#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.

Early November 2020 Health and Wellness Update

Like I said a couple of weeks ago, I had a physical health check-up at the mental health agency. That wasn’t good. That is, my blood pressure was high and so was my weight. Even though the nurse said I might not have gained any weight compared to the last time I stepped onto the scales, as each scale is different, I was pretty alarmed. So was my husband. He asked whether I could be put on a diet. Well, no-one can force me, but I did agree on a food plan with the staff.

Now we’re a little over two weeks on. I didn’t get my blood pressure taken today, as my GP recommended we wait three months and then check it everyday for a week. I did get weighed in though. And guess what? I lost 1kg compared to the last time I stepped onto this scale in early September and 3kg compared to the health check. Only two more kilograms to go and I’m no longer obese.

Overall, I’m doing okay sticking to the food plan. I eat bread rather than crunchy muesli for breakfast, make sure I eat enough veggies and fruit and drink at least 1.5 liters of water a day. That plus coffee, which contrary to common belief does hydrate the body to an extent, and occasionally green tea. I do usually eat a cookie with each coffee break, while my food plan says I can only have a cookie with my evening coffee. However, each day that I skip a cookie, I’m proud of myself for making a healthy food choice. Same each morning with breakfast, which is a real struggle, as I’m not a bread person.

I also make sure I get in enough physical activity. Last week, I felt really lazy, but, according to my Fitbit, still got more than the recommended 150 weekly minutes in active heartrate zones. This week, so far, I got 341. I broke my personal step count record yesterday by getting in over 16K steps. I don’t go on the elliptical as often as I’d like, but that’s because after walking two to three times a day, my legs are often tired.

In other health-related news, I talked to my CPN from mental health about sleep on Tuesday. I usually get enough sleep, but I have very vivid nightmares most nights. They aren’t your standard monster-chasing-me nightmares. In fact, most revolve around my sense of safety here at the care facility. My CPN may talk to my nurse practitioner about it. She said I might benefit from medication to help with this. Thankfully though, having discussed the issue has already calmed things down a bit.

#WeekendCoffeeShare (August 30, 2020)

Hello all. I’m not feeling like writing much right now, but maybe by just starting I’ll get somewhere. I just had a cup of coffee and a soft drink. I think the flavor soft drink I had is gone now, but we might still have coffee. As usual, I’m joining in with #WeekendCoffeeShare. Let’s have some drink – there are probably other soft drinks out in the fridge – and let’s catch up.

If we were having coffee, I would ask you how your weather’s been. Ours is okay. Not too hot, not too cold, not too rainy and not too dry. I’ve been out taking regular walks most days. I don’t think I shared this in this type of post before, but come September, I’ll be starting a sponsored physical activity challenge called Steptember. It’s for the cerebral palsy charity. The idea is to get in 10K steps everyday – or as many days as you can get. I find it quite a challenge – both the sponsoring part and the step goal. However, I’m trying.

As regular readers might know, my Fitbit activity tracker broke down some months ago. I’m now using my iPhone’s built-in movement detector to count my steps. That works okay. I did reach the 10K steps on both Thursday and Friday.

If we were having coffee, I would tell you that I spent most of the week escaping into books. I’m okay, but I do need some escapism right now.

If we were having coffee, I would tell you about the appt with my community psychiatric nurse on Tuesday. It went pretty well. We did go in some depth considering her role as just a nurse. She also told me my nurse practitioner was going to refer me to the specialist center on developmental disorders (autism and ADHD). If the information on the website is correct – which I’m not sure of, as the date of the last update was August 27, 2019 and I’m not sure that’s a typeo -, the wait is several months for an intake interview and then another six months for treatment. I’m not sure that’s just for the inpatient units though, as I know that the workhome is part of the center too. That one has a wait of several years due to it being a living facility.

In any case, before I knew there’s likely a long waiting list, I had all kinds of worries and thoughts about it. I mean, I’m hoping to eventually get trauma treatment and lowering my antipsychotic is still on the agenda too. However, I’m very scared either of these could destabilize me. Then again, I just don’t feel my life right now is all it can be.

If we were having coffee, lastly I would share that I spent the week-end in Lobith. It was good. My husband made us hamburgers with cauliflower and baked potatoes, all out of the freezer. I really didn’t taste that about the cauliflower and the burgers and potatoes were delicious too.

As usual, we spent some time together on the couch and some time apart in the two bedrooms. I have a desk in the master bedroom and my husband has his desk in the other bedroom. That one is also used as our cat’s place though.

Then this afternoon, my mother-in-law came to pick me up and drive me back to Raalte. There, I arrived just about in time for my dinner to still be shoved in the oven.

How have you all been?