Gratitude List (December 3, 2022) #TToT

Posted on by Astrid

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?

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?

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.

Gratitude List (March 25, 2022) #TToT

Posted on by Astrid

It’s the last weekend of March. I didn’t realize it until I read it in this week’s Ten Things of Thankful. Yay, I’m joining in again with a gratitude post! Here goes.

1. I am grateful for daylight until nearly 7PM in the evening. Make that 8PM come this Sunday, as we’re entering daylight saving time. Yay!

2. I am grateful for a field of daisies near the day center. I am grateful I was able to take a few photos of them and I didn’t fall over when sitting on my knees to snap the pics.

Daisy

3. I am grateful I didn’t lose interest in polymer clay altogether. I made a unicorn again today and thoroughly enjoyed it. I also worked on another, larger polymer clay project yesterday.

4. I am grateful the weather permitted me to go outside without a jacket on several days this week.

5. I am grateful for a delicious microwave omelette on Wednesday. I didn’t use cooking oil or butter to microwave the egg, so according to the dietitian, it’s as healthy as a boild egg. I also added chopped onion and bell pepper.

Microwave Omelette

6. I am grateful for birdsong. I got awoken by a bird at 6AM several mornings this week. Though I wasn’t particularly thrilled about that, I do appreciate the sound of birds singing in general.

7. I am grateful it was pay day on Wednesday. I had a whole list of things I wanted to buy in my mind that I had told myself to wait for until pay day at least. So far, I’ve only ordered one thing off the list and that’s something I’ll need for a staff’s birthday next week. Sadly, I haven’t received it yet and have no way of tracking it down.

8. I am grateful I was able to get through a few intense days full of emotional, visual and bodily flashbacks thanks to the support of some trusted staff. I am grateful these few staff are still there and, though no-one can predict the future, they don’t intend on leaving.

9. I am grateful for my PRN quetiapine. It helped me calm down on Tuesday, when I was having a particularly rough evening.

10. I am grateful for my journaling app, Day One. I picked it up again and finally figured out how to use tags properly in it. I also transferred a template from Diarium, the other journaling app I’d been using. One of the good points of Diarium is that it has its templates available in other languages than English, but other than that, I think I prefer Day One after all. I am really hoping I can make journaling a habit again.

What have you been grateful for?

Most Relaxed When I Am Slightly Distressed?

Posted on by Astrid

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

A Productive Appointment With My Psychiatrist

Posted on by Astrid

I had an appointment with my psychiatrist today. Last week, I had already raised some issues relating to my medication with my nurse practitioner and asked to see the psychiatrist about them.

Among other things, I finally dared to ask for them to consider lowering my aripiprazole (Abilify) dose. I have been on this antipsychotic for nearly twelve years and on my current dose of 30mg, which is the max dose, for about five or six of those years. I have had the wish to lower my dosage for years, but was always asked to wait for a while to stabilize. Now that my one-on-one has been approved for the coming two years and I’m relatively stable, I thought further waiting would be senseless.

My psychiatrist today proposed to lower my dosage in steps of 5mg each, while remaining on a new dosage for three months. She claims that the first two weeks, I won’t see any effects of the lowering of my dosage so any change in behavior doesn’t count as a sign that my dose needs to be upped again. When I wrote in a Facebook group about my lowering my aripiprazole, I was met with surprise at the slow taper. Indeed, I’m not sure where my psychiatrist got the idea from that the first two weeks don’t count, since aripiprazole has a half-life of about 72 hours, not two weeks. However, since I don’t suffer with any major side effects, I don’t see why the slow taper would be bad.

My psychiatrist said that we won’t have a goal dosage in mind, so we’ll keep tapering until it’s no longer the right thing. Yes, even if this means I can do without aripiprazole altogether eventually. I was a little shocked when she mentioned the possibility that I might not need my aripiprazole at all at one point. Of course, given the slow taper, this will take like 18 months or so, but I don’t mind.

I won’t start my taper until next month, because first we decided to increase my topiramate (Topamax) by yet another 25mg in the evening. Then I’ll be taking 50mg in the evening and 25mg in the morning. This is still a pretty low dosage even for trauma-related symptoms. It is hoped that, by doing this, we’ll help reduce my night-time anxiety even more and I won’t need my PRN quetiapine (Seroquel) anymore. After all, that wasn’t helping with my anxiety really. I originally got my quetiapine when I was still experiencing a lot of overload-related irritability. Now it’s more anxiety and PTSD that’s causing me to feel strong distress, so topiramate may be a better fit. Of course, topiramate is a daily medication, but if it can prevent me experiencing significant distress, I’m willing to try it.

I do feel a little weird, in that I was always taught that medication isn’t a substitute for coping skills or support and at the same time that it’s either one or the other. I mean, even Dutch care funding regulations at least used to say that if someone was medicated for something, they no longer qualified for support in this particular area. My psychiatrist today called medication a “chemical nurse”, in that a nurse’s role is to help calm you down when in crisis and that’s what meds do too. Now that I have the best human support I can get, I think it’s time to figure out the best medication I can get too.

Lastly, we discussed my getting medication specifically in prep for dental treatment. I explained that, after getting seven cavities filled without anesthetic many years ago, I have pretty bad anxiety but it shows itself in freezing. We decided I could take lorazepam (Ativan) 2.5mg the morning before the procedure and then when leaving (the surgery is about a 45-minute drive away), I could take another 1mg. The psychiatrist said I could skip the 1mg if I was feeling really drowsy, but my staff said the dentist can deal with me even if I am.

Overall, I’m pretty satisfied with the results of this appointment. My nurse practitioner should have sent the prescription for the increased topiramate to the pharmacy and that should be filled next week.

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?

Gratitude List (October 8, 2021) #TToT

Posted on by Astrid

Hi everyone. I’m still struggling quite a bit, but I’m determined that, if I don’t write to the 31 prompts for the 31-day writing challenge, I’ll at least write a blog post everyday. To cheer myself up, today I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for pizza. Yes, again. Last Sunday, like I mentioned in my #WeekendCoffeeShare post, we ordered food from the local Italian restaurant. I ordered a tuna pizza and it was delicious!

2. I am grateful for my staff. As I mentioned several times over the past week, my assigned home staff is on sick leave. Thankfully though, I still do have other staff. I struggle to trust them, but am trying.

3. I am grateful for new essential oil inspiration. Last Monday, I signed up to the Using Essential Oils Safely VIP club for one month. It’s too expensive for me to remain a member longer, but I’m learning all I can while I have the membership. I did put a few new essential oils on my wishlist to buy someday.

4. I am grateful for my bed’s adjustable headrest and legrest. That way, I am able to lie in bed much more comfortably.

5. I am grateful for quetiapine (Seroquel). This is my PRN medication. I’ve needed it quite a few times over the past week and am happy it helps at least a little.

6. I am grateful for the support from my community psychiatric nurse and nurse practitioner. I had a regular appt with my CPN on Wednesday and told her how much I was struggling. She offered to ask my nurse practitioner to call me on Thursday and I reluctantly accepted the offer. He did call and we agreed to discuss possibly upping my topiramate (Topamax), which I take for PTSD symptoms, on Monday.

7. I am grateful for my husband. He is very able to put things into perspective.

8. I am grateful for St. Nicholas candy. The holiday isn’t till December 5, but the candy has been in stores since mid-August and my staff ordered it earlier this week. (Thankfully my fellow clients don’t have the awareness of time to get confused by this, as people of higher intellectual level might.) I had a large handful (well, a small bowlful) of candies this evening.

9. I am grateful I am still able to blog everyday in spite of my distress. I am also so grateful for all the engagement on my blog, particularly on my posts about the mental hospital. Thanks a bunch everyone for your support!

Well, okay, nine things of thankful this time, but it’s alright. What are you grateful for?

#WeekendCoffeeShare (May 15, 2021)

Posted on by Astrid

Hi everyone on this partly cloudy but thankfully not too rainy Saturday! Today I’m once again joining in with #WeekendCoffeeShare. I just had my afternoon coffee for today, but there’s probably still some left. Or you can grab a cup of tea or a soft drink. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been rather eventful. It started out with my psychiatrist’s appointment on Monday. Like I said, I was overcome with disbelief at how seriously the psychiatrist and my nurse practitioner took me.

Over the entire week, I’ve had a lot of emotional and visual flashbacks related to my trauma. I’ve also experienced some form of near-psychotic-like symptoms where I confused the past with the present. My inner life feels like a rollercoaster ride of dissociation, anxiety, paranoia and more. I really hope that I can start the topiramate soon and that it will help. I did try to take my PRN quetiapine a few times, but it hardly really helped.

If we were having coffee, I would tell you that my mother-in-law visited me on Tuesday. We went for an hour’s long walk and got fried fish at the marketplace near my neighborhood supermarket on the way back. Unfortunately, it started to rain just when we’d finished our fish, before we were back to the care facility. Thankfully, the rain wasn’t too heavy.

If we were having coffee, I would tell you that, despite not meeting my step goal of 10K for several days so far, I’m still on track for this week. The reason is the fact that, early in the week, I surpassed my goal. I even got in 17K steps on Wednesday.

If we were having coffee, I would tell you that my sister had her birthday on Thursday. I sent her a present (a book) already last week, but she wouldn’t open it till her actual birthday. My mother posted a picture on my sister’s FB of the card she’d sent announcing my sister’s birth. It showed me as a toddler and my sister as a newborn. My sister commented with a recent picture of my niece in which she looks just like me in the card, saying that toddler (leaving it to interpretation whether she meant me or my niece) is more beautiful.

If we were having coffee, I’d tell you that I’m seriously considering buying Apple Airpods Pro. I really want in-ear earplugs so that I can listen to soundscapes or soothing music when going to sleep. I also badly want them to have noise-canceling functionality.

Unfortunately though, I haven’t had the announcement from the benefits authority of my getting my annual vacation allowance, which should be in my bank account later this month. I had originally planned to buy the Airpods (and maybe an Apple Watch too) for that money. However, with the Braille display expense scare last week, I’m a little more careful now.

If we were having coffee, I’d share about the online magazine on cerebral palsy I found out about earlier this week. CP Netherlands created it and it’s lovely. I read in it, among other things, about a radio news reader who has CP.

If we were having coffee, lastly I’d tell you that my AFO broke sometime today. I have no idea how it happened, but my staff saw it when I wanted to put it on this afternoon. Ugh, I hate it when my adaptive equipment breaks down.

How have you been?

An Unbelievably Good Psychiatrist’s Appt Yesterday

Posted on by Astrid

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.