Gratitude List (July 30, 2021) #TToT

Hi all, happy Friday! I’m joining Ten Things of Thankful (#TToT) today with a gratitude post. Let’s get started.

1. I am so grateful my benefits arrived. Oh well, I spent a significant amount of money already on crafting supplies and my yearly premium subscription to Day One, a diary app. I have once again resolved not to make unnecessary expenses for at least a week. I am however grateful that, even if I do end up spending some money, I won’t go broke anytime within the foreseeable future.

2. I am grateful my staff try to find me things I need or want for free or at a heavily discounted price. For example, one staff was able to get a music pillow for just €1. Another staff gave me some cookie cutters and ziploc bags she didn’t use and her daughter’s old duvet cover. Oh, it feels off to say this right after I’ve told you about my spending my benefits money on crafting supplies.

3. I am grateful to retain my creative mojo. I have really been loving doing some crafts lately, particularly polymer clay and some jewelry-making too.

4. I am grateful that my creative juices flowing means I have something else to talk about online besides my disabilities and health conditions. I am truly loving perseverating on polymer clay in particular.

5. I am grateful for organized storage shelves. Okay, I think I decluttered them a month or so ago already, but with my new crafting supplies, I had to do it again. I’m really satisfied with the space I created without even too much throwing out.

6. I am grateful for pasta salad. My day activities staff and I made this for lunch on Tuesday and there was still some left on Wednesday.

7. I am grateful I haven’t gained any weight in the past week despite not walking as much and despite the pasta salad and other treats. In fact, I lost 200 grams.

8. I am grateful for a nice fill-in community psychiatric nurse. My regular CPN will be on vacation when I was originally next supposed to see her in two weeks, so the other one will fill in. She joined me and my regular CPN for our appointment on Wednesday and she seems nice.

9. I am grateful for a nice new student staff. She is already older, so it’s easier for me to trust her than the young interns.

10. I am grateful my husband is now fully vaccinated. He got his second shot yesterday and he seems to be doing okay.

What are you grateful for?

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?

#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 (February 21, 2021)

Happy Sunday everyone! I’m rather late joining in with this week’s #WeekendCoffeeShare, but better late than never I’d say. In addition to coffee, today we have two types of soft drinks in the fridge, both partly lemon-flavored and neither of which I like. If you’d prefer cold water, I totally get you. Unfortunately, the water hasn’t been in the fridge that long yet, so it’s not super cold. I hope you enjoy whichever drink you choose anyway. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d ask about your weather. Is yours as crazy as ours? Last week, remember, we had snow and temperatures below freezing. Now, the weather is really spring-like, with the temperature having risen to 17°C here in Raalte and to 19°C in some places in the south of the country. Tomorrow we might get even warmer weather.

If we were having coffee, I’d share I went to Lobith for the week-end. My husband and I got Domino’s pizza yesterday. The one I got, curry kebab, was good, but not as great as I’d expected.

On the way back to Raalte, my husband had a radio station on playing summer hits to celebrate the warm weather. I now have the Venga Boys’ Boom, Boom, Boom stuck in my head and I actually don’t mind. I don’t think anyone who isn’t a child of the nineties can truly appreciate the beauty of this music. 🤣

If we were having coffee, I’d share that I still don’t feel back to my normal self. My magnesium, which I started last week for constipation, has been upped. I’m struggling to decide whether this was a good thing or not. Guess I’ll give it a few more days to see how I do.

I’m also still pretty fatigued and easily overloaded. On Thursday, I landed in a minor crisis due to it. Unfortunately, my community psychiatric nurse didn’t work that day and the substitute couldn’t help me much at all. He offered to ask my CPN to call back on Friday, but I think she may not have received the memo. By then though, I was feeling somewhat more functional.

If we were having coffee, I would tell you that a fellow client and staff cooked spaghetti for us today. It was good.

If we were having coffee, lastly I’d share that I made a lip scrub with my one-on-one staff this evening. I used coconut oil, sugar and vanilla extract. Unfortunately, it didn’t turn out to be the consistency I liked. However, it did make my lips feel soft.

What’s been going on in your life?

Profession or Identity? #Write28Days

Today I finally remembered to check out the #Write28Days Facebook group and jump back onto the challenge bandwagon. The prompt for today is “Profession”.

I immediately thought of all the career paths I had envisioned for myself as a teen. When I was sixteen, I was planning on becoming an English major in college, choosing to specialize in American studies and was sure I’d leave for the United States in my third year. I actually half-joked that I’d obviously find employment there and never come back to the Netherlands.

Now of course I never even made it to being an English major. I never made it to my third year in college either and haven’t been to the United States as of yet. I’ve never been employed, in fact.

For some time, I listed my old blog as my place of employment on Facebook. Now because I’m not keen on my family reading my blog, I no longer list it on my personal profile. I don’t have work listed on my FB profile at all.

Today, I was discussing my personal strengths profile, which the mental health agency is supposed to have on file for each client, with my community psychiatric nurse. It scared the crap out of me. In the plan, you’re supposed to write about your former abilities (before becoming mentally ill or whatever), your wishes and ambitions and your current abilities. I immediately thought big, thinking that since I used to go to university before my autistic burnout and lived with my husband before coming to the care facility, I should probably want to go back to these. My nurse said I can think small too. I later thought of the fact that I used to be stable on a much lower dose of daily medications and would really like to go back to a lower dose of my antipsychotic at least. That’s a valid ambition too. I don’t really need to find a profession.

In fact, I am also reminded of last week’s Hour of Power show, in which the preacher talks about one’s title vs. one’s testimony. In the Dutch show, Carola Schouten talked about her title as the minister of agriculture and vice-prime minister. She contrasts this with her identity in Christ. I love this and felt an interesting connection to her, even though with respect to profession, she is infinitely more successful than I am. With respect to identity though, we’re both children of God.

Another Appointment With My CPN

Today, I had an appt with my CPN again. I can’t remember all the details, but I did tell her that I had had a breakdown on Sunday. I was completely honest, sharing that I had seen and heard things that aren’t there. It was as if something was truly telling me I’m a monster and everyone will leave me. Then I saw some form of Heavenly light. I can’t describe it really and it wasn’t very vivid even then, but it was more than mere wishful thinking.

My CPN encouraged me to discuss this with the psychiatrist when I see her on the 22nd. I really hope she can help me. My husband later asked me whether it was truly psychosis or a panic attack. I don’t think I was full-on psychotic but my perceptions and thoughts were definitely headed that way. My CPN agreed.

I can’t remember whether I told my CPN, but I had these thoughts and perceptions once before. Well, a few weeks ago I had them too, back when this depressive stuff all started, but then it wasn’t that bad. Back in December of 2009, I think it was even on Christmas, it was. I had run off from the psych ward in the snow. I picked up snowballs and somehow was convinced they contained drug needles. I wasn’t depressed at the time, just batshit crazy. It lasted only for a few hours though, but came back several times within the next few months, only disappearing when I was put on Abilify.

Now I’m pretty pessimistic. After all, I’m already on the highest dose of both Abilify and the antidepressant Celexa. (I mention this because I’m pretty sure I’m depressed, whether clinically or not.) I’m hoping though that the psychiatrist can put me on some PRN medication other than lorazepam, which I can use if I fully break down again. I know I have had experience with Phenergan (promethazine, a low-potency neuroleptic) and that worked great when I was on no other medication but not at all once I was on my current regimen. Maybe the psychiatrist can prescribe me something similar but different.

I also talked to my CPN about the incessant crying. She told me this may be useful. After all, I learned from a young age on to hide all negative emotions except for frustration (because I couldn’t hide that). In fact, I was told that I was “too quick to anger”, but this was used as an excuse to force me to repress every emotion other than a smile. I hadn’t been able to cry unless I was angry first until only a few months ago. As such, my CPN reasoned that I might have a lot of catching up to do.

A Profound Appt with My CPN

Yesterday I had another appt with my community psychiatric nurse (CPN). At first, we went into how I’m doing at the moment. Then my CPN scheduled some appts for me with my nurse practitioner. Last Monday, after all, he and the behavior specialist from my care facility had finally come to the conclusion that I need to do some work on stabilizing myselves and developing inner cooperation before I can do EMDR or another form of trauma therapy. At first, the secretary said the first appt she had available was late December. It turned out to be December 17, so that’s pretty early considering how long I’ve been waiting already.

Then we got to discuss some issues relating to my diagnosis or the lack thereof. These were mostly theoretical, since I have no idea what my current diagnosis is and I really don’t care. I mean, the most recent treatment guidelines here in the Netherlands for complex dissociative disorders, aren’t suited to me (or most plurals, honestly), so I have no reason to want such a diagnosis. All I want is help in getting the inner turmoil under control.

Then I somehow got to mention my former psychiatrist’s comment when first considering assessing me for DID/OSDD in the summer of 2018. She held both of my hands and said: “You have just one body.” Then she went on to explain that, while she was holding our hands, none of us could put our fingers in our ears and pretend not to listen.

We then repeated this exercise. A staff always attends our appts with mental health with us. She now held both our hands and said that we can stay at the care facility. Someone asked cautiously: “Even if I need more help than I get now?” She then reassured us that yes, even if we need more help, we can stay here.

Then the staff asked our CPN what she’s supposed to do when we openly switch, as we had the day before. My CPN seemed not to know, so I suggested she do not elicit it, but do not fight it when it happens either. After all, when she insists that “Astrid” come back, this may create some trouble since “Astrid” is either everyone or no-one at all.

I really hope our nurse practitioner isn’t going to insist people only talk to “Astrid”, as the current guidelines on DID/OSDD seem to suggest as far as I know. I mean, we are okay all listening to the body’s name and won’t sign our names on E-mails or the like when it’s not appropriate, but one of our main issues is that there is no host who somehow “owns” the others. As such, the daily living parts or apparently normal parts or whatever don’t have access to every bit of information needed to cooperate.

Gratitude List (November 21, 2020) #TToT

It’s been forever since I last did a gratitude list. I just checked and it’s been five weeks. These weeks have been incredibly hard. I am really struggling to stay positive. I am going to try to come up with some gratefuls anyway. As usual, I’m joining in with #TToT. I’m typing this post on my iPhone, which I hardly ever do nowadays, so sorry for any typing glitches.

1. My husband! Even with our not living together and only talking on the phone most days, he tells me many times a day that he loves me. I am struggling to feel such a powerful emotion due to my current state of depression, but I’m trying to love him back.

2. My faith. My husband, who I always thought was a strong atheist since leaving theology school, has taken a renewed interest in Christianity and this has encouraged me. Today, he recommended a book called You Are Beloved. I am a very progressive believer, but I’ll definitely give this book a try.

3. My staff. They have been so kind to me despite my challenging behavior.

4. My community psychiatric nurse. She has been very helpful.

5. Pizza. Okay, on to the superficial stuff. My husband and I ordered a delicious pizza today. No, not from Domino’s and I must say this one is better!

6. Cheesecake. Two of my fellow clients had their birthdays this past week and another client got to help the staff make cheesecake.

7. Homemade noodles. That same client made those for us on Monday. He used minced meat instead of chicken, but still it was so delicious.

8. Lots of walking. So far this week, I nearly surpassed my step record from last week. I didn’t get in as many minutes in active heartrate zones, but that’s okay.

9. The ability to write and blog. I am not writing as much as I’d like, but at least I’m still writing.

10. A good night’s sleep last night. And yay for no nightmares that I can remember!

What have you been grateful for?

Appointment With My CPN

Yesterday, we had an appt with our community psychiatric nurse (CPN). I can’t remember all that we discussed. I went into some detail about our sadness and overwhelm over the last few weeks and explained that we had signed a letter to the manager requesting more help.

I tried to ask my CPN to get me an appt with the psychiatrist to discuss my meds, as my overload and irritability are increasing. While I was trying to get this out, I constantly heard someone in my mind say I shouldn’t be asking this as it’s attention seeking or drug seeking or whatever. I don’t even want a med increase per se. In fact, I’m at the maximum dose for both my antipsychotic and antidepressant already. I might want something to help with sleep and especially the restless dreams/nightmares. I feel intense shame about discussing that though, as my nightmares aren’t your standard PTSD nightmares. In fact, my trauma isn’t your standard PTSD trauma.

That is another issue I’m facing. Yesterday, I read an elementary school friend’s story of child abuse. It triggered me to an extent, because I can relate. Still, my trauma wasn’t that bad. She is a child sexual abuse survivor. I am not. Though I endured some physical abuse, it wasn’t that which caused my complex PTSD and dissociative symptoms. The most significant trauma in my life was the emotional abuse and neglect.

Of course, I just told another survivor that childhood emotional neglect and emotional abuse can cause C-PTSD and dissociative disorders too. In fact, dissociative disorders are largely attachment-based, so anything that disrupts normal attachment, can cause it. Still, to apply that knowledge to myself, is quite a bit harder.

I eventually did ask my CPN to refer me to the psychiatrist. My nurse practitioner would normally prescribe my medication, but he does consult with the psychiatrist also. Besides, I’ve never even seen the psychiatrist. So my CPN was more than happy to get me an appt.