Gratitude List (October 22, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m feeling very overloaded today, but it’s too early for me to go to bed or I might wake up in the middle of the night and not be able to go back to sleep. Instead, I’m writing a gratitude post. As always, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to let go of the issue with the staff from two weeks ago.

2. I am grateful for delicious home-cooked couscous, which a staff member who is originally from Morocco shared with me and a few others at the care home on Sunday.

3. I am grateful I beat this same staff member 4-0 in the card game mau-mau again today, but also grateful he beat me on Thursday. I think I told you all last week that he’s learning the game from me, so I love it when he wins (but I love it just a bit more when I win!).

4. I am grateful I was able to try out polymer clay a few times this week. So far, all of my projects failed before I even attempted to bake them, but that’s okay.

5. I am grateful for white chocolate. I consumed quite a bit of it over this week.

6. I am grateful my medication got sorted. It was quite the ordeal last Saturday and I actually called the out-of-hours GP surgery, not knowing that, if my staff said I could cope without meds for a day or possibly two, that meant a doctor had actually said so already. In the end, I got my Saturday morning meds at around 9PM and am now thankfully fully in the electronic medication system.

7. I am grateful for quetiapine. I just took one about half an hour ago and thankfully, it’s calming me.

8. I am grateful for fish. Doubly grateful, in fact. Last Saturday, my staff took me to the marketplace for fish and, this afternoon, the staff ordered fish for everyone at a fish shop in the next town.

9. I am grateful for warm weather. The daytime temperature hardly got below 15°C this past week and, for the past several days, it’s been 18°C.

10. I am grateful for a nice, long walk across institution grounds and through the nearby forest with a fellow resident ant two staff. I regret not having taken my phone with me so that I could have taken pictures.

What are you grateful for?

The Wednesday HodgePodge (October 19, 2022)

Posted on by Astrid

Hi all. I’m joining the Wednesday HodgePodge again. This week’s questions are truly random or at least I cannot see a common theme to them. I don’t mind though. Here goes.

1. What’s something you wish you’d figured out sooner?
That I am the beloved of God and that it really doesn’t matter what my family or anyone else thinks of me in the end, God will ultimately judge my heart.

2. Something from childhood you still enjoy today?
Swimming, playground equipment (when it’s strong enough to carry adult me, such as here at the institution), children’s books.

3. Are you a fidgeter? What’s the first thing that comes to mind when you hear the word fidget?
I am a definite fidgeter! The first thing that comes to mind is hair twirling. I’ve done it since adolescence. When I was 21, my autism diagnosing psychologist in fact told me I really had to unlearn it because it was a “serious social handicap”. Thankfully, the only people who agreed were my immediate family, who had more or less abandoned me by this time anyway.

4. Your favorite fall vegetable? How do you like it prepared?
Broccoli! In fact, about a month ago, I was discussing with a former staff what vegetable I’d choose if I could eat only one for the rest of my life and I picked broccoli. It is such a versatile vegetable. I love it cooked plain or with a creamy sauce, stir-fried or even raw in a salad. Next up are carrots. I eat them raw as a side to my lunch almost everyday.

5. What’s something you find mildly annoying, but not annoying enough to actually do anything about? Might you now?
My headphones (the cheap Chinese brand ones I bought six months ago as a replacement for the Bose QuietComfort 45 ones that broke within three weeks of me having bought them) being basically useless as wireless headphones due to the battery draining very quickly. I have been intending to replace them for a few weeks, but can’t decide for sure on a new model. For now, I’m using my AirPods with my iPhone, but this is indeed slightly annoying.

6. Insert your own random thought here.
I’ve been in the main institution care home for two weeks today and it’s going pretty well. We had some issues early on, among other things with my medication, but all has been sorted now.

Saying Goodbye to Mental Health Services

Posted on by Astrid

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

A Rather Frustrating Monday

Posted on by Astrid

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

#WeekendCoffeeShare (August 6, 2022)

Posted on by Astrid

Hi everyone on this first Saturday of August. Okay, that starting phrase gets boring, but who cares? Well, me, but I can’t think of any better way to start my post. I’m joining #WeekendCoffeeShare today. I’ve had five cups of coffee already today and it’s mid-afternoon. Want one too? I hope I haven’t used up the whole pot. Well, it’s a virtual coffee share. Let’s have a coffee and let’s chat.

If we were having coffee, I’d ask about your weather as usual. Ours has been mostly warm, sometimes hot. On Wednesday in particular, the daytime temperature rose to 31°C. Today, it’s only about 21°C. I even wore long sleeves this morning when going out for a walk.

If we were having coffee, I would share that I discovered a function I hadn’t previously known about existed in JAWS, my computer’s screen reader. When you press INSERT+4, INSERT being the designated JAWS key, JAWS displays a menu with special characters to select from, such as the euro sign, the degrees sign I used above, etc. Before I knew about this function, I’d do a Google search for something that’d pop up the character I wanted, copy/paste it into a text document and copy/paste from that document to my blog. However, if I wanted a character that wasn’t yet in the document, I’d need to do a search all over again. Besides, it’d mean having to open a separate app, in this case Notepad, and copy/pasting from there rather than selecting the character from the menu.

If we were having coffee, I’d share that, today, I started on 25mg rather than 27.5mg of aripiprazole (Abilify), my antipsychotic. So far, so good, but I’m not expecting any effects as of yet, as aripiprazole has a half life of 72 hours and the dosage decrease is so small anyway. This is my second decrease out of possibly twelve, each taking three months. That’s an incredibly slow taper, but it’s this way so that any possible changes in my mood and/or behavior can be observed over time.

If we were having coffee, I would tell you that I’ve been busy crafting this past week. Someone from a neighboring care home has her birthday next week and a fellow resident from my care home has his birthday on the 25th. I asked the woman who has her birthday next week what her favorite color is and she immediately understood why. “Ah, you know when I have my birthday!” she exclaimed. Of course, I didn’t reveal anything else. I am creating a necklace with all polymer clay beads for her. I did this for someone else, who had her birthday at the end of January, and back then it’d taken me weeks to create all the beads. Now, I was able to do half of them in one day. The other half is a little harder, because that color of clay is more difficult to work with.

For the man who’s having his birthday on the 25th, I bought a canvas, which I painted black this week and am going to decorate with polymer clay cookie cutter shapes once I’ve finished the necklace. I am doing his name and a car. Since the challenge theme for this month in the Dutch polymer clay Facebook group is mixed media, I’m also thinking of including some other technique, but I’m not yet sure what.

If we were having coffee, lastly I’d share that today, my husband went to get his new-to-him car, a Fiat Panda. He’s coming for a visit tomorrow. We originally thought of driving to some town or city in the area, but neither of us can think of an interesting one, so we may just go to Subway to have lunch.

How have you been?

Gratitude List (July 31, 2022) #TToT

Posted on by Astrid

Hi all on this last day of July! Today I’m joining Ten Things of Thankful (#TToT) for a gratitude list. I’m rather late to the party, but better late than never, huh? Here goes.

1. I am grateful for some good phone talks with the care facility’s behavior specialist this week. She gave me some useful advice on how to handle my frustration with respect to my recent care review with her and my nurse practitioner from mental health.

2. I am grateful my nurse practitioner gave the get-go for me to lower my antipsychotic again. Next week, I’ll be starting with the slightly decreased dose.

3. I am grateful for a nice visit from my sister and her family. I am so grateful Janneke, my oldest niece, was really friendly with me. I tried to show her how to make a play-doh unicorn, but she may still be a bit young for that and/or I wasn’t engaging enough.

4. I am grateful I got to hold Wolke, my youngest niece, who is just two-months-old.

5. I am grateful for the belated birthday gifts my sister and her family brought me. I got four sets of cutters and a set of texture sheets to use with my polymer clay.

6. I am grateful for a delicious salami pizza with added olives and red peppers. Yum! We ordered pizza (and fries for Janneke) last Monday when my sister and her family were here.

7. I am grateful for a good visit from my mother-in-law on Friday too. We went out to have lunch, which was delicious.

8. I am grateful for no mosquitoes last night or the night before. This hopefully means my anti-mosquito device, that I’d bought last Friday when in town with my mother-in-law, is working. Either that or none had been in my room at all. I don’t really care which, as long as the critters aren’t bothering me.

9. I am grateful my pasta machine isn’t broken after all. I had experienced it’d crumble several colors of polymer clay. Even after a deep clean session, it still did this, so I thought it must be broken. Thankfully, one of the most knowledgeable people in the Dutch polymer clay Facebook group took a look at a picture I’d taken and said it wasn’t broken. Apparently it’s the clay.

10. I am grateful the new pasta machine I impulsively ordered online when thinking the current one was broken, can be returned. I will probably ask my staff to drive me to the PostNL pick-up point tomorrow. When I have my refund, I’m going to order supplies I really do need from that same store I now ordered the pasta machine from.

What are you grateful for?

#WeekendCoffeeShare (April 24, 2022)

Posted on by Astrid

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?

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?

Benzos As a “Bandaid” for Serious Mental Illness: My Experiences

Posted on by Astrid

Earlier today, Ashley of Mental Health @ Home wrote an interesting article about the role of benzodiazepines in mental health treatment. While benzos can be useful as short-term treatment or PRN medication for panic disorder, generalized anxiety disorder, social anxiety or insomnia, they are often used as a go-to “bandaid” med for all kinds of mental health conditions. And by “bandaid”, I don’t just mean short-term.

The first benzodiazepine I was prescribed, was the sleeping pill temazepam (Restoril) by my GP in 2006. I was suffering with significant insomnia, but really I was suffering with what I now know is a combination of the onset of autistic burnout and my dissociative shell cracking, if that makes sense. I was given ten pills to use over the course of a month at least. I took six weeks to use them up and refused to get a refill even though my staff at the independence training home nagged me about it.

Then, once in the psychiatric hospital a year later, I used a number of different benzos, one after the other, mostly for sleep too. I however also got put on oxazepam (Serax) as a PRN medication for my agitation. Whenever I took it, I’d become hazy, fall asleep for an hour or so and wake up just as agitated as I was before or more so.

At the time though, I was seen as just autistic if that at all. More so, I was seen as a manipulative, challenging pain in the neck of the nursing staff. It hadn’t been come to the surface yet that I was a trauma survivor and, if it had, no-one cared.

Benzos can cause dissociation to worsen in people with dissociative disorders. Indeed, I find that I do become more fuzzy and I really don’t like it. Benzos can also cause people with borderline personality disorder to become more irritable or impulsive. While I personally haven’t noticed I become particularly aggressive on benzos, like I mentioned above, after the first effects wear off, I do notice I become at least as irritable as I was before taking the medication. I used to attribute this to the fact that the reason for my agitation wasn’t solved by my taking a pill.

After all, one thing that Ashley doesn’t cover is the fact that people with severe mental illness who get prescribed benzos as bandaids for agitation, may very well have good reason to be agitated. I found that often the nursing staff in the mental hospital weren’t following my care plan or my crisis prevention plan at all and, when I got irritable as a result, I was quickly directed to take my Serax.

All this took place in 2007 or 2008, before I was diagnosed with DID or PTSD or BPD for that matter. Once diagnosed with these, I still ended up with a prescription for lorazepam (Ativan) though. In fact, I at one point took it at a relatively high dose of 3mg per day for several months. Thankfully, my withdrawal symptoms once quitting cold turkey due to a miscommunication with my psychiatrist, were physical only and I was able to go back on it and taper slowly soon enough.

Currently, I do have a prescription for lorazepam as a tranquilizer for when I have a dental procedure. Now that I am thinking about all the things I read in Ashley’s article, as well as what I’ve been discussing with my psychiatrist recently about my fear of losing control, I’m not even sure I’m going to take the medication when the time comes to have dental work done. Which, I hope, isn’t anytime soon.

#WeekendCoffeeShare (February 6, 2022)

Posted on by Astrid

Hi everyone on this rainy, windy Sunday afternoon. I’m really regretting having started the landing page for #Write28Days rather than just having linked up some archive of the tag or something, as today I’m already a day behind and it looks weird to add posts to my landing page again now. Okay, maybe that’s just my autistic brain acting up. Anyway, this afternoon I’m joining #WeekendCoffeeShare. If I feel so inclined, I’m going to add another post on my #Write28Days topic tonight, but again I won’t promise I will.

I’ve just had my afternoon coffee. I’m supposed to have a serving of fruit with that. Since the supermarket delivered 5kg of pears yesterday, the staff badly wanted me to eat a pear. Thing is, I’m not a fan. Besides, it’s not my problem either the supermarket got the order wrong or my staff mistyped it in the system. They should have been five pears, not 5kg. Anyway, I chose a banana, but if you all would like a pear (or two) with your coffee, tea or soft drink, we’ve got loads! Let’s have a drink and let’s catch up.

If we were having coffee, I’d share some more details than I did yesterday about my psychiatrist’s appointment on Tuesday. First, we decided to decrease my topiramate (Topamax) dose again to 25mg morning and 25mg evening, because the other 25mg I was taking in the evening was only giving me side effects and no positive effects. We also discussed my fear of letting go of my sense of control particularly in the evening and at night when getting ready for sleep. This means that traditional anti-anxiety medications or sleeping pills are pretty much out of the question for me, since they’d cause me to get drowsy and hence by definition lose a bit of control. Then, I’d fight the effect of those pills and get even more anxious. The psychiatrist instead prescribed me pregabalin (Lyrica). This, like topiramate, is originally an anticonvulsant, but it also works for anxiety. I would be starting with one 75mg tablet on Saturday early evening (around 5PM, when we have dinner here).

The psychiatrist also recommended that my nurse practitioner talk to the mental health agency’s psychologist to see if she can offer me ideas for coping with the anxiety. My nurse practitioner is also going to discuss this with my care facility’s behavior specialist.

If we were having coffee, I’d tell you that, indeed, I started on my decreased topiramate dosage on Tuesday right away. I slept great my first night and originally thought maybe this was the solution after all. It wasn’t to be though, as the next day I was right back to being sleepless and anxious.

Then yesterday I was anxiously awaiting starting my pregabalin at 5PM only to find out first that the staff thought it was put in the med system for 8PM. Then, once they took a closer look, they found out the pharmacy had put it in there for 8AM and the morning staff had indeed given it to me. I’d apparently taken it without noticing. No side effects so far, but this really is quite stupid, as there’s a reason I should be taking it early in the evening. I E-mailed my nurse practitioner, who will hopefully get back to me tomorrow. By the way, I also noticed I got a capsule rather than a tablet. The dosage is right, thankfully.

If we were having coffee, I would share that, yesterday, I decided to order soft pastels to use with my polymer clay. They should be getting here any moment, as thanks to my Select membership with Bol.com, I can have stuff delivered for free any day of the week.

If we were having coffee, I’d tell you that I asked about sealing my polymer clay creations if I’d used acrylic paint or soft pastels on them. I particularly commented that I don’t want to use resin for this, as it’s rather risky with the UV or fumes of the two-component epoxy. Thankfully, I was reassured that sealing isn’t really necessary and, if it is, I can use other products than resin, such as floorboard protector or liquid clay.

If we were having coffee, lastly I’d share that, due to the high winds, my husband didn’t visit today. He didn’t want to risk driving on the highway in his small Daihatsu Cuore, particularly near Lobith, where they’d issued a weather warning. Better luck next week!

How have you been?