc examined me again. After discussing me with the gastroenterologist, he decided to refer me for an abdominal X-ray. It’s been scheduled for this coming Tuesday.

4. I am grateful for my husband’s ability to put things into perspective. I have been worried sick (no pun intended) about the possible outcome of said abdominal X-ray. My husband though said that, since I’ve been having symptoms for as long as he knows me, it’s not likely to be anything serious.

5. I am still grateful for topiramate. The increased dosage does seem to do something in the end. Last night, I had dreams about leaving the care facility, but they do not seem to affect me as much as they used to. I call that a win!

6. I am so grateful for one-on-one support. I cannot say this often enough. I am so very grateful my staff aren’t leaving me when I’m in crisis.

7. I am grateful the chili con carne I had for dinner yesterday was better than I expected. I hadn’t had meal delivery company chili in a while since it’s part of their fall/winter menu. However, I’d remembered it as dry rice with dry beans and a tiny bit of mince thrown in. To my surprise, they’d actually added some sauce and there was more mince in it than I expected.

8. I am grateful that the people who were installing blinds on my side of the building, are finally done doing so. Originally, only the other side of the building had blinds on the outside, but some of my fellow clients suffered badly from the sun shining through their windows during the day especially in summer. It took the company several weeks of installing the blinds and they had to be in each room to program them too. Thankfully, they programmed mine to manual, not automatic. Otherwise, if it’s sunny, the blinds will go down, then if a bit of wind blows they will go up, then down again, up again, etc. I’d rather keep them up and just draw the curtains when it’s sunny.

9. I am grateful that, when they were working on my blinds this afternoon, my one-on-one took me to the snoezelen® room at the day center. After all, the noise was quite unbearable. I loved lying on the waterbed while there was no-one in the adjacent room. So nice!

10. I am grateful I had the energy to go on the elliptical for over 30 minutes this afternoon. When I first stepped onto it, it felt as though I’d hardly manage 15 minutes, but I did pretty well.

What are you grateful for?