Validating Jane?

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

Today’s Accomplishments (October 29, 2019)

Last December, I wrote a post in which I shared my small (but important!) accomplishments for the day. I wanted to make this a regular feature, but didn’t. I am not promising it will be this time around, as pressure to do something every day or week with regards to my blog, usually overwhelms me to the point where I quit prematurely. Such was the case with the 31-day writing challenge this October and it’s been the case before. I’m however definitely hoping I can do these more often. Anyway, here are my accomplishments for today.

1. Took good care of my personal hygiene. It’s Tuesday, which means I start my morning routine all by myself and don’t get any help with my personal care. I usually take a quick shower then and often forget to put on deodorant, brush my teeth and hair. I not only took a more thorough shower than usual, but did use deodorant and brushed my teeth. I don’t think I brushed my hair.

2. Took my morning and evening meds, including multivitamin. I got the multivitamin added to my meds recently as I am deficient in folic acid (one of the possible reasons for my fatigue). I often have to remember to ask the staff for this one myself, as it isn’t in the med management system yet.

3. Had three relatively healthy meals. I had two slices of bread with chocolate spread on it for breakfast. That isn’t the healthiest possible choice, but it’s okay. I had two slices of bread again for lunch, plus a banana and a pear. For dinner, we had boiled potatoes, a hamburger and kohlrabi.

4. Walked twice today. Well, three times really, as I also took a short walk in the morning with the day activities staff and two other clients. I took a longer (about 20 minutes) walk in the afternoon with just the staff and took another walk with the living facility staff and one other client in the evening. I don’t have my Fitbit anymore, as its battery is dead and I can’t find its charger, but I’m confident I met my goal for active minutes for the day.

5. Did a short mindfulness meditation. Okay, it took only three or four minutes, but the act of starting a guided meditation in itself is already an accomplishment.

What have you accomplished today?

A Night-Time Crisis

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

Shark!

Stuffed Shark

So my husband came over today. I had originally planned on visiting him for the week-end, but then I’d have to go home to the care facility by ParaTransit taxi again. You get only 700 km at a reduced rate each year and the one-way drive from my husband to here is 72 km. This means that I can’t go each week for the rest of the year. So my husband proposed to come over for a visit.

We went to IKEA in the nearby city of Zwolle. I was looking for an office chair to use in my corner of our house. The way IKEA is constructed, you need to walk past a lot of other stuff before you can get to the desks and office chairs. This meant we could also check out the lounge chairs. I took my lounge chair (well it was originally my husband’s family’s but I used to sit in it all the time) to the care facility with me and would like a lounge chair at my husband’s house too. We couldn’t buy one right away, but we did see some good, some bad and some really rubbish ones.

At one point, we came across the soft toy aisle. My husband showed me a giant stuffed elephant and then an equally large stuffed shark. The littles were totally in awe! He asked us whether we wanted to buy the shark and we shouted “Yes!”. So we now have a stuffed shark. We took most of our stuffies to the care facility with us, so we’re very happy to have a soft toy at home with our husband too. We joked that of course we have our husband, but well, that’s different.

We also got some nice candy. Some of us were upset because we couldn’t have Swedish meatballs. Not that our husband said so – he didn’t explicitly say they were on offer, but he knew we knew about them -, but we had already had pancakes for lunch and figured it wasn’t healthy to have two meals. Everyone was content again when we got the candy.

We also ate out at a nice Indian restaurant. The food was delicious!

“POP!” (Pop of Positivity): An Affirmation and an Uplifting Song

Today, I am feeling better than I was yesterday. I slept really well last night and also had some rest in the snoezelen® (sensory) room. In the afternoon, the behavioral specialist for my facility came by for a little chat. She reassured me that this is not a temporary placement and I won’t have to leave.

After coming home from day activities, I browsed some of the blogs I follow. I came across a post on Pop of Positivity. This is a weekly challenge by Beckie of Beckie’s Mental Mess for us to share what inspires and uplifts us. This week, she challenges us to come up with an affirmation and a song that brightens our mood.

I checked out affirmation apps this evening too. None are very good. I mean, ThinkUp sounds good except that it won’t let me select affirmations from other categories than the default “Recommended for you” one. This seems to be a VoiceOver issue, as I already have a premium subscription (since I bought it a long while ago and it hasn’t expired yet) so it can’t be that. Anyway, the very first affirmation that popped up (no pun intended) for me, really spoke to me.

“I love myself, respect myself and accept myself exactly as I am.”

As for the song, I’ll go with one of my all-time favorite songs. It is I’m a Survivor by Reba McEntire. I know this song wasn’t written by McEntire and isn’t about anyone’s personal life, but it definitely speaks to me.

Attachment Issues and Other Ramblings

Hi people, how are you? I hope you’re doing better than I am, as I’m basically feeling pretty crappy. I tell myself I need to enjoy the good moments, good days even, here in the care facility. I believe that if I don’t feel happy here, then the staff could just as easily kick me out and make room for another person. I know paradise doesn’t exist, so can’t I just be happy with what I have?

That’s not the problem though. I’m not looking to leave this place or thinking I can have a better life elsewhere. I can’t. But still, I’m unhappy at times. Then again, isn’t everyone? And yet I beat myself up over it, which leads to more unhappiness, which leads me to beat myself up even more.

At the root of all this seems to be a deep-seated belief that there’s no place I’ll ever fit in, and if I do believe I fit in, the staff won’t agree and will kick me out. I feel as though I have to prove that this place is perfect for me – which it isn’t, of course. But it’s as close to perfect as can be and that’s enough for me. But is it for the people around me?

Last night I barely slept for two hours. At 5:30AM, I accidentally sent out a video call to my husband while trying to distract myself. He called back almost immediately, as he was at work already. He assured me that he doesn’t want to get rid of me and my staff don’t want to get rid of me either. I was happy enough with that that I could sleep.

This morning, a relatively new to me staff woke me up. She asked whether I’d manage getting started on my personal care. Normally, I get some help on Wednesdays, but I was too tired or confused or scared to ask her for help, so I just went about doing my morning routine. I was feeling pretty out of it, but I couldn’t explain.

The rest of the day was okay. I went to the dentist this afternoon for a check-up and because I’ve been having some pain. I have inflamed gums, but other than that my oral health is good. I was told I brush my teeth well, something I attribute to the electric toothbrush my husband gifted me for my birthday. Now I will need to use toothpicks too. One filling that I’ve had for like fifteen years needed replacement, but that will happen at my next appt.

Laura’s Song Challenge (October 21, 2019)

Oh my, and once again I didn’t write much at all in the past week. A lot is on my mind, but I can’t seem to put fingers to keyboard to express it.

I first heard of Laura’s Weekly Song Challenge many weeks ago, but could never seem to find songs that matched each of the three themes. Today I can. I wasn’t tagged, but Laura invites everyone who wants to consider themselves tagged. So here goes.

1. Post a song that has either in title or lyrics the name of a state in the US.

2. Post a song that either in the title or lyrics the name of a town.

3. Post a song that either in title or lyrics has the name of a country or continent.

I originally thought that this last song was also by Truck Stop. It isn’t, but it is on the same CD my husband used to play in the car a ton of times in like 2012. I love most of the songs on that CD. I don’t know whether any of these have captions or lyrics attached, and I personally don’t understand all of the lyrics either. Even if you don’t understand enough German to get the lyrics, I wish you lots of fun listening to these songs.

I am not tagging anyone, as everyone I’d consider is already tagged, but if you read this and would like to participate, please do.

Working On Us Prompt: ADHD

It is Wednesday and that means Beckie has launched another topic in the Working On Us Series. I badly wanted to participate last week, when the topic was (complex) PTSD. However, I felt too low on energy then. This week, the topic is ADHD.

I was never diagnosed with ADHD, so in this sense I have little to add here. I, however, do experience many symptoms that could be signs of particularly inattentive-type ADHD. They overlap a lot with autistic symptoms though, which I do have a diagnosis of. At this point, I don’t think it’s necessary for me to get an official ADHD assessment. Most groups for adult ADHD/ADD welcome self-diagnosed individuals and those who are questioning, like me.

Symptoms I relate to include restlessness, both physically and mentally. I’m not necessarily hyperactive in that I blurt out random things, but I do fidget like all the time and my mind is usually racing. That is, it is either racing or completely shut off, like when I’m low on energy.

The same really goes for impulsiveness: I’m not impulsive in the typical way, but I am in less typical ways. For example, every need feels urgent to me. This applies to basic human needs like eating – when I feel hungry, it feels as though I’m literally starving -, but also to other wants and needs. This could be related to autistic sensory processing issues, but I believe it’s more than this, especially since it doesn’t just apply to sensory or bodily needs.

As for inattentiveness, I can’t usually pay attention to something unless it really interests me, in which case I hyperfocus and become totally absorbed to the exclusion of other activities. I know this is an ADHD trait, but it is also common in autistics and I’ve always wondered whether everyone doesn’t have this issue to an extent.

Lastly, my executive functions seem to suck. My memory for random words or digits is about average and used to be above-average, but for everyday life experiences (particularly others’ experiences) and daily tasks, it’s pretty bad. I was told when I did a behavioral memory test (where you have to retell a short newspaper story) as part of my autism assessment, that my memory is detail-oriented.

With respect to planning and organizing tasks, I suck at those and always have. I used to do pretty well when faced with a deadline, but even then I struggled to organize tasks. I recently read that ADHD children often learn to do tasks on high adrenaline. The reason is often that neurotypical adults assume that, if a child is capable of something relatively difficult once, they must be able to do it all the time and must be able to do all assumed-to-be-easier tasks in that category. For this reason, neurotypical adults often force ADHD children into doing tasks they cannot yet do, assuming they can, and as such cause the child high anxiety. This causes an adrenaline rush, which temporarily increases the child’s ability to perform.

When I read this conversation on Facebook (it was originally posted to Tumblr but I don’t know where), so many bells rang in my head. Like many people referred to in this conversation, I can sometimes do seemingly more complex tasks while not being able to do simpler tasks in that same category. I am also very inconsistent in my abilities, usually being able to perform a task under pressure better, but with less pleasure. For clarity’s sake, this conversation was meant to explain the harmful effects of forcing children to do tasks they feel they are not capable of.

Since I do not have an ADHD diagnosis, I’ve not had any treatment specific to it. I’m also not on ADHD medication. I, however, find that some coping strategies that work for ADHD individuals, do work for me.

Fatigue (For Lack of a Better Word)

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.

Song Lyric Sunday: Bus or Truck

Man, I totally flaked out on the 31-day writing challenge. Well, whatever. I’ve not been feeling well, both physically and mentally. Today I’m feeling slightly better, so it’s time for a blog post.

This week’S theme for Song Lyric Sunday is Bus/Truck/Lorry. I am going to share my favorite children’s song: Wheels on the Bus. The lyrics I found weren’t the same ones I normally listen to and I can’t find the right ones (unless they’re attached to the YouTube video). Here are the lyrics I found first, and then my favorite version on YouTube, which is by The Gigglebellies.

The wheels on the bus go round and round
Round and round
Round and round
The wheels on the bus go round and round
All ’round the town
The wipers on the bus go swish, swish, swish
Swish, swish, swish
Swish, swish, swish
The wipers on the bus go swish, swish, swish
All ’round the town
The driver on the bus goes ‘move on back’
Move on back
Move on back
The driver on the bus goes ‘move on back’
All ’round the town
The people on the bus go up and down
Up and down
Up and down
The people on the bus go up and down
All ’round the town
The horn on the bus goes beep, beep, beep
Beep, beep, beep
Beep, beep, beep
The horn on the bus goes beep, beep, beep
All ’round the town
The baby on the bus goes ‘whaa whaa whaa’
Whaa whaa whaa
Whaa whaa whaa
The baby on the bus goes ‘whaa whaa whaa’
All ’round the town
The parents on the bus go ‘shh, shh, shh’
Shh, shh, shh
Shh, shh, shh
The parents on the bus go ‘shh, shh, shh’
All ’round the town

There’s also a similar song about the wheels on the truck. I don’t listen to that nearly as often though.