#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?

#WeekendCoffeeShare (March 7, 2021)

Okay, I’m so very late with my #WeekendCoffeeShare post for this week. Sorry! I was in Lobith yesterday and, though I returned already before noon today, I really didn’t find the time to write. I have so many things I want to write about and yet none come out clearly onto the screen. So let me just ramble. There might still be coffee here or you can grab a soft drink. Let’s chat.

If we were having coffee, I would tell you that I’m still struggling with hypervigilance and emotional flashbacks. If anyone is familiar with complex PTSD, I’d love to know your tips for dealing with these. I mean, I’m constantly on high alert and on the edge of flight.

It doesn’t help that I have no idea what triggered me. I mean, could it still be the dentist’s appointment at the main institution last Tuesday? I’m pretty sure that’s not it. In any case, I’m trying to cope the best I can.

If we were having coffee, I’d share that, on Friday, I showed a staff a case video from the Center for Consultation and Expertise on a woman with severe (complex) PTSD. It helped clarify some of the issues I’m facing.

If we were having coffee, I’d share that I had a bit of a meltdown when I came back to the care facility from Lobith early this afternoon. I wasn’t happy about the student staff doing my one-on-one this evening. Thankfully though, the staff reassured me that the student or I could call for another staff if needed. It wasn’t needed ultimately.

If we were having coffee, I’d then try to lighten the mood by talking about the weather. It’s cold here for March, with tempts dropping below freezing at night. Still, it’s quite sunny. The weather forecast predicts rain for all of the upcoming week though.

If we were having coffee, I’d share about my husband’s great chicken wraps that he’d made me yesterday. They were especially great with tabasco sauce in them.

If we were having coffee, lastly, I would proudly announce that I got in over 10K steps five days in the past week and over 12K steps on three of those. Today and yesterday, I didn’t do so well, but I still got in over 5K steps each day. That’s what my husband says the scientific community has calculated as the real recommended minimum step count each day. My husband said the 10K mark was made up by the inventor of the activity tracker. Regardless, I did average over 10K steps over the past seven days. Unfortunately, my sister still beat me on Fitbit. Oh well.

What’s been going on in your life?

Gratitude List (March 5, 2021) #TToT

It’s Friday again and I badly want to write. I’m feeling quite distressed by emotional flashbacks right now. To turn my mood around, I thought I’d do a gratitude list again. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful to live in a care facility. I feel very insecure about my living arrangement right now, but my staff reassure me that I don’t have to leave. I am so extremely grateful for my staff’s patience with my anxiety!

2. I am grateful my staff make sure someone comes to sub when a staff is ill or has other obligations. Today, my day activities staff had to leave unexpectedly at around 1PM, but the staff made sure someone came to take her place. In the psychiatric hospital, we’d just be left with fewer staff if this happened.

3. I am grateful for chicken Siam. A fellow client and staff cooked that up for this evening and I totally love it! This client can’t have the cashews that normally go in, so there’s more left for me. 😉

4. I am grateful I got my second shot of the vaccine yesterday. I am also grateful that I didn’t experience any side effects. In fact, I hardly even felt the needle go in, so worried at first that they were doing something wrong. I try to trust that I got the vaccine correctly though.

5. I am grateful for God’s presence in my life. I have been extra involved with my Bible reading lately. I am grateful I finally figured out how to bookmark, highlight or copy verses in the YouVersion app and how to add notes or prayers.

6. I am grateful for all the lovely treats the staff who left our home last week, left for us. We had winegums, candy bars, ice cream and more.

7. I am grateful for no rain this week. It’s cold outside, but usually sunny. For this reason, I was able to get in over 10K steps each day of the week so far (not counting today, but I will later).

8. I am grateful I’m done with dentistry appts for at least another several months. My experience at the dentist’s was pretty bad last Tuesday, by no fault of the dentist. Let me just say I’m glad I’ve got it over with.

9. I am grateful I got to talk to my parents on the phone on Monday and that they are well. I had a nice chat. I will need to phone my sister later too. My parents were going to visit her and her family on Tuesday.

10. I am grateful for the ability to chat to other clients, including those from other homes within my care facility. I chatted some with a guy from the home next to us while we met outside of the day center a few days back. We used to go on walks together with the staff and also have coffee at each other’s homes, but due to COVID restrictions we no longer can. I am looking forward to being able to hang out more with him and other clients once the restrictions are lifted.

Wow, this turned out much better than I expected and it certainly did help.

What are you 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.

If The Staff Saw My True Nature…: Reflections on Not Belonging

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

A Timeline of My Mental Health

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

Healing From Childhood Trauma: Progress I’ve Made #AtoZChallenge

Welcome to the #AtoZChallenge, day eight. It’s already nearly 9PM as I start writing this post. I wasn’t home from day activities till 5PM, then had dinner and then drove 50 minutes one way with my husband to pick something up he had bought. On our way back, we stopped by McDonald’s, which was fun.

Anyway, today’s theme is healing. I was inspired to choose this theme by yesterday’s post, in which my final goal was to heal from my childhood trauma. Let me share today how far I’ve come on my journey.

My trauma-based symptoms first became fully apparent in 2009 or 2010. I had moved from a locked acute psych unit to a resocialization unit in early 2009. Once I developed trust in my staff, I apparently felt more ready to uncover the trauma-based conditions I’ve been living with all my life. You see, my trauma started early on and is in some respects ongoing.

When I started to open up about my symptoms, it still took a long time for them to be diagnosed as first dissociative identity disorder and PTSD and later borderline personality disorder. Borderline personality disorder shares a ton of symptoms with complex PTSD and I think that’s what I have.

I have never been in formal trauma therapy. The reason is that, first, it was hard to find a therapist with expertise on DID. Once I’d found one, my diagnosis had been changed and I was assumed to be making it up.

As a result, I’ve done most healing on my own. I got the book Coping with Trauma-Related Dissociation as soon as it came out in 2011. I worked through some of it on my own, but that wasn’t helping much. Talking a lot about my experiences was.

After I’d been talking through my experiences for a long while with my resocialization unit staff, my classic PTSD symptoms started to fade. Unfortunately, they’ve been back to an extent lately. However, my emotion regulation issues are a lot less pronounced.

I still have dissociative symptoms. Accepting them and validating my alters has helped me manage these symptoms.

Since I experience ongoing stress that reminds me of my trauma, I don’t expect to find the peace to fully heal anytime soon. However, I really hope I can continue to make progress.

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

Lessons Learned from Regret #Write31Days

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.