My Medication Musings: Celexa

Posted on by Astrid

Like I said last week when participating in Working On Us, I wanted to write a series of posts on the medications I’ve been on. I won’t promise this will be anything like a regular feature. However, today I saw that Medication Monday over at The Dark Tales Project is about a medication I currently take: Celexa. I already wrote several posts on this medication in the past, so may be repeating myself. Let me share though.

I was first prescribed Celexa in September of 2010. At the time, I had just finished a book whose title translates to Prozac Monologues, which was about the positives and mostly negatives of antidepressants. I didn’t really care. One comment I remember, by one of the pro-Prozac people, was that she’d become nicer on antidepressants. That comment was on my mind when my psychiatrist suggested Celexa and boy did I hope it’d do this for me. I was a definite bitch! The saying that depression makes you feel as though you’re not okay and neither is anyone else, definitely related to me.

The thing is though, I wasn’t sure I was depressed. No proper assessment of my mental state preceded my being prescribed Celexa. Yes, I was irritable and no amount of tranquilizers or antipsychotics could help that. But is that depression? Would Celexa help?

As it turned out, it helped a little with that. I felt a little calmer, a little nicer on the medication. I never asked my husband to comment on the level of my irritability and can’t remember for sure whether he ever made any positive comment on it. If at all, that must’ve been in 2018, when my dosage got increased.

I actually wasn’t diagnosed with depression till 2017. At the time, my irritability was one symptom that prompted the psychologist to diagnose me with major depression. I’m pretty sure I have persistent depressive disorder (formerly known as dysthymia) too though, but I don’t think I’m currently even diagnosed with any mood disorder at all.

It took another year before my Celexa dosage finally got increased to first 30mg and then my current dosage of 40mg.

I was very irritable at the time of seeking my psychiatrist’s help with my depression. I was also most definitely depressed, in that I didn’t have much energy or motivation for anything. As is known for Celexa and other SSRIs, the medication caused my energy to go up first before actually helping with my mood. My mood however did eventually lift. I am pretty sure that, had it not been for Celexa, I would’ve sank deep into depression during the long process of applying for long-term care.

But the story isn’t all positive. Aside from the side effects, Celexa (and Abilify) took only the edge off of my irritability. I’m in fact noticing it getting worse again. I’m not exactly sad, but I’m most definitely pretty negativistic lately. I’m not sure why. I mean, maybe it’s something to do with the lack of an over-the-moon sense of relief at going into long-term care. Or maybe it’s the other way around and my negativistic state prevented that. I’m not sure.

Working On Us Prompt: Psychiatric Medication

Posted on by Astrid

I’ve been thinking of doing some posts on the medications I’ve been prescribed so far, but didn’t get down to it till now. Today, Beckie’s topic for Working On Us is psychiatric medication. Beckie asks a few interesting questions I didn’t think of.

First, she asks whether, when you were first diagnosed with a mental illness/disorder, it took you a while to get used to the medication prescribed. Well, my first diagnosis from a psychiatrist was autism, for which there are no specific medications. It took four months after that diagnosis before I first got put on a daily psychiatric medication. That was Risperdal (risperidone). I didn’t like it at all, even though it took only a few days to kick in.

I remained on Risperdal for 2 1/2 months, and then took myself off. I felt that the medication was merely used to keep me just contained enough that I didn’t qualify for more care. Well, it is my firm belief that medication is not a substitute for proper care.

Going off Risperdal was a mixed bag. I felt okay the first few weeks, but three weeks after having stopped taking the medication altogether, I spiraled into crisis.

After taking myself off of the Risperdal, I was without daily medication for nearly 2 1/2 years. I was in a psych hospital, so I can tell you right away that the crisis service nurse was wrong to say hospitalization would mean being put straight back on meds. Apparently my psychiatrist agreed medication is no substitute for proper care. That was until, despite mostly adequate care, my irritability got so bad I just needed something. I was put on Abilify (aripiprazole) and remain on that ever since.

Beckie also asks about withdrawal. I have been on the same antipsychotic and antidepressant ever since 2010 and never lowered my dosage yet. However, I did for a while take Ativan (lorazepam) at a relatively high daily dosage. Then when I wanted to quit, my psychiatrist said he’d prescribe it as a PRN med. Well, I didn’t need it for the first few days, so I didn’t take it. That was until I started experiencing tremors a few days into withdrawal. I am lucky I got only those and didn’t get seizures or the like. Thankfully, I got put back on lorazepam and tapered safely.

Beckie’s last question is whether you work closely with your doctor in managing your meds. Well, I just had a meeting with the intellectual disability physician for my facility last Monday. She is making sure I get my medications and will also order yearly bloodwork to check for metabolic issues etc. I haven’t seen a psychiatrist with my new mental health team yet, but will soon enough. I want to eventually try to lower my Abilify dose. The intellectual disability physician advised me to wait at least six months to get used to living here though.

#WeekendCoffeeShare (November 10, 2019)

Posted on by Astrid

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

Gratitude List (November 9, 2019) #TToT

Posted on by Astrid

Oh my, it’s been forever since I participated in Ten Things of Thankful. I think I participated once since moving to the care facility. The thing is, I have a ton of ideas for blog posts on my mind but only so much time to complete them. I mean, maybe a gratitude list should be one of the easier ones on my list, but oh well. I don’t know. I don’t want to make up excuses, so here’s my gratitude list.

1. Eating out with my husband and sisters-in-law. The sisters-in-law had offered it to us as a present for us having bought a house. We went to an all-you-can-eat restaurant. My husband thought he wouldn’t particularly like the food, but he did and I loved it. As those who know me well will admit, gluttony is my main deadly sin, LOL.

2. Great reading. I don’t nearly spend as much time reading as I’d like, but I do love the books I’m currently reading.

3. An increase in mental clarity and energy. I’ve been doing better in the brain fog department lately. In fact, I can usually manage to be quite active either physically or mentally most of the time during the day.

4. The sensory room at day activities, including its music player. It is connected to the waterbed, so that the music almost surrounds you when you’re lying on the waterbed.

5. A nice behavior specialist. On Tuesday, I had my review at the care facility. It went okay, but after it, I did experience some trust issues particularly with my day activities staff. She called out for the behavior specialist to talk to me some more and the issue got mostly resolved.

6. Sunshine. Of course, it’s fall here, so we don’t experience the great weather of summer, but we did get some relatively sunny days. It was nice being out in this weather.

7. My former psychiatric nurse practitioner calling me to check in. He also finally sent me the form he’d sent to the assertive community treatment team in my town, since I hadn’t read it yet. It was good to talk to him for a bit.

8. A good intake interview with the nurse practitioner and social worker from the new team. I was able to explain myselves quite well. My current diagnosis apparently is unspecified personality disorder with dissociation along with autism spectrum disorder, but I was able to go into some detail about the extent of the dissociation. It was good also to have a staff from the facility with me. This team is more concerned with one’s individual needs for support than with one’s diagnosis.

9. Walking. When I first came to this facility, I didn’t expect to get out and about much, but I usually do manage at least 30 minutes a day even now that fall has truly set in. I tried to reconnect my Fitbit when I found its charger earlier this week, but the app seems to have locked me out. I don’t really care though.

10. Sleeping with music on. On Thursday, I was so tired from the intake interview at mental health that I slept most of the evening away. I slept with a lovely playlist on Spotify playing on my phone. I am still considering getting myself a music pillow.

11. My husband. He’s so nice! It’s hard not seeing him as much as I used to, but he showers me with love each time we do see each other.

What have you been grateful for?

Nuts! #SoCS

Posted on by Astrid

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

Working On Us Prompt: ADHD

Posted on by Astrid

It is Wednesday and that means Beckie has launched another topic in the Working On Us Series. I badly wanted to participate last week, when the topic was (complex) PTSD. However, I felt too low on energy then. This week, the topic is ADHD.

I was never diagnosed with ADHD, so in this sense I have little to add here. I, however, do experience many symptoms that could be signs of particularly inattentive-type ADHD. They overlap a lot with autistic symptoms though, which I do have a diagnosis of. At this point, I don’t think it’s necessary for me to get an official ADHD assessment. Most groups for adult ADHD/ADD welcome self-diagnosed individuals and those who are questioning, like me.

Symptoms I relate to include restlessness, both physically and mentally. I’m not necessarily hyperactive in that I blurt out random things, but I do fidget like all the time and my mind is usually racing. That is, it is either racing or completely shut off, like when I’m low on energy.

The same really goes for impulsiveness: I’m not impulsive in the typical way, but I am in less typical ways. For example, every need feels urgent to me. This applies to basic human needs like eating – when I feel hungry, it feels as though I’m literally starving -, but also to other wants and needs. This could be related to autistic sensory processing issues, but I believe it’s more than this, especially since it doesn’t just apply to sensory or bodily needs.

As for inattentiveness, I can’t usually pay attention to something unless it really interests me, in which case I hyperfocus and become totally absorbed to the exclusion of other activities. I know this is an ADHD trait, but it is also common in autistics and I’ve always wondered whether everyone doesn’t have this issue to an extent.

Lastly, my executive functions seem to suck. My memory for random words or digits is about average and used to be above-average, but for everyday life experiences (particularly others’ experiences) and daily tasks, it’s pretty bad. I was told when I did a behavioral memory test (where you have to retell a short newspaper story) as part of my autism assessment, that my memory is detail-oriented.

With respect to planning and organizing tasks, I suck at those and always have. I used to do pretty well when faced with a deadline, but even then I struggled to organize tasks. I recently read that ADHD children often learn to do tasks on high adrenaline. The reason is often that neurotypical adults assume that, if a child is capable of something relatively difficult once, they must be able to do it all the time and must be able to do all assumed-to-be-easier tasks in that category. For this reason, neurotypical adults often force ADHD children into doing tasks they cannot yet do, assuming they can, and as such cause the child high anxiety. This causes an adrenaline rush, which temporarily increases the child’s ability to perform.

When I read this conversation on Facebook (it was originally posted to Tumblr but I don’t know where), so many bells rang in my head. Like many people referred to in this conversation, I can sometimes do seemingly more complex tasks while not being able to do simpler tasks in that same category. I am also very inconsistent in my abilities, usually being able to perform a task under pressure better, but with less pleasure. For clarity’s sake, this conversation was meant to explain the harmful effects of forcing children to do tasks they feel they are not capable of.

Since I do not have an ADHD diagnosis, I’ve not had any treatment specific to it. I’m also not on ADHD medication. I, however, find that some coping strategies that work for ADHD individuals, do work for me.

Working On Us Prompt: Sleep Disorders

Posted on by Astrid

The past few days have been pretty busy, so even though I did want to blog, I hardly found the time. Now it’s already latish evening too.

Today I’m once again joining in with Working On Us, for which the prompt this week is sleep, insomnia and other sleep disorders.

As a child and teen, I suffered from insomnia a lot. I would often be awake for the whole night or hardly sleep at all. On week-ends, I sometimes made up for it by sleeping in, but I was definitely chronically sleep deprived. Though my parents sometimes suggested, and I don’t know whether they were joking, that I take valerian or melatonin, I wanted nothing of it. In fact, when I was going in for eye surgery at age seven or eight, I refused the tranquilizer they offered us before the operation. I also constantly fought the anesthesia.

When I was 20, I sought treatment for my insomnia for the first time. My GP prescribed temazepam, the most commonly-used sleep medication here in the Netherlands at least at the time. I was very scared when first using it, being that I’d not taken any medication in years, not even paracetamol.

I think that what lay underneath both my insomnia and my refusal to take medication for it, was an intense fear of losing control. I was, after all, pretty compulsive particularly as an older child and teen.

My sleep issues escalated in 2007, when I lived on my own in Nijmegen. Though I didn’t sleep less than I had as a younger person, I did suffer from the effects of sleep deprivation more. When I was admitted to the psychiatric hospital, the first medication I was prescribed was again temazepam. Then followed another few benzos and even levomepromazine (Nozinan), which is normally only used for palliative sedation.

I had to take “twilight anesthesia”, which means high doses of benzos, several more times prior to procedures and chose them over the pain that would otherwise ensue. However, I still had terrible fear when I “awoke”.

Other than insomnia, I’ve had an assortment of other sleep issues. My husband said at one point that I have hypersomnia, because I slept so much. This was probably down to a combination of medication, vitamin and iron deficiencies and lack of structure.

I am a sleep talker and I snore too. The snoring got slightly better as I lost weight last year. I’m not sure whether it’s worsened again since I’ve gained weight back up again. The sleep talking comes and goes with stress.

Lastly, I suffer from vivid dreams and nightmares. They’ve gotten a little better now that the long-term care situation is more or less settled, but during times of stress, I very often awaken in a state of shock because of vivid dreams. That is, I’m not 100% sure they’re REM sleep dreams or night terrors (which happen during stage 4 sleep). I’ve never had a sleep study done either.

Working On Us Prompt: Self-Care and Personal Hygiene

Posted on by Astrid

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

Working On Us Prompt: Pets and Emotional Support Animals for Mental Health

Posted on by Astrid

This week’s Working On Us prompt is all about pets and emotional support animals. There are several questions to answer as a prompt or you can write a narrative. I am going to go with the latter, but also incorporate the questions into my post.

I have never had a formal emotional support animal. I do hope to get a guide dog for the blind somedday that will hopefully be in some ways capable of supporting me emotionally too. I know of several people with guide dogs who feel their dogs serve them a purpose related to their mental health too.

For now, I have a cat. His name is Barry and he’s a six-year-old European shorthair (the “standard” breed for Dutch cats). We adopted him from the animal shelter my mother-in-law and sister-in-law work for in 2014. At the time, we had another cat too named Harry, but Harry was extremely hyperactive. We hoped that a companion for him would help him let out his hyperness in a healthy way. Barry however couldn’t handle it, so eventually we rehomed Harry to my sister-in-law.

I never quite bonded with Harry. I was always worried he’d shove my Braille display or other expensive equipment off my desk if he got the chance. At the time, I still resided in the mental hospital so only got home on week-ends. I really didn’t like Harry to be honest.

With Barry, I initially didn’t bond well either. Barry was very shy and reserved to begin with. I remember clearly when Barry first came to me for a cuddle.

Now that I live with my husband, I am Barry’s main feeder, so he’s taken more to me. As a result, he definitely supports me emotionally. He sometimes lies next to me in bed when I’m sleeping off a depressive state. His care also provides me with some much-needed structure. Barry isn’t an emotional support animal officially, but having him around definitely helps me sometimes.

In my opinion, any animal that can be kept as a pet can be an emotional support animal. So can farm animals. In 2005, I went cow-cuddling with the blindness rehabilitation center. I didn’t like it at the time, because I didn’t see the purpose. Now I would love to go cow-cuddling again.

Similarly, horses are definitely useful as therapy or support animals. As regular readers of my blog know, I go horseback riding at an adaptive riding school once a week. Though it isn’t officially therapeutic, it definitely helps my mood and overall mental health.

I also have experience caring for horses that I didn’t ride. In 2012, I went to a horse stable as part of my day activities. I had a horse there named Flame, a Shetlander, whom I often brushed, went for walks with or just cuddled. Flame could’ve been my emotional support animal.

My Encounters With the Police

Posted on by Astrid

When I wrote my Share Your World post last Monday, I said I would write more about my encounters with the police. Now that I keep switching between a lot of seemingly meaningful activities and not sticking to one long enough to actually be useful, I thought I’d write this post.

My first encounters with the police, in 2000 or 2001, were for the “crime” of being or appearing lost. I would often go to the grocery store on my own to get candy, even though I didn’t really know my way there. That is, I had been taught, but being that I not only am blind but have the worst sense of direction, I couldn’t seem to get it right. So I often got lost and then people would see me wander aimlessly, sometimes crying in frustration, and they’d call the police. My parents thought the police were stupid.

One time, in 2004, the police threatened to arrest me “for support” if I didn’t go in their van with them. This was my worst encounter with the police, because not only was their use of force excessive (they physically pushed me into the van), but I hadn’t actually been lost.

Once I’d moved into independent living in Nijmegen in 2007, I got involved with the police several times for wandering. They’d take me to the police station, sometimes calling my support staff and other times the mental health crisis service. I was deemed “not crazy enough” for the crisis service to even assess me.

I have probably shared the story of my mental crisis in November of 2007 before. In fact, I know I have, maybe just not on this blog. This involved me threatening suicide while riding a bus. The police were called by the driver and took me to the police station. What I may not have shared, is that I got removed from the train station by the police earlier that day, for the reason that I appeared (and was) confused.

Now that I live with my husband, I sometimes fear police involvement when I wander off. However, this village is so tiny there isn’t any police on the streets anywhere.

Overall, my experiences with the police have been okay, other than the time in 2004 I was threatened with arrest and the time I was removed from the train station. The police in my parents’ city had a good amount of information on me on file, which I’m not even sure they’re allowed to anymore due to GDPR. Now, however, many mentally ill people carry a “crisis card” in their purses with basic information about them, their diagnosis, emergency contacts and what first responders should and shouldn’t do. I have yet to get myself such a crisis card. I will when I’m in supported housing.