Unsettling Dream

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)

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)

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?

Nurse Practitioner’s Appt This Afternoon

I had a brief meeting with my nurse practitioner this afternoon. Even though it was only half an hour, we discussed a lot of things. First we made concrete plans for me to start the topiramate. Like I said before, I would need to be on the injectible birth control for two weeks before I could start it. That would be next Thursday, but I proposed I won’t start with the topiramate until the Sunday after that, July 4. That way, I won’t be just starting out when I go to Lobith on July 3. This was okay with my nurse practitioner and he’d make sure the pharmacy would get it ready on time.

Next, we discussed my bloodwork results. In the part that measures metabolic health, nothing worrisome was found. I asked about my kidney function and first my nurse practitioner said that unless your estimated GFR is below 60, it’s no reason to worry yet. Mine was 81. He checked my previous lab results. My estimated GFR was 71 in 2019 and 82 in 2020, so there’s not a clear decrease either.

He also complimented me on my cholesterol level, which was completely normal. Of course, there is only so much you can do about high cholesterol, but apparently I’m doing what I need to. It probably helps that I don’t drink and try to eat a relatively healthy diet.

Then the other page showed my blood level for my antipsychotic aripiprazole and its active metabolite. These were quite high. This means that side effects may outweigh the effectivness of the medication. While I don’t experience any major side effects, we will try to lower my aripiprazole dose in the not-too-distant future. That’s been a long-time wish for me anyway.

Then we got to discuss my crisis last week and my conversations with my husband. My husband had suggested I might have dependent personality disorder and I eventually thought he was right. Of course, in my mind, this led to all kinds of additional conclusions that my husband hadn’t mentioned, like my not having trauma-related issues and my not even being autistic and my being one giant manipulator.

My nurse practitioner said that DPD rarely if ever goes alone and that he wonders whether it even is a valid diagnosis. It is according to DSM-5, of course. He added that this is one of the most negative diagnoses to give someone. My nurse practitioner obviously didn’t mean my husband, as he didn’t really try to diagnose me at all, just wanted to give me food for thought. We will further discuss my issues with dependency in the future.

Overall, it was a good appt. As my nurse practitioner hadn’t read the E-mails we (meaning my inner people) had sent him over the weekend, we didn’t go into those specifically. Those E-mails had included a lot of self-loathing and self-doubt, including about our possible DID. I did explain about the dependency issue, like I said above. He also made sure I’m no longer in actual crisis. I confirmed this. This means I no longer need more frequent contact with the mental health team than I normally have.

Just Rambling

IWSG

I really should be posting my Insecure Writer’s Support group post today, but I’m not fussed. I didn’t write as much over the past month as I’d liked to and the optional question doesn’t appeal to me. For this reason, I’m just going to ramble. I will post the #IWSG link and image on this post, but I won’t really be sharing much writing-related news.

I mean, the optional question is how long you let drafts sit there before redrafting. The short answer is that I don’t really do drafts. I write my pieces in one go usually and publish them onto my blog right away. Of course, I do have freewrites and some works-in-progress that I haven’t published anywhere, but even my one published piece that I wrote back in 2014, I wrote in one sitting.

Okay, now that we have this out of the way, let me ramble about other stuff. Today, like most of the past month, has been mixed. I was okay for most of the morning and afternoon, but in the evening, I’ve really been struggling. My feelings that, if I drop my mask (figuratively speaking), everyone will run from me and no-one will want to care for me anymore, are intense. For those who might be visiting from the IWSG: I live in a care facility due to my multiple disabilities, including challenging behavior. Lately, I’m spiraling more and more out of control and this seems to create a vicious cycle of anger, shame, self-hatred and more anger.

Yesterday, I had an appointment with my psychiatric nurse practitioner. We decided there that I won’t go the diagnosis route for dissociative disorders, but that off the record at least we agree that I have dissociative identity disorder (DID). We won’t do a whole lot of system mapping. Not only have I done this already, but it seems counterproductive to the idea of needing to practice being present.

Speaking of which, I looked up the learning to be present exercise in the first chapter of Coping with Trauma-Related Dissociation and had my staff write it down. The book is in English (at least, my edition is) and my native language is Dutch, so I translated the exercises and where appropriate, adapted them to suit my needs. After all, one of the exercises is naming three things you can see around you. As I am blind, this won’t work. I do find that other exercises do help me. One in particular is the butterfly hug.

Tomorrow, my GP will get back to me about my medication. I would’ve gotten topiramate prescribed to me for my PTSD symptoms, but found out last week that it’d block my birth control pill from working. My nurse practitioner would originally have prescribed the topiramate, but now I need to work something out about getting on a different contraceptive first. This will hopefully be sorted tomorrow or at least then I’ll know when I can come in to see my GP about it. I really hope this medication (the topiramate) will help, since I’m on quite an emotional rollercoaster.

Gratitude List (May 28, 2021) #TToT

It’s really been forever since I last did a gratitude post. I’m not too happy at the moment, but maybe doing one will cheer me up. As usual, I’m joining in with Ten Things of Thankful (#TToT.

1. I am grateful for a sunny and warm day today. After weeks and weeks of cold and rainy weather, the sun is finally shining and the temperature rose to 18°C this afternoon. The weekend and next week are supposed to be even better.

2. I am grateful my Braille display will be fixed and hopeful the company won’t claim it’s my fault that it’s broken yet again. Like I said before, they originally claimed I had caused my original Braille display water damage, but they couldn’t prove it, since it’d been lying in their storage for a year. Now this one has similar issues to the other one, but again I have no recollection of ever getting water on it. For now, they are saying there is no reason to think it’s water damage this time around. The problem if it were wouldn’t even have been the one-time expense of getting it fixed (€1500), but the precise fact that I have no recollection of ever getting water on my Braille display and so I can’t prevent the same problem happening again. For now though, I am thankful it will be fixed.

3. I am grateful for my staff, who help me through the hard times I’m going through lately. I experience a lot of triggers and resulting flashbacks. Thankfully, my staff keep reassuring me and all my inner parts, that we’re safe now.

4. I am grateful for my nurse practitioner and community psychiatric nurse. They both help me too.

5. I am grateful for wraps for lunch today.

6. I am grateful for a shopping trip to get some candy and fruit this afternoon.

7. I am grateful for a private WordPress site that I can use as my diary. I still like the iPhone app Day One too, but prefer to type my entries on my computer.

8. I am grateful for horses. Yesterday, some other care facility clients apparently went riding in some type of carriage. While the woman guiding the horses was preparing the wagon, my day activities staff asked whether I could pet the horses and I could! The littles had so much fun!

9. I am grateful for beautiful and nice-smelling flowers.

10. I am grateful for the myNoise and Spotify apps on my iPhone and the ability to listen to beautiful soundscapes and all kinds of music using my AirPods.

Okay, this was easier than I thought it would be. Thank you for reading.

What are you grateful for?

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

#WeekendCoffeeShare (April 18, 2021)

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

#WeekendCoffeeShare (April 4, 2021)

Hi everyone on this chilly and cloudy Easter Sunday. I am rather late joining in with #WeekendCoffeeShare. The reason is that I’m participating in the #AtoZChallenge too and couldn’t find the time to publish another post until today. I just had my afternoon coffee and am going to have a soft drink in a bit, so if you’d like something to drink, that’d be great. Let’s grab a drink and let’s catch up.

If we were having coffee, I’d share how much fun I’m having with the #AtoZChallenge. It is a great way of connecting with new bloggers and challenging myself to write (almost) everyday. For those who don’t know, the challenge is to write posts using each letter of the alphabet on each day of April except Sundays. This is the reason I have time to write a blog post today. My theme is aromatherapy and natural wellness.

If we were having coffee, I would share that this week was rather eventful in general. On Monday, I was very much triggered. I have been having emotional flashbacks a lot, as well as paranoid thoughts about my former clinician reporting me for care fraud if she finds out I’m in long-term care. My staff try to reassure me that I’m not responsible for my care funding. After all, my staff, the manager and behavior specialist applied for me. I am still unsure though.

Anyway, on Monday, when I was particularly triggered, I did an exercise of hitting a pillow to symbolically kick my former clinician out of my life. It was truly empowering!

If we were having coffee, I would also share that, on Friday, I had a treatment review at the mental health agency. My nurse practitioner tried to tell me that I’m already actually processing my trauma with the steps I’m taking now, such as the exercise on Monday. This validated me. My community psychiatric nurse, however, wasn’t fully sure of her role in my treatment and wondered whether she could visit me less frequently. For now, we have decided against this in order to maintain weekly appointments with mental health, alternatingly with my nurse practitioner and CPN.

If we were having coffee, I’d tell you that I finally managed to go to Lobith over the weekend. My cold is still not fully gone, but it’s gone enough that I could see my husband. We had delicious Airfryer fries, turkey and peas for dinner yesterday, as well as pudding for dessert. This morning, we had breakfast in front of the television while watching Hour of Power. It was great!

How has your week been? And how’s your Easter weekend?

#WeekendCoffeeShare (March 12, 2021)

And this time I’m extremely early with my #WeekendCoffeeShare. This week was rather eventful, especially the last couple of days. I just had my afternoon coffee today. You can probably get a cup of coffee, tea or a soft drink from the staff, but I’m so glad this meeting is actually virtual.

After all, if we were having coffee, first I’d share that I’m in room-based isolation. I started having a sore throat yesterday, but wasn’t sure it was the fact that I’d just had a screaming fit or it was actually a symptom of illness. The staff on shift yesterday tried to reassure me. Today though, I woke up very sniffy. I warned the staff, but at first she wasn’t concerned this time either. After she talked to a colleague though, I had to be in room-based isolation. The staff are now wearing protective clothing when entering my room. I’m usually in my room anyway when not walking. For this reason, if I do have COVID, it’s unlikely the other clients will have caught it too, at least from me. The staff though, well, they’ve definitely been at risk.

Thankfully, one of my home’s staff is one of my facility’s appointed testers. She swabbed me right this morning and the test should be at the lab right now. Please all pray that it’ll come back negative.

As for how I’m feeling, well, I’m okay. I’m a little sick to my stomach in addition to the cold symptoms, but overall it’s manageable. I don’t have a fever and my oxygen saturation was normal too.

If we were having coffee, then I’d tell you that I didn’t have as good a walking week this week as I had last week. The reason is that, besides not being allowed out today, I wasn’t allowed outside of the home on Tuesday either. Another client had to be tested for COVID. Thankfully, his test came back negative. I heard this the next morning, but today the staff told me they’d been informed already Tuesday evening at 10PM. I asked the staff to wake me up if this happens with my test too (only if it’s negative).

If we were having coffee, I would share that I had a really productive appointment with my psychiatric nurse practitioner yesterday. The staff who’d seen the PTSD video with me last week, accompanied me. Together, we were able to explain my continuing issues with hypervigilance, flashbacks and emotional dysregulation. I was able to explain about some of my traumas, including traumatic experiences within the psychiatric system. My nurse practitioner was able to validate me from his own perspective as a former psych hospital nurse.

If we were having coffee, lastly I would share that I made a coconut-mango smoothie this morning. It didn’t taste as good as it could have and I’m not sure whether to blame my cold symptoms or the chunks of coconut that weren’t properly blended.

What’s been going on in your life?