The Wednesday HodgePodge (February 22, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday again so I’m joining the Wednesday HodgePodge. Here goes.

1. What do you find is the most boring part of your life at the moment?
There isn’t anything extremely boring about my life, but my life isn’t exciting either. I’d say the thing that makes my life a bit boring is the fact that, due to the way things work at the care home, I can hardly make plans.

2. February 22nd is George Washington’s birthday. You’ll find his face on the US $1 bill. What’s the last thing you bought for roughly $1.00? (.94 €/ .83 £)
I honestly can’t think of anything. I do probably have some cash in my wallet but rarely if ever use it. I also hardly ever go into a store just for something that costs like $1. The closest I could get, when I checked my recent purchases on my bank account, is €1.35 for a box of tissues, but that’s not roughly $1 I’d say.

3. Is it ever okay to tell a “little white lie”? Explain.
It’s never really okay, but it is understandable in some circumstances. Is there a difference? I think so, in that I can see why I or someone else would tell a “little white lie” in some situations, but that doesn’t make it right.

4. What’s the last thing you ‘chopped’? Cherry pie, chocolate covered cherries, a bowl of cherries, cherry vanilla ice cream, maraschino cherries, a cherry lifesaver…your favorite cherry flavored something?
I don’t think I chopped anything recently. Honestly, when I used to cut veggies when cooking myself, given the size I’d leave them, it wasn’t really considered chopping.

I don’t really care for cherry-flavored anything, so give me a bowl of the actual fruit instead.

5. Describe yourself with three words using your first, middle, and last initials.
Okay, this is hard, if for no other reason, then because I don’t have a middle name. My last name does have a prefix though so I’m going with that.
Authentic, Vivid imagination, Weird.

6. Insert your own random thought here.
I have this burning sensation somewhere along my spine that I’ve finally decided I’m going to ask the staff to call my GP about. So far, when I’ve asked the staff to take a look at where I think the sensation originates from, they don’t see anything but I do have a large mole on my back that I’ve been worrying about for months now. A picture of it did get looked at by my old GP back in Raalte and he said it wasn’t of any concern. Let’s hope he’s right and the burning sensation won’t be anything worrisome either.

Illness or Injury

Posted on by Astrid

Today’s topic for Throwback Thursday is, as Lauren describes it, “Ouchies, owies and boo boos”. In other words, we’re asked to share our experiences of illness or injury when we were growing up. Now is an interesting time for this, as I’ve just recovered from the worst symptoms of COVID. Even though I had a mild case of it, I am tempted to take back my assertion that it’s “just a bad cold” even in my case. I’m still exhausted by 9PM, or at least was yesterday, and today just a walk around the day center had me horribly out of breath. Forget the elliptical, which I told my husband yesterday that I’d try to go onto today. Anyway, that’s as far as my current state of illness is concerned. Now, let me share about my childhood illnesses and injuries.

As a young child, until I had my tonsils and adenoids out as a Kindergartner, I was prone to colds and the flu. I can’t remember whether my parents let me stay home for most of these illnesses. Later though, we clearly had the rule that, if I ran a fever, I was sick and had to stay home. Otherwise, I wasn’t sick and had to go to school. Not that I remember ever “playing sick”.

I don’t think I was ever given medicine, such as painkillers, unless it was obvious from outward signs that I was sick either. I mean, I do remember having to take paracetamol as a child, but not for a headache or toothache. We did have a licorice-flavored cough syrup, but I only took it when my parents directed me to. In fact, it wasn’t until I was in my mid-twenties that I first learned to ask for medication myself. For the brief time that I lived independently and could take over-the-counter medications when I felt like it, I didn’t either unless a support worker directed me to. In fact, I remember buying a talking thermometer back then because I was feeling weak often and, relying on my parents’ rule that you had to have a fever to be sick, I wanted to know my body temp.

Similarly, I wasn’t taken to the doctor for minor illnesses or injuries usually, unless my parents decided they were enough of an outward abnormality to be taken seriously. I remember my father took me to the doctor one day when I was about fourteen because I had bad eczema on my neck. I didn’t see the need, but apparently it was so ugly that my father wanted me to get treated.

When I was about seventeen, I made my first appointment to see my GP by myself. I had a horrible earache, which turned out nothing to be the doctor could do much about, by the way. However, my parents said I also had to ask about getting treatment for my toenail fungus, which I didn’t consider particularly bothersome at the time. To be fair, I do now see they were right to be worried about my toenail fungus, even though it took me fifteen more years to finally get it treated properly. However, overall, I’d had it with their message that my outward appearance alone dictates when I should get help (medical or otherwise) and this was probably my first small act of rebellion. I never quite learned to gauge when I can trust my body’s signals (or my mind’s interpretation of them) and when I can’t. I’m finding that, for this reason, even up till this day, I rely mostly on other people’s judgment.

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

Posted on by Astrid

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

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

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

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

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

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

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

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

An Unexpectedly Productive Monday

Posted on by Astrid

Today, I’m feeling better than I was expecting when I woke up this morning. I mean, I didn’t sleep well last night. I was ruminating a lot into the wee hours of the night and then kept being woken by a fellow client’s screams. This client can’t speak or use any form of alternative augmentative communication. The staff think he was in pain, but they couldn’t figure out what was bothering him. Thankfully, he seems calmer now. I hope he actually is.

I had a pretty productive day today. In the morning, I went to my GP. I had to discuss how I’m doing with respect to my abdominal discomfort now that I’m on one magnesium tablet a day. Together, we decided to leave it at this for now. I’m not totally well, but I’m as well as possible.

I also asked him to do a breast exam, because I’ve been feeling some discomfort. I felt okay with a male examining my breasts, after all he’s a doctor. Thankfully, he found no abnormalities, but he referred me for a mammogram just in case anyway. It’s been scheduled for this coming Thursday, which I consider really early given the state of healthcare and the pandemic and all.

In the afternoon, I decided to sort through my polymer clay stash to throw out the clay I can no longer work with. I mean, I know all clay can be made workable if conditioned enough, but I just feel that it’s too much work for me given how totally crumbly some of them are and how some of them literally get shredded by my pasta machine.

In the evening, I went for a walk, made another polymer clay unicorn and decorated my room for Christmas. Yes, I’m early for someone from the Netherlands, as most people don’t start decorating until after St. Nicholas, but I won’t be celebrating that anyway.

How was your day?

Desperate Yet Determined #WotW

Posted on by Astrid

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

Gratitude List (November 12, 2021) #TToT

Posted on by Astrid

Hi everyone. I’ve really been struggling lately, which is one reason I haven’t written much. To get myself out of my rut, I thought I’d share a gratitude list. As usual, I’m joining Ten Things of Thankful or #TToT for short. Here goes.

1. I am grateful for salami pizza. We ordered delivery from the local Italian restaurant on Sunday and I had this.

2. I am grateful for the night staff who helped me calm even the slightest bit on Sunday night when I was experiencing severe mood dysregulation.

3. I am grateful for a new book to immerse myself into. I’m reading a collection of short, autobiographical stories from a Dutch GP.

4. I am grateful for relatively good weather again over the past week. We’ve hardly had any rain and, though the temperature was quite low for my liking, at least it wasn’t freezing.

5. I am grateful my abdominal discomfort seems almost gone. I think I’ve finally reached the right dosage of magnesium. We aren’t to evaluate it with my GP until sometime next week though. Fingers crossed.

6. I am grateful my assigned home staff has returned to work part-time again. Like I mentioned before, she had been on sick leave since late September, but she seems to be recovering. She worked part of my day activities shift on Tuesday and my evening one-on-one today.

7. I am grateful for white chocolate. I bought myself a chocolate bar yesterday. I have it in my locked kitchen cupboard so that I can’t consume it all at once, but that way I do enjoy it more.

8. I am grateful for new essential oils. I ordered cypress, mandarin and lavender. Lavender, I’d had before but had used up. The others, I’d never used before. I did have to throw out a few others that I either didn’t like or that had expired, but that’s okay.

9. I am grateful I finished my polymer clay owl. Some people think it looks more like a turkey, but oh well. I’ll write a separate post on how I made it with more pictures later.

10. I am grateful for my staff. I have been extremely depressed lately and have been convinced that they should and will abandon me. While I heard from the manager yesterday that three staff are indeed leaving my care home, this apparently has nothing to do with me and the staff I have the best relationship with, aren’t leaving (yet).

What are you grateful for?

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

#WeekendCoffeeShare (October 30, 2021)

Posted on by Astrid

Hi everyone. It’s almost 8PM here so I already had my last cup of coffee. Still, I’m joining #WeekendCoffeeShare. Or Weekend Soft Drink Share for me maybe, although I didn’t have a soft drink this evening either. Instead, I decided to have water with my chips. We have Pringles, the original flavor, so if you’d like some, here you go. Let’s have a drink and a snack and let’s catch up.

If we were having coffee, I’d share that, like I said yesterday, the weather was good most of the week. Partly cloudy, partly sunny with maximum temperatures between 13°C and even a rare 18°C on Thursday. Today though, it was raining most of the day. By early evening though, the rain stopped for a bit.

If we were having coffee, I’d tell you that, yesterday, I got in over 14K steps thanks to the great weather. Today, I only managed about 6K steps, but I did get in over 250 steps an hour during seven out of the nine hours between 9AM and 6PM. I consider that quite an achievement!

If we were having coffee, I would ask you all to pray for wisdom for both me and my GP with respect to our upcoming appointment regarding my abdominal discomfort. Like I said yesterday, I am grateful my X-ray was normal, but my discomfort is all but gone.

If we were having coffee, I would share that I ended up not pursuing the issue I mentioned yesterday with the €90 software I bought via PayPal from some shady vendor. I did reach the vendor, but he claimed the problem I was experiencing wasn’t on their side, so there’s no way I’ll get my money back. Oh well, I hadn’t had my hopes up too high.

If we were having coffee, I’d share that I finally did start crafting again. The project my staff saw that she brought the supplies in for today, was a polymer clay owl crafted around a metal ring. She also brought a finished owl she’d borrowed from the storekeeper who had inspired her, so that I had an idea what it should look like. It looked very different from how I’d expected it to look. I started working on the project today.

If we were having coffee, lastly I would tell you that my assigned staff, the one who was on sick leave but is slowly recovering, came to the care home for a few hours again today. Remember how I said a few weeks ago that I worried that I caused her burnout by sucking up her energy? Well, she went out of her way to reassure me that I didn’t make her sick.

She also cooked a meal for dinner with another client. It was a potato, leek and mince casserole. At first, I wasn’t sure I’d like it, but I did.

How have you been?

Gratitude List (October 29, 2021) #TToT

Posted on by Astrid

Hi everyone on this Friday evening. I’m doing a gratitude list again today. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my abdominal X-ray came back all normal. There’s no constipation or excess gas. Of course, this does mean we still don’t have answers as to what is causing my abdominal discomfort and how to deal with it. I have another appt with the GP to discuss further steps.

2. I am grateful my staff, the one who was on sick leave, is slowly returning to work. She came by for a quick visit yesterday.

3. I am grateful for nice weather. Most of the week, the temperature’s been above-average for this time of year, with today it going as high as 17°C. It’s been pretty clear and sunny with no rain too. The weekend is supposed to be different, but oh well, that’s okay.

4. I am grateful for interesting conversations. I’ve been exploring the enneagram again and engaged both my husband and several staff in discussions about it. I got one staff to take a test and, assuming the test typed her right, so did I.

5. I am grateful my creativity seems to slowly be returning. I’m not yet actually creating anything, but I’m exploring polymer clay again. One of my staff is going to bring me some supplies for creating something she saw online or in a book tomorrow and I’m really looking forward to it.

6. I am grateful I had the guts to finally press the “report a problem” button on one of my most recent PayPal purchases. I spent €90 on what looks in theory like pretty amazing software. Turns out though that the license information I was given doesn’t work. I tried to contact the vendor via their website but got an “undelivered” E-mail response. I saw that their PayPal contact info was different, so before proceeding to actually report the problem to PayPal, I decided to try one more time to contact them via that E-mail address. Fingers crossed this will work.

7. I am grateful for yet more newly-discovered essential oil blends. I still haven’t bought more oils in part due to said €90 I might’ve thrown down the drain, but I love learning new ways I can use the oils I do have on hand. I currently have a blend of cinnamon, ginger and ylang ylang in my diffuser.

8. I am grateful for salad again. My day activities staff and I made this for lunch (well, she did the actual making) on Wednesday and there was still some left on Thursday.

9. I am grateful for all the sensory equipment I have right here in my room. On a Messenger chat, we were discussing ways to cope with anxiety and I mentioned my essential oil diffuser, weighted blanket and music pillow. These things make me so privileged.

10. I am grateful I am safe in the care facility. I find it hard to say this, but it’s true.

What are you grateful for?

Gratitude List (October 22, 2021) #TToT

Posted on by Astrid

Hi all on this mixed-bag Friday weather-wise. It’s cloudy with some rain, but the sun tries to peek through here and there too. I seem to have given up on the blogging challenges entirely, but I’m still attempting to write as often as I comfortably can. Today, I’m doing a gratitude list. I’m joining Ten Things of Thankful (#TToT) as usual. Here goes.

1. I am grateful my staff, the one who is on sick leave, was happy with her presents. Like I mentioned before, I gifted her a handmade soap, hand cream and bracelet. Another staff delivered it to her house as to allow me to save money on postage. The staff who is on sick leave, later texted the other staff an audio recorded message for me. It was so sweet!

2. I am grateful for my nurse practitioner and community psychiatric nurse. On Sunday, I landed in a bit of a crisis and E-mailed them, along with my assigned day activities staff and my support coordinator. My nurse practitioner responded on Monday. Though I felt like he was downplaying my crisis a little, my CPN later said that she at least felt that I was doing well because I asked for help.

3. I am grateful my GP takes me seriously. This really could’ve been a grateful for last week, but I forgot to mention it then. As regular readers of this blog might know, I’ve suffered with what doctors think is irritable bowel syndrome with constipation for years, but it’s gotten worse and somewhat different over the past nine months or so. I saw my GP about it a few weeks ago and he initially sent me home with orders for the staff to fill out a rating scale on my bowel movements. Boy, was it embarrassing having to ask the staff to look at my poop! Thankfully, it did show that I hadn’t been misguided about my symptoms. Last week, we went back with the rating scale and the doc examined me again. After discussing me with the gastroenterologist, he decided to refer me for an abdominal X-ray. It’s been scheduled for this coming Tuesday.

4. I am grateful for my husband’s ability to put things into perspective. I have been worried sick (no pun intended) about the possible outcome of said abdominal X-ray. My husband though said that, since I’ve been having symptoms for as long as he knows me, it’s not likely to be anything serious.

5. I am still grateful for topiramate. The increased dosage does seem to do something in the end. Last night, I had dreams about leaving the care facility, but they do not seem to affect me as much as they used to. I call that a win!

6. I am so grateful for one-on-one support. I cannot say this often enough. I am so very grateful my staff aren’t leaving me when I’m in crisis.

7. I am grateful the chili con carne I had for dinner yesterday was better than I expected. I hadn’t had meal delivery company chili in a while since it’s part of their fall/winter menu. However, I’d remembered it as dry rice with dry beans and a tiny bit of mince thrown in. To my surprise, they’d actually added some sauce and there was more mince in it than I expected.

8. I am grateful that the people who were installing blinds on my side of the building, are finally done doing so. Originally, only the other side of the building had blinds on the outside, but some of my fellow clients suffered badly from the sun shining through their windows during the day especially in summer. It took the company several weeks of installing the blinds and they had to be in each room to program them too. Thankfully, they programmed mine to manual, not automatic. Otherwise, if it’s sunny, the blinds will go down, then if a bit of wind blows they will go up, then down again, up again, etc. I’d rather keep them up and just draw the curtains when it’s sunny.

9. I am grateful that, when they were working on my blinds this afternoon, my one-on-one took me to the snoezelen® room at the day center. After all, the noise was quite unbearable. I loved lying on the waterbed while there was no-one in the adjacent room. So nice!

10. I am grateful I had the energy to go on the elliptical for over 30 minutes this afternoon. When I first stepped onto it, it felt as though I’d hardly manage 15 minutes, but I did pretty well.

What are you grateful for?