Moaning About My Meds

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.

Gratitude List (January 1, 2022) #TToT

And here I am with another post. I am determined to start the year off on a positive note even though I’m in a pretty foul mood right now. For this reason, I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful. Here goes.

1. I am grateful for Psalms 100. This is a psalm of gratitude which was the focus of study in the first day of the YouVersion New Year’s Bible reading plan I started today. It inspired me to do a gratitude list today.

2. I am grateful I could see the fireworks last night. I only saw brief flashes of light, no colors. Officially, real fireworks were banned this year due to COVID-related restrictions, but no-one apparently cared.

3. I am grateful I slept relatively well last night despite the fireworks. I went to bed at 10PM yesterday evening, woke up at midnight and went back to sleep at around 1AM. I got up at 8AM to start the writing ritual I mentioned earlier this afternoon.

4. I am grateful the festivities are over with for a while now. I don’t like the lack of structure. I am also grateful that, this year, it wasn’t too bad, as both Christmas and New Year’s are on weekends.

5. I am grateful we had French fries for dinner yesterday as a New Year’s Eve treat.

6. I am grateful I don’t have any symptoms suggestive of COVID as of yet, after one of my staff tested positive earlier in the week. I decided not to get a lateral flow test yesterday after all.

7. I am grateful the dietitian said I already eat pretty healthily. At least that’s what my assigned staff told me when she’d E-mailed her my current list of things I eat. There are some things I’m not likely willing to change, like my crunchy muesli for breakfast, but some things I definitely am open to suggestions and alternatives about.

8. I am grateful I was able to take a few walks again today. They were short walks, but at least I was able to get outside.

9. I am grateful for all the great blogs I’ve been reading today. I do feel a little disappointed that my posts are getting fewer comments lately than they used to get, but this may be a phase. I do still find joy in writing my blog posts.

10. I am grateful for a ton of blogging-related inspiration. Seriously, how will I find the time to type up all the posts for which I have ideas floating around in my head? I’m so glad though that my creativity is flowing. It isn’t coming out in my polymer clay as much, but it is showing up in the form of writing.

These are seriously all gratefuls from the last 24 hours, with the exception of the French fries, as it’s now 6:30PM and we eat dinner at 5PM. I feel a lot better having jotted down these things I’m thankful for.

What are you grateful for?

Gratitude List (December 10, 2021) #TToT

Hi all on this cold but lovely Friday. Today, I’m doing a gratitude post, just because I can. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my mammogram came back all clear. I still suffer with slight discomfort, but I feel comforted knowing it’s nothing serious.

2. I am grateful I got my COVID booster shot yesterday and I didn’t even suffer a sore arm. Well, not that arm, at least. All my limbs were stiff this morning, except for the arm I’d been jabbed in.

3. I am grateful my one-on-one support got approved again. Not only that, but it got approved for two years this time! I am so intensely happy, but still can hardly believe it.

4. I am grateful for crafty inspiration. I am currently working on a mixed media Christmas project which includes polymer clay.

5. I am grateful my husband was able to sort out my health insurance for next year. Here in the Netherlands, basic insurance is mandatory but you get to pick your own private insurance company. The government decides what is covered under basic insurance but insurers get to fill in the fine print and decide which care providers (eg. doctors, hospitals, etc.) to contract with. In addition, they get to offer additional coverage packages. For several reasons, my current health insurance was no longer fitting for me, so I decided to change insurers, but needed my husband to help me make the actual switch. I am so glad it seems to be sorted now.

6. I am grateful we still have pepernoten. That’s a typical St. Nicholas (December 5th) treat and I love it!

7. I am grateful that I was able to have quite varied lunches over the week and most were relatively healthy too. I had Turkish pizza on Wednesday, which was my unhealthy lunch of the week. Yesterday, I had a boiled egg on bread and today, I had a toasted cheese sandwich. On Monday and Tuesday, I think I had my usual lunch of a peanut butter sandwich, which I don’t really like.

8. I am grateful I was able to clean my essential oil diffuser (the new one) yesterday and that it was hardly dirty at all.

9. I am grateful for my Christmas tree and its lights. Its lights were almost out this afternoon, so initially I thought its batteries were empty. That would’ve been highly annoying, since I had only put the batteries in last week. Thankfully, switching the position of the batteries did the trick of turning the lights on again.

10. I am grateful I have been sleeping really well over the past several nights. Last week, I had a few rough nights, but this week is much better.

It was harder than I expected to actually make it to ten things of thankful. I mean, I am overjoyed at my one-on-one having been approved, but that makes for only one item on the list. However, I am trying my best to remind myself that even the little things in life that I am grateful for, can and should make it onto this list.

An Unexpectedly Productive Monday

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?

#WeekendCoffeeShare (November 28, 2021)

Hi everyone on this Sunday afternoon. It’s a little less rainy today than it was yesterday, but it’s still cold outside. Today, I’m joining #WeekendCoffeeShare again. As I type this, I am right between my lunch and my afternoon coffee. I can probably offer you a coffee before I finish this post, ha. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was better than the previous one. Like I said yesterday, my appointment with my nurse practitioner went pretty well and we were able to get to some agreements that will hopefully lead to better treatment for me. For example, I’d struggled to convey in an E-mail how I was struggling two weeks prior and he had asked me to wait for our appt to discuss the matter. That hadn’t sat well with me, so now we agreed that next time he’ll try to call me to further assess the situation.

We also agreed that he would try not to stop me or change the subject if I’m struggling or getting emotional while trying to communicate something. I gave as an example one time when I felt unable to speak and he, possibly not wanting to push me, said: “We don’t have to discuss anything if you don’t want to.” Overall, I feel slightly optimistic about my treatment going forward and I consider that a major win given the desperate state I was in last week.

If we were having coffee, I’d also share that I got some insight into the near-hallucinatory, dysregulated states I occasionally go into at night. My nurse practitioner thinks they might be related to the phase between being fully awake and being asleep. Unfortunately, there’s little to nothing to be done about them, but it feels comforting to know I’m not really “losing my mind”. It also seems, from this idea, unlikely that I’m going to experience these states during the day and really “going crazy”.

If we were having coffee, I’d tell you that, unfortunately, I did experience nightmares last night. It’s probably to do with the flashbacks and memories I experienced yesterday. I am so grateful though that the nightmares aren’t affecting me too much now that I’m awake.

If we were having coffee, I’d tell you that, thankfully, I’ve also been a little more active lately than I was before. Like I mentioned yesterday, I made a polymer clay unicorn on Thursday. My husband wants to have it. I’ve also been reading more lately. I won’t at all reach my reading goal for the year or even come close to how many books I read last year, but at least I finished another book.

If we were having coffee, lastly I’d ramble a bit about how scared I am because of the rapid rise in COVID cases here in the Netherlands. Today, we’re entering an evening lockdown. Stay-at-home orders have also been extended to recommending people work from home unless it’s not possible, like during the first lockdown in March of last year. I’m scared this will mean the day center closes again. More so though, I’m scared of contracting the virus or even a cold and needing to quarantine in my room. Let’s hope I won’t.

How have you been?

Gratitude List (November 27, 2021) #TToT

Hi everyone on this rainy Saturday! I hope all my U.S.-based readers had a great Thanksgiving. Here, it isn’t a thing. However, I like to show thankfulness everyday. For this reason, I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I reached my goal of 10K steps a day once during the past seven days. Okay, it was on Sunday and I only got (barely) more than 5K steps one other day this past week (Monday). The rest of the week, I’ve been rather sedentary. However, I’m still grateful I can apparently still walk 10K steps in a day.

2. Speaking of which, I am also grateful I managed 15 minutes on the elliptical today. It didn’t earn me much in the way of steps, but at least my muscles haven’t totally atrophied so far.

3. I am grateful I had a good talk with the current behavior specialist for my care home on Tuesday. It was my second time meeting her. She helped me clarify some of the things I wanted to talk about with my nurse practitioner too.

4. I am also grateful my appt with my nurse practitioner went pretty well as a result too. I had originally considered quitting treatment with him, but decided against this after the talk with the behavior specialist. Overall, my appt with my nurse practitioner was relatively constructive. We decided on some things to make our sessions more productive. For instance, next time I E-mail him about not being well, he’ll try to call me back so we can assess the seriousness of the situation and what can/needs to be done rather than him telling me to wait for our next appt.

5. I am grateful I am sleeping slightly better lately than I used to. I am still not usually getting the nine hours of sleep a night I need to function optimally, but I’m getting close.

6. I am grateful I have been able to pick up the polymer clay craft again after a bit of a break when I’d finished the owl. I created a unicorn yesterday and it looks pretty cool.

7. I am grateful for French fries yesterday in celebration of St. Nicholas. The holiday isn’t till December 5th, but we celebrated it early at my care home.

8. I am grateful I got nice presents. Well, my husband will actually get the bill, as like I explained before, the care facility doesn’t pay for St. Nicholas presents. I had E-mailed my staff a wishlist too. As it turned out, I didn’t get the specific things I’d had on my wishlist, but I got similar things. I got a number of cookie cutters to use with my polymer clay and a little box of fruit candies.

9. I am grateful my assigned home staff, who was my one-on-one this evening, helped me through some tough flashbacks. I did ultimately decide to take a PRN quetiapine, but I think I really benefited from my staff’s help too.

10. I am grateful my loved ones so far aren’t directly affected by COVID, in the sense that I don’t have any direct family members or friends who’ve contracted the virus.

What are you grateful for?

Living With Sleep Disturbances

On Monday, I wrote about my relationship with the night. Today, I saw that the topic for Tale Weaver this week is sleep. I thought I’d use this opportunity to expand on Monday’s post a little and write about my various sleep issues. After all, being a night owl is one thing. Experiencing significant sleep disturbances is quite another.

First, there is of course plain old insomnia. I talked about this on Monday mostly. For as long as I can remember, I’ve had a lot of trouble falling asleep. Once I was asleep, staying asleep usually wasn’t that hard, except during times of significantly elevated stress.

Then there was the opposite. I honestly don’t think I ever truly suffered with hypersomnia, but there were definitely times I slept far more than I should have. These were often times of low stimulation. IN other words, I was bored to the point of sleeping.

Then there are these sleep disturbances that I cannot really classify and, since I haven’t been to a doctor with them at this point, neither can anyone else. I get really weird half-awakening states where it feels as if I’m doing something for which I should clearly be awake, only to realize later on that I wasn’t doing anything at all and was just half-awake thinking of doing something. With this come weird sensations, almost like hallucinations, too. These half-awakenings currently are very scary. I’ve heard they might be a sign of sleep paralysis, but I don’t think I experience the actual inability to move upon waking up that comes with it.

Then there are nightmares. I don’t get your standard child’s monster-under-your-bed nightmares. Neither do I get violent nightmares usually. In this sense, my nightmares don’t fit the criterion for PTSD. Then again, probably neither does most of my trauma, as most of it was mental and emotional abuse. Rather, I get nightmares that relate to my anxieties, such as of being kicked out of the care facility.

With these half-awakenings and my nightmares, it’s no wonder that sleep often invades my day-time life and vice versa. I find that nightmares often seem to go after me during the day and half-awakenings scare me too. This in turn contributes to a fear of going to sleep, which contributes to insomnia.

One sleep disorder I need to mention here, which I thankfully don’t have, is non-24-hour circadian rhythm disorder. This is common in totally blind individuals and occurs because our natural biological clocks seem not to co-occur with exactly the 24-hour clock of a day. This is corrected in people with some vision by the perception of light and dark, which regulates melatonin production. I have hardly any light perception left, but thankfully my sleep-wake cycle does not seem to be affected as of yet.

My Relationship With the Night

I have a really complicated relationship with the night. On the one end, I’m a true night owl and can enjoy sitting up late reading a book or browsing the Internet. Before the Internet, I used to listen to a talk show on Dutch public radio called “Night shift” on weekend nights between 2AM and 6AM. The show might’ve aired on week nights too, but I wouldn’t allow myself to stay up past 1AM then. (Yes, I wouldn’t allow myself. My parents didn’t set a bedtime for me past age ten or so.) In the show, people called in to ask for advice or opinions on sometimes rather mundane topics, such as the difference between fruit and vegetables.

One time, a woman called in to ask for opinions on her eye condition. She literally had a hole in her eye, she explained, which she could see when there was static on TV. The hole, however, also meant she was unable to see facial expressions, which limited her card-playing ability. She assumed that and wanted opinions on whether she could have gotten the hole because of fifteen years of almost daily crying. I don’t know whether she ever received a satisfactory answer, but I do know that story brought chills to my spine.

As I said, I’m a true night owl. Others might call me an insomniac. In fact, I’m pretty sure my relationship with sleep and the night was rather unhealthy for most of my life. As a young child even, I used to stay up late at night worrying about things I’d seen in the news, things I’d heard or experienced during the day, etc. My parents hardly comforted me. In fact, they pretty much left me to my own resources. That’s one reason they didn’t set a bedtime for me.

When I lived on my own in 2007, I had an even worse relationship with the night. I developed something akin to OCD that mostly showed up at night. I had to check each night whether my alarm was on, door locked, windows open, heating off, electronics unplugged and I’m pretty sure I forgot something. I’d spend hours going through my apartment checking each several dozens of times.

During the last week of my living on my own, I’d often leave my apartment in the dark to go outside and wander the streets. I still get flashbacks of this darkness now.

Once in the psych hospital, the first medication I was put on, was temazepam, a sleeping pill. That worked for all of two weeks. Then I got put on Nozinan, a strong sedative, which however kept me drowsy for most of the day too. Then followed nitrazepam and diazepam until I finally decided I’d rather have insomnia without meds than with meds.

I eventually did have to go on meds after all, but these were daily meds. I currently don’t experience severe insomnia, but I do experience disrupted, restless sleep and nightmares. I did back in 2007 too, but, though I did mention it when admitted to the hospital, it never got paid attention to. Thankfully, my latest addition to my psych med combo, topiramate, does help with this.

This post was written for today’s Tourmaline’s Halloween Challenge prompt: night.

Gratitude List (October 8, 2021) #TToT

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

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

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

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

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

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

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

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

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

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

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

A Perfect Health Day

I can’t remember when or why I bought the book 1000 Journal Prompts That Will Transform Your Health by Sophia Ley, but today, I felt myself drawn to it. In it, one of the prompts asks us to describe a perfect health day. Here goes.

I get up at 8:30AM. I start my day with prayer. This may not be a direct physical health habit, but it certainly helps me get in the right mindset for focusing my day on what’s right. I then get showered if it’s a day I do this or else I get a quick wash.

After I get dressed, I eat breakfast. I eat yogurt with a little crunchy muesli. This may not be the healthiest food choice physically, but it is something I definitely love and don’t really feel I want to give up on. I also eat some fruit.

After breakfast, I take a little break for writing in my journal and Bible reading. Then I go on the elliptical for 20 minutes. I’m assuming it’s a weekday. If it isn’t, I can go for my first walk instead, as my one-on-one will be there. In that case, I’ll go on the elliptical during the afternoon.

When my day activities staff arrives at 10:15AM, I have coffee. I don’t have a cookie with my morning coffee.

Then I go for a walk of about 25 to 30 minutes. After this, I usually will have some time left to do some of my crafting before my staff goes to help prepare lunch.

For lunch, I have two crackers or slices of bread with peanut butter or jelly. Again, these aren’t the healthiest food choices I can imagine, but way healthier than my current choices of lunch food on most days. I also have some slices of cucumber or some cherry tomatoes and a serving of fruit. I will have another serving of fruit in the evening.

After lunch, I will spend some time doing weight training and resistance band exercises. Then, when my staff returns from their lunch break, I’ll go for another 25-minute walk. Then I’ll have another cup of coffee, again with no biscuit.

I will spend the rest of the afternoon on my hobbies, such as blogging or reading. In the evening, I will go on two more walks with my one-on-one. In total, I will reach my goal of 10K steps.

I will have my evening meal from the meal delivery service as usual. For dessert, I will have a small serving of fruit yogurt.

In the evening, I will drink green tea rather than coffee. Throughout the day, I will also make sure I drink at least two liters of water. This means I will have a glass of water after each walk and with each meal, as well as with each medication round. I will obviously take my medications as prescribed. When it’s a perfect health day, I hope I won’t need my painkillers anymore, but that seems to be beyond my control.

I will brush my teeth twice a day, morning and evening. At 9:30PM, I will start to unwind for bed. I will say a prayer. Then, I will diffuse a relaxing essential oil blend and start a soothing sound track on Spotify. I will go to bed at around 10PM. I will probably fall asleep within half an hour and have a good quality of sleep.

Looking over this, some of these things seem relatively easy to include into my day. Some are harder. Of course, I didn’t take into account the possibility of a severely rainy day when I can hardly go for walks. I’ll have to think of alternative ways of getting active then.