A Few Really Intense Days

Posted on by Astrid

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

#WeekendCoffeeShare (November 28, 2021)

Posted on by Astrid

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

Posted on by Astrid

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?

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 (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?

#WeekendCoffeeShare (October 17, 2021)

Posted on by Astrid

Hi everyone. I’m rather late joining #WeekendCoffeeShare this week and I’m afraid there’s no coffee left. You can help yourself to a soft drink or a glass of water though. I also have chips in my cupboard. After yesterday’s crying fit over there only being the wrong flavor left, I decided to buy some myself. I did ask the staff to put them into a cupboard which they only have the keys to, but I’m pretty sure they’ll love to open it for you. Let’s have a drink and a handful of chips and let’s catch up.

If we were having coffee (or a soft drink and chips), I’d share that this week is still quite meh. Early in the week, I was feeling a little more optimistic at the prospect of starting my increased dosage of topiramate soon. I started it on Friday and so far, unfortunately, no change. I am grateful though for no side effects either.

Over the weekend, I’ve really been struggling. I landed in a bit of a crisis earlier this evening, but thankfully pulled myself out of it. I did E-mail my nurse practitioner and CPN at mental health to let them know I’m worried about deteriorating. My husband said I’m not, but the fact that I keep increasing my meds, tells me otherwise

If we were having coffee, I’d moan about my orthopedic footwear after all. The shoes squeak and, though I’m still not in terrible pain, I cannot walk for more than twenty minutes on them without them feeling horribly uncomfortable. Mostly my left foot, the foot on which I wear the AFO, starts to drag. I haven’t heard back from the physical therapist, but am pretty sure she’ll just say I need to push through.

If we were having coffee, I would show you all the soap I made for my assigned staff, the one who’s on sick leave. I heard last Thursday that she’ll remain off work until the middle of November or so due to among other things her needing to use up all her days off for the year or they’ll disappear.

Like I said yesterday, the soap contains vetiver, lavandin and clary sage essential oils. I decided to use a white soap base and no colorants, because I felt the scents would speak for themselves.

If we were having coffee, lastly I would share that my husband came by today. We drove to Subway for lunch. I dutifully wanted to get out my CoronaCheck app, but my husband told me to wait. As he expected, they didn’t ask us for it. The taco beef wrap I chose, was rather boring and I’m pretty sure the mince they put in it was vegetarian rather than beef. Oh well, now at least I know what not to choose next time.

How have you been?

Gratitude List (October 8, 2021) #TToT

Posted on by Astrid

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?

Unsettling Dream

Posted on by Astrid

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

#WeekendCoffeeShare (July 9, 2021)

Posted on by Astrid

Hi everyone on this partly sunny and warm Friday evening. I’m joining #WeekendCoffeeShare. I’m afraid it isn’t time for our evening coffee for another hour yet, but I can offer you a glass of water or of course make you a Senseo coffee in my own coffee maker. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share about the topiramate. Yay, I finally started it and yay for no side effects! That being said, I’m not noticing any positive effects either as of yet and my nurse practitioner said it’ll be four to six weeks before we’ll increase my dosage. That disappointed me a bit, given that the max dosage for PTSD symptoms is six times what I take now, so it’ll take at least six months to get to that level and then if we decide this medication isn’t for me after all, six more months to get back off. Maybe I’m wrong here, since I’ve never had a medication not work on me at all before. I’ll discuss all this with my nurse practitioner when I next see him. Of course, here’s hoping the medication will start working in a few weeks.

Next, if we were having coffee, I’d share that I’ve experienced an increase in motivation lately. This has been going on for a few weeks already, but I’m noticing it might stick around longer now. Usually, it only lasts for a week or so and then diminishes again.

I have not been as crafty this past week as I was last week, but still I’ve not been disappointed with my level of activity.

If we were having coffee, I’d tell you that I talked with the care facility’s behavior specialist yesterday. We decided to let the moving care homes issue rest for a bit, but get back to it in about two months’ time. I really do hope we can work on making my life in my current care facility better, as she’s right that every place has its positive and negative sides.

If we were having coffee, I’d moan about the rapid increase in COVID cases here in the Netherlands. We’re due to get another press conference from the prime minister at 7PM. I’m not expecting any measures that will affect me directly, but still, it sucks.

If we were having coffee, I would share that I’ve been spending quite a bit of money on my hobbies lately. I ordered several new essential oils, including the Roman chamomile I mentioned on Wednesday, as well as a full liter bottle of sweet almond oil. I also ordered a kitchen scale. Not a talking one, as they’re too expensive for my liking. I’m hoping all my supplies will arrive either tomorrow or next Monday.

If we were having coffee, lastly I’d tell you I’m loving looking at sites for bath and body recipes. I already created a pink grapefruit and lemon massage oil. Since both essential oils are phototoxic, I took extra care to dilute them properly and so far, so good. I used the oil on my hands yesterday and am absolutely fine despite the sunshine now.

How have you been?

Currently (July 2021)

Posted on by Astrid

I usually don’t participate in the Currently linkup, in part because the prompts don’t always inspire me and in part because the posting day coincides with the Insecure Writer’s Support Group. I still follow Anne’s blog in my feed reader though and today, I decided to check out her post. It’s quite an easy one this month, so here goes.

Eating

Way too much. When I would initially be prescribed my currently latest medication, topiramate, the psychiatrist told me that it may cause me a decreased appetite. So far, not so. It’s not a problem though, since, even though I’m overweight, my weight is stable.

Today, my day activities staff took me to the local marketplace and we bought fish and chicken wings for lunch and I bought a giant waffle called “stroopwafel”.

Now in case you’re thinking I’m chronically overeating, I normally eat a pretty balanced diet.

Feeling

Okay’ish. I’ve had a few rough weeks, as regular readers of my blog will know. However, I still find moments of joy, particularly when I’m crafting.

Going

To Lobith. For those visiting from the linkup, I live in a care facility in Raalte, Netherlands. My husband lives in Lobith, about a ninety-minute drive away. I normally go to Lobith about twice a month, but I went there both last weekend and the weekend before for my birthday celebrations.

Ordering

Most recently, some jewelry-making supplies. However, I already have my eyes on a number of relatively affordable essential oils too. I mean, oils that would cost over €50 for a 10ml bottle normally but I can get for €20 at some stores apparently. Think Roman chamomile. I know, it’s probably not the best quality, but my wallet has a will of its own. I need to restock my sweet almond oil too, as I just used most of what I had left for a massage oil yesterday.

Realizing

That I may need to stop evaluating my life and start living. This is sort of the take-home message I got from my psychiatric nurse practitioner at my last appointment on Monday. I was talking about possibly wanting to find myself another care home and compulsively looking for it. I mean, checking out care agencies’ websites on a daily basis for suitable homes. This really isn’t helping, since even if I need or want to leave my current placement, I’ll need guidance on finding myself another place to live. As my nurse practitioner said, I’m evaluating my life each day again rather than seeing each day as just the day it is.

Unfortunately, part of me is feeling as though his message means I need to accept a rather difficult living situation just because it isn’t time to evaluate yet. I can see his point about not checking out care agency websites daily, but the compulsion is also hard to break, as this is what I’ve been doing pretty much my entire adult life. For those not aware: I lived in one temporary placement or another from age nineteen until I moved to the current care facility in 2019. It’s only natural that I cannot believe that this is where I can stay.

What’s up with you?