Gratitude List (October 8, 2021) #TToT

Hi everyone. I’m still struggling quite a bit, but I’m determined that, if I don’t write to the 31 prompts for the 31-day writing challenge, I’ll at least write a blog post everyday. To cheer myself up, today I’m doing a gratitude post. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for pizza. Yes, again. Last Sunday, like I mentioned in my #WeekendCoffeeShare post, we ordered food from the local Italian restaurant. I ordered a tuna pizza and it was delicious!

2. I am grateful for my staff. As I mentioned several times over the past week, my assigned home staff is on sick leave. Thankfully though, I still do have other staff. I struggle to trust them, but am trying.

3. I am grateful for new essential oil inspiration. Last Monday, I signed up to the Using Essential Oils Safely VIP club for one month. It’s too expensive for me to remain a member longer, but I’m learning all I can while I have the membership. I did put a few new essential oils on my wishlist to buy someday.

4. I am grateful for my bed’s adjustable headrest and legrest. That way, I am able to lie in bed much more comfortably.

5. I am grateful for quetiapine (Seroquel). This is my PRN medication. I’ve needed it quite a few times over the past week and am happy it helps at least a little.

6. I am grateful for the support from my community psychiatric nurse and nurse practitioner. I had a regular appt with my CPN on Wednesday and told her how much I was struggling. She offered to ask my nurse practitioner to call me on Thursday and I reluctantly accepted the offer. He did call and we agreed to discuss possibly upping my topiramate (Topamax), which I take for PTSD symptoms, on Monday.

7. I am grateful for my husband. He is very able to put things into perspective.

8. I am grateful for St. Nicholas candy. The holiday isn’t till December 5, but the candy has been in stores since mid-August and my staff ordered it earlier this week. (Thankfully my fellow clients don’t have the awareness of time to get confused by this, as people of higher intellectual level might.) I had a large handful (well, a small bowlful) of candies this evening.

9. I am grateful I am still able to blog everyday in spite of my distress. I am also so grateful for all the engagement on my blog, particularly on my posts about the mental hospital. Thanks a bunch everyone for your support!

Well, okay, nine things of thankful this time, but it’s alright. What are you grateful for?

Dealing with Anxious Attachment and Attachment Loss

Okay, I’m probably giving up on the 31-day writing challenge. I love the prompts, but right now, they just don’t seem to inspire me. I’m not feeling well at all right now. Haven’t for about a week or more. Like I shared in my post on Sunday, I have been feeling triggered by my staff being on sick leave. It’s not just that, of course. The change of seasons with all its triggers to my time in crisis back in 2007, doesn’t help either. The emotional flashbacks are so bad I’m considering asking my nurse practitioner to temporarily up my topiramate. For now though, I’ll write a little about attachment loss and abandonment issues.

When I was first diagnosed with complex PTSD and dissociative identity disorder in 2010, part of the consultation that led to this diagnosis involved an attachment styles questionnaire. I scored highest on the anxious/preoccupied attachment style. This means that I tend to depend heavily on others. I struggle to admit this, but it is true.

As such, I fear attachment loss or abandonment a lot. Most anxiously attached people tend to seek another relationship right away when one ends. I don’t have any exes, since my husband was also my first boyfriend, but I do notice it in other areas. For example, now that my assigned staff is on sick leave, I’ve already been thinking about who will become my assigned staff if she ends up not returning. Which, in fact, is something I cannot get out of my head for whatever reason.

Anxiously attached people also tend to cling to dysfunctional attachment figures far too long. Again, I don’t experience this in my marriage, but I did experience it in the psych hospital. I had an assigned staff who was rather adamant that I become more independent than I could be, but I accepted her as an authority for far too long. Same with my psychologist.

I, thankfully, left that place. However, I do find that something I read while researching attachment loss for this post, makes a lot of sense: the idea that leaving a relationship on paper doesn’t mean being emotionally detached from that attachment figure. Again, not my marriage, but with respect to my care situation, yes, that’s so me! I still experience vivid dreams (not necessarily nightmares!) about the psych hospital. I also still look up things about my former care agencies, thinking maybe I should go back. I still find myself being influenced by what my past care providers said about me, no matter how harmful and wrong. This may be one reason I don’t generally meet the avoidance criterion of classic PTSD, but am rather the opposite: I find myself drawn to things that trigger me. Now if only I could find a way to truly let go of the emotional baggage I’m carrying with me.

#IWSG: Drawing the Line

IWSG

It’s the first Wednesday of the month and this means the Insecure Writer’s Support Group (#IWSG) is meeting. It doesn’t matter that it’s Blogtober and the 31-day writing challenge is running. It’s already past 8PM as I write this, so I probably won’t have time for a separate post for these challenges. Maybe I’ll catch up with the word prompts from the latter challenge tomorrow. Maybe not.

For those visiting from #Blogtober21 or the 31-day writing challenge anyway, the Insecure Writer’s Support Group gathers each first Wednesday of the month to discuss our writing insecurities, fears, successes and setbacks. There is also an optional question each month.

First, let me share that I did quite well in the writing department over the past month. I published 22 blog posts in September, one more than in August. I also think I did an okay job of broadening my writing horizons. I (re)discovered the diary app Diarium and did an okay job keeping a journal in there for part of the month. Not so much in October so far.

For October, my goal is just to write a blog post everyday in keeping with the challenges I’m participating in. I may or may not go with the 31-day writing challenge word prompts. I don’t really intend to write much in the way of fiction or poetry, but who knows where my muse will lead me?

Now on to this month’s optional question: where do you draw the line with respect to topics or language?

First, I have a clear line relating to language: I don’t swear in my writing. Even when one of my angry alters was writing on here and tried to drop an F-bomb, I censored it out. I do occasionally use bad language on social media. I don’t use profanity though and haven’t for a long time, even before I became a Christian. I in fact find unnecessary use of foul language (which is most use of foul language) quite offputting in my reading too.

With respect to topics, well, since I write mostly autobiographical musings on here, I draw the line where I invade other people’s privacy. For example, when I mention my husband, I make sure it’s in a lighthearted way. I won’t write about our arguments, about our intimate life, etc. I do need to say though that I had to learn to shut up about such topics the hard way. In fact, my husband still likes to jokingly remind me of a post I published on an old, now-private blog in 2008 in which I described my expectations should he and I become a couple officially. In particular, he likes to tease me about calling him a “kid”.

For clarity’s sake, I am not and never was one to describe violence, sex etc. in detail. Even when I still did describe my fights with my parents or my intimate life with my husband, I didn’t use explicit language. Similarly, when I write fiction or poetry, I must say, I generally keep my language quite non-explicit too. I do write about dark topics, but usually by trying to convey the emotions rather than going into detail about the actual facts.

What It Was Like Being a Patient on a Psychiatric Ward #31Days2021 #Blogtober21

I’m still not too inspired to write. Today’s optional prompt for #31Days2021 is “patient”. Obviously, most people will write about “patient” as in the adjective derived from patience. I won’t. I want instead to share what it was like being a patient in a psych hospital.

As regular readers of this blog will know, I spent 9 1/2 years in a mental hospital between 2007 and 2017. I spent my first sixteen months on the locked ward. This is pretty much as I imagined it before I entered the psych system myself: floridly psychotic patients screaming and exhibiting other erratic behavior, staff running around trying to control it. Like I said yesterday, I witnessed people being secluded and being forcibly medicated several times. I was an informally admitted patient, so I couldn’t be subjected to any form of restraint. This isn’t to say it didn’t happen, as I said.

The staff/patient ratio at my ward was around 1:5 during the day. This means there’s not much time for staff to keep regular tabs on what patients are up to if they aren’t kicking up a fuss. I, in fact, at one point got told I would be put into time-out if I “needed more care than we can provide”.

After those sixteen months, I transferred to an open resocialization unit and later another open ward. The staff/patient ratio there was around 1:10, sometimes even less. As a result, patients had to help one another out sometimes.

On the locked ward, I had treatment plan reviews once every six weeks. This was because the ward was basically a crisis intervention/stabilization unit, where officially you could stay a maximum of six months. I must say there wasn’t much in the way of therapy. Of course, most patients admitted to this unit, suffered with psychotic disorders, for which the main treatment is medication. For me, it was decided I just had to figure out a place to go after pulling myself out of the worst crisis and, for this reason, I had mostly contact with the social worker.

On the resocialization unit, I did get psychotherapy. This was where I was diagnosed with (complex) PTSD and dissociative identity disorder in addition to autism. Thing is, once I moved to the other ward, these diagnoses were all removed. It was decided I was just care seeking and dependent and needed to be kicked out of the hospital.

We did have day activities most days on each psych unit. However, not all patients were able to participate. I, for one, usually was not.

In summary, my entire psychiatric hospital stay was one lengthy journey of changing diagnoses, social workers who tried to find me a place to live but had a very narrow view of what I needed, limited nursing support and hardly any day activities. I did start two of my three current daily psych meds while in the hospital. However, I must say, looking back, I hardly made any progress during those 9 1/2 years.

Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21

Today, I’m not feeling too inspired. The optional word prompt for the 31-day writing challenge is “Comfort”. For some reason, probably the fact that I’ve been experiencing a lot of flashbacks to my time in the mental hospital lately, I was immediately reminded of comfort rooms. Then I thought, maybe I could use this post to raise some awareness of the different kinds of special care rooms used in mental health and disability services.

Back in my early days in the mental hospital in 2007, seclusion or isolation was pretty commonly the only intervention used, maybe in combination with forced medication, on disruptive patients. I was initially admitted to the locked ward only because the open ward had no available beds. During my first night in the hospital, I heard a lot of screaming and was later told that the staff “handled it appropriately”. Another patient told me that the screaming patient pretty much lived in the seclusion room. I was pretty scared out of my mind.

Once moved from my parents’ city hospital to my own city’s locked ward, I again experienced seclusion as a witness repeatedly. The ward I stayed on, was the less restrictive locked ward, so it didn’t have isolation rooms. Rather, ours were called time-out rooms, but that didn’t make them any better to be honest.

I experienced one hour forced time-out once, three months into my mental hospital stay. After that though, it was used as a threat repeatedly. This, for clarity’s sake, is illegal: seclusion can only be used to avert danger, not as punishment.

About three years into my mental hospital stay, some wards, particularly locked wards, started deconstructing their seclusion rooms and repurposing them as “comfort rooms”. A comfort room in theory looked nicer, as it had soft toys in it and maybe some special lighting. However, them being repurposed seclusion rooms did mean they still had the vibe of isolation about them. Indeed, the few times I was sent to the locked ward for a time-out once at the open resocialization ward, I spent my time in the “comfort room”. This did not feel comforting at all.

My last psych ward, which I spent four years on between 2013 and 2017, had both a comfort room and a time-out room. This comfort room was indeed actually comforting. There was an essential oil diffuser, a CD player, comfy couch and a few other things. What made it different though was the fact that you couldn’t be locked up into it. If you were to be locked up, it’d have to be in the time-out room.

At the end of my psych hospital stay, I first learned about snoezelen®. This, like I’ve explained before, is a method of helping people with significant intellectual or developmental disabilities by modulating their entire sensory environment. I wanted to experience what a snoezelen® room would be like. My psych hospital had an intellectual disability unit with a room like this, but my psychologist refused to let me visit it, claiming I’m far too capable for this type of activity. I stood my ground and got a place at my first day center with my current agency, which did have a snoezelen® room.

When I was at my first day center with my current care agency, the snoezelen® room was sometimes used as a time-out room for me, in that I was forced to go in there when I was irritable and not allowed to come out. Though the door couldn’t be locked, it did feel intensely triggering to me. It is one reason I still struggle to be in my current day center’s snoezelen® room if no staff is present.

Of course, I must say here that an old-fashioned time-out room has hardly any furniture: just a bed and a stool, both attached to the floor, as well as a toilet made of metal. The seclusion room the screaming patient from my first night in the hospital was locked into, was likely even worse. Comfort and snoezelen® or other sensory rooms are much better. Still, the idea that someone can be put into solitary confinement against their will, is rather disturbing if you ask me.

Ways of Finding Inner Peace #31Days2021 #Blogtober21

Yay, another post today in honor of #31Days2021 and #Blogtober21! The optional day 3 prompt in the 31-day writing challenge is “Peace”. I have been very much on edge over the past couple of days, so I really could be using a sense of inner peace right now. I am not too inspired to write, especially about finding peace. To get some ideas, I reread my list of activities that give me inner peace, which I wrote about three years ago.

The activities could be divided into several categories. Some are spiritual in nature, such as meditation. I wasn’t a Christian at the time, so I’d put prayer and Bible reading in this place now.

Others are physical, such as walking or exercise. I honestly didn’t think of exercise as an activity to give me inner peace right now.

Then there are the sensory activities. I have a lot more of those available to me right now than I had back in 2018. For example, now that I have a music pillow, I can not just listen to soothing music with headphones on or through speakers in my room, but through speakers integrated into my pillow. In addition, I obviously have my essential oil diffuser and my weighted blanket now, as well as still having my sensory cat soft toy and several other stuffed animals. I can almost create a sensory room in my own bedroom.

Writing is an activity that still helps me. So does talking to my staff. When I struggle with worries, writing them out just for myself, will not usually be enough, but sending an E-mail to my staff is.

Lastly, there are of course mental strategies for dealing with distress, such as radical acceptance, opposite-acting or “worry time”. Unfortunately, I haven’t found many cognitive approaches to finding inner peace helpful at all.

What strategies or activities help you find inner peace?

#WeekendCoffeeShare (October 3, 2021)

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

Why I’m Content in My Current Care Facility #31Days2021 #Blogtober21

Last Thursday, like I mentioned before, I had my care plan review here at the long-term care facility. It was my first one, even though I’ve been living here for two years, because last year’s got canceled due to COVID. As we were discussing my progress over the past two years and my wishes for the future, I said that I’m about 95% sure I want to stay here. That’s huge for me, as I’ve been constantly on the lookout for another place to move to particularly over the past year.

This brings me to today’s prompt in the 31-day writing challenge: content. I at first wasn’t sure what to write about on this word. I mean, I wanted to write why I’m content living here, but somehow it felt kind of off. Then I read Lesley’s contribution to the challenge, Contentment Without Complacency, and realized that being content where you are doesn’t mean there’s no ground for improvement. So, with no further ado, I’m going to share why I’m content living in my current care facility.

First of all, I love the way my staff support me. As regular readers of this blog will know, I’ve had quite the journey through the care system. I resided in a mental hospital for 9 1/2 years, where there was constant pressure on meeting goals and getting better. Before that, I lived on my own and, before that, in a training home. As the name suggests, it was heavily focused on independence training.

For those not aware, my current care facility primarily caters to people with an intellectual disability. All other clients in my specific home have severe to profound intellectual disabilities. For this reason, my staff are used to helping them with everyday activities such as mealtimes, personal care, etc.

They are also used to clients needing staff to realize that correcting challenging behavior will not be effective. Whereas in the mental hospital, I used to be often left to my own resources if I’d done something self-destructive, now my staff provide me with affectionate care. This might be seen as reinforcing the behavior, but in my experience, quite the opposite is true.

In addition to liking my staff’s care approach, I like my fellow clients’ lack of social expectations of me. One of my fellow clients will occasionally come to my room asking me to wish him goodnight, but other than that, the clients hardly interact with me. One wish for the future that I voiced at my care plan review, is more interaction with other people, particularly those of higher intellectual level. I do have a couple of friends in other care homes that are part of the complex, whom I talk to when going to the day center or when outside. I however am grateful that I don’t live with these people 24/7.

I also like my room. Some staff call it an apartment, since I have my own bathroom and small kitchenette. I also have my own balcony. I honestly haven’t had a better room in any of my previous places in the healthcare system.

Overall, the reason I’m not 100% sure I want to stay here, doesn’t seem to have to do with my facility itself. It is rather related to my own anxieties and insecurities. Of course, things could always be better, but that doesn’t mean I’m not content exactly where I am right now.

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

Total Blindness

A few weeks ago, the topic of MindloveMisery’s Menagerie’s Tale Weaver was the loss of the sense of hearing. I was secretly hoping for a tale weaver on its visual counterpart to come up and my wish was granted today: today we’re asked to weave a tale about a character who’s blind. It doesn’t necessarily have to be fiction or so I believe.

As most of my readers know, I have always been legally blind. I at best had around 20/800 visual acuity in both eyes, although I claimed to have 20/400 for a long while. By the time I was eight or nine and was pretty much given up on vision-wise by my doctors and parents, I had roughly 20/1000 vision in my left eye at best and my right eye was even worse. For those who have no clue what visual acuity means in daily life, I was able to see someone raise their hand at one meter’s distance but not count their fingers.

Even so, I didn’t consider myself functionally blind until I was thirteen and transferred from special education to a mainstream setting where I was the only person with a visual impairment. There, there was no point in accentuating my tiny bit of vision, since compared to my peers, I was as blind as a bat.

To this day though, I find it hard to accept the fact that, in essence, I’m now totally blind. I only started considering this possibility after my most recent visual screening at the blindness agency, which revealed that I only have a small window of light perception left in the central part of my left eye’s visual field. For those unaware, light perception is the ability to detect the presence of the eye doctor’s flashlight, but notably not the ability to detect what direction it is coming from (that would be light projection). In other words, I am no longer able to tell where a window or other light source is located within my visual field or even whether there is a light source present if I’m not directly looking at it.

Since I always had some residual vision, no matter how little, I have always wondered what total blindness would look like. One day in fifth grade, one of my support staff told us about having been blind for two weeks due to some disease and it not looking like darkness at all. Other blind people have asked rhetorically: “Does your forehead see darkness?” No, of course it doesn’t.

Like I said, I was given up on by the eye doctors when I was eight or nine. For this reason, I didn’t have regular visual check-ups. I had one in 2005 at the blindness rehabilitation center and then again in 2013 in preparation for cataract surgery. In 2005, I had light perception and some level of environmental light awareness in both eyes. By 2013, I had gone completely, totally blind in my right eye. However, I was unaware of this until the optometrist tested my light perception in both eyes.

Since being made aware that I’m totally blind in one eye, I’ve tried to cover my left eye to see what total blindness looks like. I seriously don’t get a clue. In fact, the closest I come is that blindness, indeed, is the absence of any sight at all, including the sight of darkness.

This does make me think that, when (I’m pretty sure it’s “when”, not “if”) I’ll have lost that last tiny bit of light perception in my left eye, I won’t be aware of it at all for a while. It terrifies me.