Loneliness Comes From Within: Some Reflections

I am still struggling badly. I have been having flashbacks of the time when I lived on my own in 2007. When I told my husband this tonight, he asked whether any traumatic events happened there. Not really in the classic sense of the word, but I did suffer intensely. The “cage”, as I called my apartment, was a filthy, dark and gloomy place. Neither I nor anyone else had ever thought of making it into a home.

I was intensely lonely during the three months that I lived in that place. Nonetheless, people did reach out to me. I was in touch with several of my fellow students in the linguistics program at university, one of whom lived in my housing complex too.

When I mentioned this, my husband said that loneliness rarely comes from the environment. It wasn’t that no-one cared, as had been the case during most of my high school years. In fact, multiple people reached out to me, but I was closed off to contact with others. I was so convinced that I was unloveable that I didn’t attempt to form genuine bonds with people.

Sadly, it’s still mostly this way. Just a few days back, I was telling my husband that all caring staff eventually leave, referring to the idea I’ve gotten in my head that my assigned staff is not coming back. Indeed, a number of staff have left in the past or told me they had to distance themselves from me due to my behavior. However, a number have stayed too. In particular, my support coordinator from when I lived with my husband, stuck by me till the end.

Of course, staff/client relations are different from friendships. Staff might leave for reasons that have nothing to do with me. Others will come in their place, sad as it may be. Friends though will not necessarily be replaced. And that’s where it hurts more: I feel intensely incompetent at forming friendships.

I mean, though I did have contact with fellow students and people in my housing complex while living on my own, I mostly sucked up their energy. I feel intensely sad about this. I still feel like I’m not able to make friends ever at all. However, there is hope. Now that I (hopefully) am in a stable living situation, I may be able to build on some genuine friendships after all. I already consider some of my fellow clients my friends. I don’t need to rely on them for support, as I (hopefully) have my staff for that. That should be a relief.

#WeekendCoffeeShare (October 9, 2021)

Hi everyone on this sunny Saturday. Well, it’s not sunny anymore, as the sun has just set, but it was sunny all afternoon. Today I’m joining #WeekendCoffeeShare again. I’m in Lobith and I usually have tea in the evenings here, but if you’d like a cup of coffee, I’m sure my husband can make you one too.

If we were having coffee, I’d share that this week was all quite meh. I’ve said this a couple of times already over the past week. It’s all just one endless stream of sadness, triggers and the resulting flashbacks.

I’m pretty sure I’ve decided I’m going to ask my nurse practitioner to up my topiramate on Monday. I hope this means I won’t have to wait for my next weekly med refill on Saturday to get the upped dose. Of course I know meds won’t solve everything, but I can’t think of anything else right now.

If we were having coffee, I would share that I did find some inspiration in the soaping and essential oil departments again. Yesterday, I even managed to make a simple butterfly melt and pour soap.

If we were having coffee, I would tell you that I also managed to get in more steps this week than last week and that’s not counting tomorrow yet. Okay, last week was quite a bad week in the walking department, but oh well, let’s be thankful for the little things.

If we were having coffee, I would tell you that my orthopedic footwear finally returned from whoever (Shoe or AFO Guy) was working on it earlier this week. It finally seems to be okay now. Not great, but okay. I have at least been able to walk some 25 minutes on the footwear without too much pain and am pretty sure it needs getting used to as well.

If we were having coffee, I would repeat how grateful I am for all the lovely comments on my blog. Like I mentioned last week, I’m participating in #Blogtober21, though my only goal right now is to publish a blog post everyday. I’m no longer going with prompts. Today, I almost wouldn’t have written a post, as I’m with my husband in Lobith like I said and this usually means I can’t concentrate. However, I didn’t want to break my streak.

If we were having coffee, lastly I would share my husband cooked me a delicious rice and meatballs meal this eveningn. Neither of us was full after it, so we ended up ordering something else afterwards. However, the meal was very tasty!

How have you been?

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.

#WeekendCoffeeShare (May 15, 2021)

Hi everyone on this partly cloudy but thankfully not too rainy Saturday! Today I’m once again joining in with #WeekendCoffeeShare. I just had my afternoon coffee for today, but there’s probably still some left. Or you can grab a cup of tea or a soft drink. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been rather eventful. It started out with my psychiatrist’s appointment on Monday. Like I said, I was overcome with disbelief at how seriously the psychiatrist and my nurse practitioner took me.

Over the entire week, I’ve had a lot of emotional and visual flashbacks related to my trauma. I’ve also experienced some form of near-psychotic-like symptoms where I confused the past with the present. My inner life feels like a rollercoaster ride of dissociation, anxiety, paranoia and more. I really hope that I can start the topiramate soon and that it will help. I did try to take my PRN quetiapine a few times, but it hardly really helped.

If we were having coffee, I would tell you that my mother-in-law visited me on Tuesday. We went for an hour’s long walk and got fried fish at the marketplace near my neighborhood supermarket on the way back. Unfortunately, it started to rain just when we’d finished our fish, before we were back to the care facility. Thankfully, the rain wasn’t too heavy.

If we were having coffee, I would tell you that, despite not meeting my step goal of 10K for several days so far, I’m still on track for this week. The reason is the fact that, early in the week, I surpassed my goal. I even got in 17K steps on Wednesday.

If we were having coffee, I would tell you that my sister had her birthday on Thursday. I sent her a present (a book) already last week, but she wouldn’t open it till her actual birthday. My mother posted a picture on my sister’s FB of the card she’d sent announcing my sister’s birth. It showed me as a toddler and my sister as a newborn. My sister commented with a recent picture of my niece in which she looks just like me in the card, saying that toddler (leaving it to interpretation whether she meant me or my niece) is more beautiful.

If we were having coffee, I’d tell you that I’m seriously considering buying Apple Airpods Pro. I really want in-ear earplugs so that I can listen to soundscapes or soothing music when going to sleep. I also badly want them to have noise-canceling functionality.

Unfortunately though, I haven’t had the announcement from the benefits authority of my getting my annual vacation allowance, which should be in my bank account later this month. I had originally planned to buy the Airpods (and maybe an Apple Watch too) for that money. However, with the Braille display expense scare last week, I’m a little more careful now.

If we were having coffee, I’d share about the online magazine on cerebral palsy I found out about earlier this week. CP Netherlands created it and it’s lovely. I read in it, among other things, about a radio news reader who has CP.

If we were having coffee, lastly I’d tell you that my AFO broke sometime today. I have no idea how it happened, but my staff saw it when I wanted to put it on this afternoon. Ugh, I hate it when my adaptive equipment breaks down.

How have you been?

An Unbelievably Good Psychiatrist’s Appt Yesterday

Yesterday, I didn’t blog, because I was overwhelmed and frustrated all evening. The frustration is a topic for another time. My overwhelm was mostly positive in a way, in that I’d had a psychiatrist’s appointment in the morning and was overcome with disbelief at how understanding she was. That in turn triggered feelings of disbelief at my current life situation in general, which triggered memories of trauma.

I’d seen this psychiatrist once before, last December. Then, she had switched my PRN medication from lorazepam to quetiapine. Now was the time to discuss whether this was the right medication for me. I wasn’t sure to begin with. I explained truthfully that, while the medication helps somewhat with my oversensitivity to stimuli like noise, it doesn’t help with the anxiety and PTSD symptoms. I didn’t mention PTSD as such, but I did mention that my basic level of arousal is already pretty high. She asked me to describe how I moved from my baseline, which I explained was already a five on a 1-10 scale, to a level ten. I explained that I move very quickly and, once I’m at a ten, I’m too overwhelmed and unable to process stuff to take a quetiapine. Then, when I recover slightly to, say, a level eight, I can take the medication and it helps me get back to my baseline level of five.

I can’t remember how we got talking about it, but I assume my nurse practitioner already told her some things about my anxiety. I mean, we got talking about my fear of going to sleep, which I up to that point had hardly realized was maybe an actual fear of going to sleep because of nightmares. Until this point, I’d always assumed it was some form of fear of abandonment, as the night staff isn’t in my home all the time.

The psychiatrist pretty quickly got to her suggestion, which is adding a low dose of topiramate (Topamax) to my daily medications. I had heard of this medication before and a person I know online, had gotten it at his own request to help with PTSD-related nightmares. This person got it only for a few nights when he had to endure a triggering situation though. Besides, I don’t have nightmares every night. So before I agreed to it, I asked the psychiatrist to explain what it would do. She said it’s normally prescribed for epilepsy or migraine, but low doses are also found to be effective for trauma-related symptoms. She explained that some people love this medication and some hate it due to its side effects. At first, I’ll get one 25mg tablet to be taken at night. I’ll notice any side effects I’m going to get within the first several days and can then stop right away if they’re too unpleasant. If I tolerate this medication, the dose can be upped, in which case I’ll need to take the medication twice daily. The highest dose she usually goes to for PTSD is 150mg a day. She said that it should help with nightmares, but also could be helpful in preventing me getting triggered and having flashbacks often during the day.

I loved how understanding she was of my symptoms. I can’t even remember having said that I experience flashbacks, but I quite often do indeed. She said that, though I can continue to take my PRN quetiapine, that one dulls me a bit, while the topiramate should actually make me less susceptible to flashbacks. It reminds me of an explanation of the different effects of antipsychotics vs. anticonvulsants in helping with sensory overreactivity that I once read. It said something like, imagine overload is hearing a hated radio channel at top volume in your head. Both antipsychotics and anticonvulsants change the channel, but while antipsychotics give you headphones, anticonvulsants actually lower the volume of the radio. Of course, I will continue to take my daily antipsychotic (aripiprazole) and antidepressant (citalopram).

A possibly not-so-undesirable side effect of topiramate is decreased appetite. Other than that, side effects include drowsiness, sleepiness, double vision and tingling in the hands or feet. That last one, particularly if it’s going to effect my fingers, sounds annoying, but I’ll get to experience that if it happens.

Since my nurse practitioner will have to talk to my care facility’s physician before the medication can actually be started, I don’t expect this to happen till sometime next week. It’s also been decided I will start this when a trusted staff is on shift.

Now this did get me into an excited yet overloaded state yesterday evening. I mean, seriously, how can it be that someone truly understands? It baffles me but I’m so relieved.

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.

Emotional Flashbacks: I Tend to Fight

I just read up on trauma-related symptoms and was flooded with emotional flashbacks. An emotional flashback is where you are reminded of a past traumatic event but don’t remember it in visual detail. Rather, you feel the emotions associated with the event. You then respond in a usually maladaptive way that is associated with your trauma.

According to Pete Walker, there are four types of trauma responses related to emotional flashbacks: fight, flight, freeze and fawn. I have yet to read up on them all in Walker’s book Complex PTSD: From Surviving to Thriving, but I think I most relate to fight, followed by freeze and fawn. Interestingly, in this book, Walker also discusses specific combinations of responses, such as the fight-fawn hybrid (I think that would be me).

I feel sad, because Walker calls the fight response, which is my most common first reaction, “narcissistic” and on his website relates it to being spoiled. I have yet to read up in his book on whether this is the only trauma that can elicit a fight response, as I was not usually spoiled. Or was I?

When discussing my upbringing with the psychologist who gave me my autism diagnosis back in 2017, after another psychologist had taken it away, I mentioned my parents not letting me develop my independence skills. That is, when I tried to develop independence skills, I was often left to my own resources and not consciously taught. Then as soon as I got frustrated (which I reckon is a natural response), my parents gave up and would do stuff for me. The psychologist called this simultaneous over- and underestimation.

I was rather frustrated with the fact that I was seen as having been underestimated, as this didn’t resonate with my feeling of chornic overwhelm. Also, it somehow feels like it’s a character flaw on my part that I got let off the hook, whereas I consider other forms of bad parenting that I endured to be my parents’ responsibility. Really though, ultimately, it’s my responsibility to heal.

Linking up with RDP #83: Remember.