My Medication Musings: Risperdal

Posted on by Astrid

I started this should-have-been-series a long time ago, but never got beyond the first post. Today I’m not very inspired to write, but I want to write something anyway, so I am deciding to continue with my medication musings. The medication I’m covering today, is the first daily medication I was evver prescribed.

Risperdal, which is now sold under its generic name risperidone, is an atypical antipsychotic. It was approved by the U.S. FDA for use against irritability in autistic children in 2006. I was not a child when I was prescribed Risperdal in 2007, but I was definitely irritable and autistic.

I remember very clearly when I saw a psychiatrist I’d never met before and who may or may not have read up on my psychiatric history on July 25, 2007. She had a strong Flanders accent. My CPN had referred me to her after my staff at the independence training home called her because I had been very irritable of late. Looking back, it’s no wonder, since I was due to move out of the home and into independent living the next week. But my staff were desperate and so was I.

My CPN had suggested a sleeping medicationor tranquilizer, as I was also sleeping very poorly. Not that the psychiatrist agreed, since when I reported how many hours of sleep I got at a later phone consultation, she said that wasn’t worrysome. The psychiatrist listend to my symptoms and suggested Risperdal.

I agreed without much further questioning. That evening, I wrote a blog post saying antipsychotics in autistics are a matter of really well-informed consent. The post was a response to the general consensus at the time among vocal autistics that antipsychotics should never be considered.

Looking back, while I don’t feel that antipsychotics are completely off limits for autistics – I still take one -, I do agree with another notion from said vocal autistics: psychiatric medication is no substitute for proper support. And yet, at the time, there was no convincing my staff that I shouldn’t move into independent living, so I felt I had no other option if I wanted to have somewhat of a life worth living.

And yet, I was scared. When, after two days, I started experiencing palpitations, I was extremely anxious. It happened on a Friday night when my staff were already gone. Don’t ask me how I got through that night. The next morning, I rang the out-of-hours GP, who recommended I stop taking the medication for a few days and consult my psychiatrist on Monday. Said psychiatrist didn’t believe that this could be a Risperdal side effect or I’d have experienced the palpitations right from the start. So back I was on Risperdal.

I was on a low dose of 0.5mg twice a day. My psychiatrist was in the training home’s city, so when I moved the next week, I had no psychiatrist nearby. My GP ended up prescribing my medication. When I complained to both the training home city psychiatrist and my new GP about continuing palpitations, both dismissed me. The psychiatrist even suggested I up my dose. I refused.

Because of the abrupt change in my living situation soon after starting Risperdal, I had no idea whether it was working. I was still experiencing a lot of meltdowns.

After two months, I took myself off of the medication. I more or less informed my GP, because she was really against me going off of it. I probably lowered my dose way too quickly, going from 1mg a day to 0.5mg for a week and then stopping altogether.

We will never be sure whether Risperdal worked for me, as I never went back on it. However, three weeks after stopping the medication, I started to spiral down into crisis and had to be hospitalized four days later. The crisis service psychiatrist didn’t say a thing about me having discontinued Risperdal.

An interesting thing I need to note, is the fact that Risperdal is notorious for increased appetite and weight gain. However, I experienced the opposite if anything. This could’ve been due to stress though.

Gratitude List (February 8, 2020) #TToT

Posted on by Astrid

It’s Saturday and I haven’t published a blog post in a few days. Today I am bored and slightly depressed, so I thought I’d join in with Ten Things of Thankful (#TToT) to lift up my mood.

1. Soap making. On Sunday, I asked my husband to sort through my soaping supplies. He didn’t need to though, as the essentials were all in a wheeled shopping bag. My mother-in-law took me back to the facility on Sunday evening, so she put the entire thing in the back of her car and helped me get it inside. I took it to day activities on Monday and have been making soap a few times this past week already.

2. Ordering new supplies. I didn’t have a lot of soap base in the bag, so I had an excuse to order new soaping supplies. Besides new soap base, I ordered bath bomb and bath salt making supplies. I never made bath bombs or bath salts before. I am really excited to try.

3. The cooking activity at day activities. I used to do a simple cooking activity with the staff intern on Wednesday. Now that her schedule has changed, we do it on Tuesday. This past Tuesday, we in fact had ingredients for two recipes: ham and cheese sandwiches and a creamy cookie dessert. The reason is that last week, we didn’t do the cooking activity because I had a meeting with the behavior specialist then. The intern had time to help me with both. We ate the sandwiches for lunch and had the cookie dessert later in the afternoon. It was extra gratifying, as the clients on my side of my day activities group can’t have sandwiches due to swallowing issues, but most can have the dessert. We served the sandwiches to the other side and I actually had both.

4. My weight. I got weighed in on Wednesday and I had a small gain of 200 grams (less than half a pound). I attribute that to all the treats I had on Tuesday though. I’m also happy, because people actually notice that I’m skinnier (or rather, less fat, of course) than I used to be.

5. Some long’ish walks. I mean, no, I don’t walk for an hour like I used to at my old day activities and with my home support staff, but I did have some walks of about half an hour. Despite not having walked in the evenings much this past week, I did manage to get to 175 active minutes.

6. The support from my assigned staff. I was somewhat distressed this past week, as I’m still not fully recovered from the meltdowns I had last week. However, my support staff are all very helpful.

Like, yesterday I had a meeting with my nurse from the mental health agency. When I explained my difficulty coping with the noise at day activities, she started to suggest I move to an apartment building for autistic people and occupy myself there or go work at a sheltered workshop. This isn’t suitable and my staff helped me explain this to my nurse.

7. French fries and ice cream. My husband said on Thursday that he couldn’t come by for a long visit today but could take me out to have some fries and a snack for dinner. Today, he canceled. Of course, I miss my husband, but I didn’t miss the fries, as my staff thought it’d be a good idea to order fries and snacks for the entire home. We also had ice cream, which was still left over in the freezer from Christmas. I had the last serving of whipped cream-flavored ice cream.

I can’t get to ten, but I’m definitely in a brighter mood now. I guess that should be my eighth grateful on this list. What have you been grateful for lately?

#IWSG: Ready, Set, Write?

Posted on by Astrid

It’s once again time for the Insecure Writer’s Support Group (#IWSG) day. I don’t really feel like checking in on it, but this at least is a monthly reminder to keep at least somewhat focused on my writing endeavors.

This past month was a mixed one when it came to my creativity. Early in the month, I was really inspired and really felt like writing fiction and poetry again rather than just blog posts. I did write one poem and read a ton of them, but my ideas for fiction never made it into actual stories.

I got ahold of a few interesting books on writing. One of them is called Ready, Set, Write and it inspired the title of this post.

Inspired by the advice in this book and others in the Adventures in Writing series, I started stream of consciousness writing in an app called Drafts. Several blog posts and the one poem I wrote this past month, were originally drafted in this app.

Still, I’m not sure I’m ready to actually devote much of my time to writing. It’s a great hobby, but like with everything, I don’t have the patience to practise and want to be at least somewhat proficient at it pretty soon. That’s probably why I keep disappointing myself.

On to the optional question of the month. This month’s question is whether you’ve ever been inspired to write a story based on a piece of art. I have not, as I am very artistically ignorant. I tried to blame it on my blindness, but then I realized there are other works of art besides paintings.

I did however very often base my stories on the fiction I read. This sometimes led to plagiarism. My best story yet, which should’ve become a young adult novel but never got finished, was inspired by a book about a teen whose mother had multiple sclerosis. It followed the same subject but its plot was very different.

How about you? Do you base your writing on works of art?

Weird or Creepy Interests

Posted on by Astrid

Today I have a lot on my mind, but not much I can put down into writing. To occupy you readers anyway, and to distract myself a bit, I’m participating in My Inner MishMash’s Question of the Day. The question is whether you have any interests most people consider weird or even creepy or gross.

Creepy or gross, no. I mean, yes, I’m interested in medicine, but not specifically in anatomy or bodily functions. I have some interest in genetic conditions, particularly rare ones, and of course I’m into psychiatry. Lately, I’ve been connecting the two and learning more about psychiatric aspects of genetic syndromes. I was fascinated when I was told one of my fellow clients has Christianson Syndrome, a form of X-linked intellectual disability that is similar in presentation to Angelman Syndrome. I at first felt weird googling the condition, but since the staff specifically told me about this client’s syndrome rather than me having overheard it, I felt okay in the end.

Weird, yes, definitely. I already commented on the original post that I’m into calendars and timekeeping. I still keep and cherish a twenty-year-old newspaper article explaining why the year 4000 shouldn’t be a leap year, among other things.

I also tend to get upset when people make calendar calculation mistakes, particularly when they do it on purpose. My husband likes to talk about 30th February, for example. As a teen, I used to calculate what day a given date fell on. I was particularly fascinated by dates before 1582, so that I could show people that I knew about the Julian/Gregorian calendar transition.

I also, when I still lived in Apeldoorn, loved riding random buses to memorize their route. Apeldoorn’s buses at least all used to go in an eight-shaped route, each time getting back to the station. That way, I’d never get lost even if I rode a bus I’d never been on before. Before I moved to Nijmegen, I had the bus schedule nearly memorized too.

Currently, I don’t have any weird or unusual interests that I’m particularly actively engaged in. However, when it comes to my “normal” interests, they do tend to be abnormally intense and detail-focused.

Do you have any weird interests?

#WeekendCoffeeShare (February 2, 2020)

Posted on by Astrid

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?