#WeekendCoffeeShare (January 30, 2022)

Posted on by Astrid

Hi everyone. I’m extremely late joining in with #WeekendCoffeeShare this week. I already had all my coffee for the weekend, in fact, so the title of my blog post is rather off, but oh well. The linky’s still open for another nine hours, so I’m going to take advantage of it and participate. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing that the weather is slightly better than it was last week. It’s warmed up a bit, at least. That being said, we’re supposed to get rain all of next week, so I’m probably still not going out much.

If we were having coffee, I’d tell you that today is my father-in-law’s 65th birthday. Retirement age is now 67 here I believe, so it’s not significant in that sense. At least, my father-in-law is keeping his dentistry practice until he’s 67. My husband did buy him a beer and I sent him a text, but that’s as far as birthday celebrations go, I think.

If we were having coffee, I’d share that I’ve been creating some quite interesting polymer clay things lately. One is a flower fairy, another a kawaii pig pendant and another a daisy. That daisy didn’t turn out as good as I’d like, but my husband did say he liked the fairy. I haven’t baked any of the things yet.

If we were having coffee, I’d use the rest of my post to whine about how my anxiety is still through the roof. I hardly slept at all Friday night. Then yesterday, I had an okay day until in the evening a fellow client started screeching. I tried to get the staff’s attention but they wouldn’t react until I grabbed the other client by the arm, then only told me that said client, who is non-speaking, couldn’t help her behavior. I’ve been feeling extremely unsettled and unsafe in my current care home ever since. I am all the more triggered because staff keep repeating that I’ll likely feel unsafe in any other place. They probably say it to mean every other place has its drawbacks too, but I take it to mean that my anxiety is my problem and I’m the one who needs to change so I just need to suck it up and stop complaining.

I’ve also been thinking about how I had fewer crises when living with my husband than now that I live in the care facility. Isn’t this telling? I mean, doesn’t this mean that I should get a kick in the butt and go back to living semi-independently? Granted, I had far fewer moments of joy too, but I’m not sure that matters if I was less dependent back then. Isn’t the goal independence, after all? Eek, that scares me, and that in turn should be quite telling, right? I’m probably just one giant mess of a dependent, manipulative, attention-seeking monster.

Okay, if we were having coffee, I’d end on a positive note and say I had a delicious tuna wrap today when going to the Subway drive-through for lunch with my husband. I also had one half of a Bueno candy bar, as my husband had bought it at the supermarket. I originally wanted to refuse as it isn’t on my food plan, but the dietitian had said exceptions are okay.

How have you been?

Share Four Somethings (January 2022)

Posted on by Astrid

Hi everyone. Can you believe it’s almost the end of January already? I can’t wait for this month to be over with, honestly. February can be depressing too, but not as depressing as January. At least then the weather may start to warm up a little. Let’s hope! Anyway, today I’m joining Share Four Somethings. I think I joined this link-up once before, but am hoping to make it a regular habit now that it’s a new format. Here goes.

Something Loved

Essential oils. Yay, my three new oils arrived today! Though I haven’t tried them out yet, I will certainly be doing so soon. One, lemon, isn’t really new, but I’d had to throw out the old bottle because it’d gone past its shelf life. This really should be a motivator to use my essential oils more often. The other two, spearmint and sweet marjoram, I haven’t used before.

Something Gleaned

Honestly, I had to Google the definition of “glean”, so I could say I gleaned the meaning of the word. I guess my English isn’t as good as I’d like to say it is.

Seriously though, I have been reading the Bible everyday since January 1. While 24 days isn’t my longest streak ever by far, I do find that the more I study God’s Word, the more I learn. My most recent realization came from the story about the Bible passage I mentioned yesterday. The pastor sharing the story about the passage said that “favor” in Psalms 30:5 could also be translated as “grace”. This, until then, I’d always seen as a decidedly New Testamental term. Then again, I now am beginning to see that the Bible isn’t really strictly divided between OT and NT, but it’s all one story leading to Jesus. To those of my readers who’ve been believers for longer than I have been, this may seem obvious. To me, it’s a big eye-opener.

Something Braved

Well, as regular readers of my blog will know, this month was quite hard. I’ve been dealing with a lot of anxiety and PTSD symptoms. Even though one of my medications, topiramate, which specifically works to combat trauma-related symptoms, was upped earlier this month, I’m not yet noticing the change. On the contrary, in fact, it looks like I’m doing a little worse. That is, I might be noticing a slight positive change over the past few days, but it’s so early on that it’s hard to know for sure and I’m not sure whether the change is positive compared to how I did on my old dosage too. I thankfully will have an extra appointment with my nurse practitioner on Thursday to discuss how things are going.

Something Achieved

Two somethings here, is that okay? First, I have been writing more frequently and more widely than I did before. I am really proud of myself for this, as it is actually one of only a few ways in which I’m still staying active lately. Due to my anxiety, after all, I’m struggling to try new things such as crafting or even to go for a walk. However, I do try out new writing techniques and that’s something at least.

The other achievement is my diet. I started on a healthier eating plan with the help of a dietitian early in the month. Not with the aim of losing weight, although it would be great if I could lose the 1.5kg I need to lose to no longer be obese. My main goal is to experience less inner conflict about eating, as I have a history of eating disorder symptoms. So far, I’m sticking to it pretty well. More importantly, the one day when I couldn’t fully stick to the plan, because we had Chinese takeout, I didn’t resort to eating disorder behaviors. That’s quite an accomplishment!

Poem: Locked Up Inside

Posted on by Astrid

In my bubble
I sit
Staring out
At the world
Outside

From around me
I hear
People talking
To me
But I can’t respond

Through the invisible wall
I try
To reach out
To someone
But I can’t

A tight grip
Of panic
envelops me
Because I know
I’m locked up inside

I have had the concept of being “locked up inside” in my head for a few days now. I first came across the phrase in an E-mail support group for parents of children with selective mutism, a disorder in which a child is unable to speak in certain situations due to intense social anxiety. I have never had this diagnosis, but as a teen and young adult, did experience periods of mutism due to anxiety and dissociative freeze responses. I use the term “locked up inside” for a feeling of intense anxiety which causes a freeze response that leads to an inability to speak and sometimes move. The feeling of being “locked up inside” is particularly frequent and intense lately.

I am linking this poem to dVerse’s Open Link Night.

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.

Moaning About My Meds

Posted on by Astrid

It’s 8:30PM and I’m probably going to bed before 10PM tonight. Since upping my topiramate (Topamax) a week ago, I’ve been more sleepy earlier at night and consequently going to bed sometimes by as early as 9PM or even earlier. Unfortunately, the quality of my sleep doesn’t seem to be better.

Last night, I had a horrible dream in which my staff were chattering among themselves and all the while I was trying to get their attention because I was anxious, but to no avail. That’s how I’ve been feeling ever since upping my medication: I am still anxious, but too drowsy to react to it. In fact, I’m not even 100% sure my experience last night was completely in my dreams, because, when I awoke, I couldn’t get to the level of alertness necessary to press the call button.

I don’t really mind the drowsiness as much. Or the tingling in my fingers and toes, which I’ve started to experience since increasing my topiramate dosage too. But the medication does have to work for my hypervigilance. And hypervigilance is not just an outer reactivity, or is it?

My assigned home staff did say yesterday that she judges from the staff’s reporting that I’m calmer, because I come calling out for help less at the times I’m not having my one-on-one. That comment triggered me intensely, because it made me think I’m supposed to take my topiramate so that I don’t ask for help outside of my assigned support hours. I’m reminded of my psychiatrist’s comment about meds as a “chemical nurse” again, something I now don’t see as quite as validating a statement.

This evening, I did E-mail my nurse practitioner my concerns. Of course, the topiramate’s positive effects might still need time to kick in, but if they don’t, I’d rather go back to my old dose. Which, of course, means we will need to find me a different PRN medication or something for when I go into crisis. It also means we’ll need to postpone my aripiprazole (Abilify) taper. Honestly though, I don’t really care about those.

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.

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Posted on by Astrid

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

My Worst Fear

Posted on by Astrid

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

#WeekendCoffeeShare (June 20, 2021)

Posted on by Astrid

Hi everyone on this sunny and comfortably warm Sunday. I didn’t join in with #WeekendCoffeeShare last week again. In fact, I haven’t been motivated to write much at all over the past week or so. Today though, I’m trying to get out of my rut and join the Coffee Share community again. I just had my afternoon coffee and will probably take a soft drink break midway through this post. If you’d like a drink, feel free to get one and let’s catch up.

If we were having coffee, I’d share that the weather over the past week has been beautiful. It was even a little too hot for my liking on Wednesday and Thursday and the nights were uncomfortably sweaty. However, I’m liking this much more than the rain we had over the month of May. We did get some thunderstorms during the night though, which scare me.

If we were having coffee, I’d share that I went to the doctor with my lower abdominal pain that I’ve had for about a week now. I wrote about this on Tuesday, but hadn’t been to the doctor at that point. I went on Thursday and, even though the urine sample I’d sent off for checking, didn’t show an obvious UTI, I did get antibiotics just in case while the sample is being further cultured. The doctor explained that it’s unlikely I’ll develop resistant bacteria, as I hardly ever take antibiotics. I am also to take paracetamol for the pain.

If we were having coffee, I would tell you that I’ve been in a bit of a crisis over the last few days. On Thursday, while I was still in quite a bit pain, my care facility’s manager came by to inform me that I cannot get more support than I get now. I realize it may seem silly to get into a crisis over this, but I’ve been struggling with major anxiety lately and was really hoping that more support could help me.

With respect to the anxiety, my husband tried to be supportive, but I ended up being triggered by some of his words. Like, he said he thinks I might have dependent personality disorder. This was the exact diagnosis I got in the psych hospital in 2016 and which was used as an excuse to kick me out. I don’t want to be kicked out of long-term care. I guess that proves I’m just being dependent though, as like I’ve mentioned before, I wasn’t dying living with my husband.

My husband tries to encourage me to do more things independently. While really I would like to be able to, the activities he mentioned (showering, for example) give me a ton of overload even now that my staff help me. Then again, who knows this isn’t just anxiety and dependency either? Apparently I’m not able, in my screwed mind, to make that judgment myself.

If we were having coffee, I’d share that I’m almost certainly going to start taking the topiramate in early July. I started the depo-Provera injectible birth control last Thursday and I will be able to start the topiramate once I’ve been on this one for two weeks. Now I’m only hoping the antibiotic won’t mess things up again.

If we were having coffee, lastly I would share that today, my one-on-one staff took me to visit her family’s horses. I loved petting the horses. One of them kept reaching for my lower abdomen. The family member whose horses these were, explained that she goes for the person’s body part with the most tension. I guess she’s right.

How have you been?

When I Can’t Sleep

Posted on by Astrid

Today, Sadje asks in her Sunday Poser what we do when we can’t go to sleep. Now I must say I only occasionally suffer with insomnia nowadays. As a child, teen and young adult, I’d suffer with it a lot more often. When in the psych hospital, I even tried a handful of different sleep medications until they all stopped working and I just accepted lack of sleep. The one sleep medication I remember that actually worked for a relatively long while if I didn’t use it more than twice a week or so, was zolpidem. I liked that one best, but I actually still have a kind of psychological longing for the floaty feeling it gave me.

Anyway, now that I only occasionally suffer with insomnia, I usually still don’t like to just lie there and do nothing. The nice, floaty feeling on zolpidem would’ve helped with that at least. Rather, I usually get up and do some reading on my phone. Of course, I know that electronics are supposed to keep you awake and this may be the case for me even without the blue light (being that I keep my screen completely black). Indeed, I don’t usually find that reading helps me fall asleep, but at least it helps me pass the time until I’m naturally tired enough to fall asleep. Or until it’s morning.

I wanted to go off on a tangent here and talk about other sleep issues too. The most annoying of these is finding myself in a half-sleeping, dreamlike state where my mind seems to want to do things but my body won’t. This experience, which some people I know have said might be sleep paralysis, is extremely frightening. It usually happens when I take a nap, which is why I avoid taking naps if I’ve had this experience recently.

Which gets me to fear of sleep due to nightmares. I experience nightmares that actually affect my daytime functioning at least a few times a week. I don’t always remember my nightmares exactly and I’m not even sure those I do remember count as nightmares, as sometimes when I’m in them they aren’t fear-inducing. They however do trigger my PTSD flashbacks, if that makes sense. They usually are very vivid. I have had this issue more since starting on my antipsychotic, but now that I think of it, it’s probably more of an anxiety or PTSD symptom. I am really hoping the topiramate, which I’ll hopefully be starting within the next week or two, will help with this.