Tuesday Ramble

Posted on by Astrid

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

A Profound Psychiatrist’s Appointment

Posted on by Astrid

So we had a psychiatrist’s appointment today. Originally, our psychiatrist had asked to see our husband too, but he didn’t want to come. I was a little late due to transportation issues, but we still covered many profound topics.

First, we went into why our husband didn’t want to come to the appointment with us. The psychiatrist was careful not to let me speak through her for my husband or vice versa. I liked this.

Then we went into our treatment goals and why we’re going extremely slowly with the dialectical behavior therapy program we’re following. Our nurse practitioner had already explained that he’d like us to fully understand the concepts before moving on to the next chapter, so that’s why in three months we’ve not gotten beyond the second chapter, which covers core mindfulness skills. There are 24 chapters in the course. Normally, BPD clients in group therapy do one chapter for each session and so they can finish the course within six months.

I started to explain how I find it incredibly hard to apply the skills into my daily life. Like, there’s one skill called observe, which is intended for taking a little distance (without dissociating) from an overwhelming emotion. For example, you can start by observing what you feel or think without describing it. I thought an example of this distance-taking was to do arithmetic in your head. My psychiatrist says that’s a step too far, as we first need to observe that we’re experiencing an overwhelming emotion (or physical sensation). Then we can take a step back and decide what to do with it. I mentioned the physical sensation of needing to use the toilet, which commonly overwhelms me to the point where I can no longer act fully functionally. (Because I am blind, in most places, going to the loo requires me to ask someone to show me where it is, which requires communication we don’t have access to when overwhelmed.) The psychiatrist told me that, if I do observe this feeling on time, I can still decide what to do with it out of my Wise Mind (DBT jargon for the right combo of feeling and thinking).

Then we went on to discuss the “pieces”, as we call the alters qwhen our mental health team are around (as to avoid self-diagnosing). Our psychiatrist asked us to describe some experiences relating to them, like how many are there (around 25) and what happens when we switch. She then asked whether all of us could agree that there is just one body, whether we like it or not. This was a truly profound question. First, she had us clap our hands and asked whether any of us are still convinced they could use those hands to cover their ears and not listen to what she had to say. That didn’t work, as we still dissociated a little. Then, she held our right hand and asked the same, repeatedly. This brought on a ton of emotional reactions, mostly wonder. We couldn’t say much, but later, when in the taxi back home, some of us were like: “I may not be able to cover my ears w ith those hands, but I can still run from that psychiatrist. Oh no, I can’t, as she’s holding my hand.”

We also went into how to do treatment from here on. We sort of sarcastically said maybe it’s going to take us five years. Our psychiatrist said that, if we truly want to make this work, to count on it that it’ll take that long indeed. I’m not sure how we feel about this. I mean, when we first started DBT a year ago, we were told by this same psychiatrist to do one chapter every two weeks and finish in a year. Of course, we found out pretty soon that this wasn’t working and a lot of other issues got in the way, so we restarted about three months ago.

We’ll meet with our psychiatrist and nurse practitioner together someday in September. Our psychiatrist will then explain a little about how to go from here and then we can hopefully decide whether we want this or not.

At the end, the psychiatrist shook our hand and said: “Now I’m giving you (plural) a hand and say goodbye.” That was such a validating experience. It was good to be validated like we’re multiple minds but also contained in that we only have this one body. As a side note, neither of us ever mentioned DID or dissociation. We think that’s a good thing, in that we don’t need to conform (yet) to any diagnostic box. After all, we don’t “want” to be DID, but we are multiple whether we want it or not.

How to Proceed in Our Mental Health Treatment

Posted on by Astrid

So we met with our nurse practitioner for dialectical behavior therapy again. This was our first session since I started considering dropping out. I am still unsure as to what I want, but I’m pretty sure that just working the manual in a very structured way isn’t working for me. I also wondered out loud how long this treatment is going to take and whether I think it’s worth it. With regards to this, my nurse practitioner explained that behavor change takes a long time because we learned our patterns from babyhood on.

We started discussing the “pieces”, as we call the alters when talking with our treatment team. My nurse practitioner said he wants to discuss this with the psychiatrist. I doubt much will come out of that, as the psychiatrist keeps the status quo as to whether we’re dissociative or not. She most likely believes we’re not, but wants to bring it diplomatically.

We went some into our original trauma, which involves my parents not having been given a choice as to whether I should be actively treated after my premature birth. They weren’t sure themselves and were told the doctors were keeping me alive and not to interfere or they’d lose parental rights.

My nurse practitioner also mentioned a book and movie about a person with multiple personalities (possibly Sybil). I am pretty sure my psychiatrist is going to stomp that association right out of him, as like I said, she probably doesn’t believe I’m dissociative.

After leaving the session, we were pretty unquiet. Katinka tried taking over from Clarissa, who usually does DBT, to get back into daily functioning mode. That was only partly successful. Our support coordinator arrived ten minutes after we got home and we were still pretty unquiet. We were able to calm down eventually and enjoy a walk.

In the evening, when our husband got home, we discussed the session with him and asked him to come to our next psychiatrist’s appointment on Tuesday. The original reason the psychiatrist had asked him to come is that she’d gotten the impression that we have relationship struggles. That upset my husband, of course. I finally managed to say that I want to discuss where to go from here regarding treatment.

There are several options. I could proceed as I have until now, which seems like the least productive option. I could stop going to therapy altogether or just stay with the team for med management and the ability to call someone when not feeling well. Or I could do more supportive therapy focusing on my emotional pain. This then could again be focused on several aspects of my life and it could or could not involve the “pieces”. I think that last option sounds best to me, but since it wouldn’t likely be based on a protocol such as DBT, I don’t think my psychiatrist would accept this. A fourth option, which I just realized when talking to someone on Facebook, is staying with my current team for med management and crisis support and going to another therapist for formal psychotherapy. I don’t think that’s a realistic otpion though.

#WeekendCoffeeShare (August 11, 2018)

Posted on by Astrid

I did the #WeekendCoffeeShare for a while on my other blog, but stopped eventually. Now that I’m getting this blog up and running, I think I’ll participate again. I’m currently having a cup of organic green tea with my mother-in-law, but if you’d like coffee, that’s fine with me too.

If we were having coffee, I’d ask you how you’re doing. I hope you’re all doing as well as possible. I hope the weather is good where you are. It is here. For me, that means not soaring hot anymore but not chilly either.

If we were having coffee, I’d share that I started new day activities last Monday. My first week as a whole was as good as my first day. I have been doing a variety of different activities, both indoors and outdoors.

If we were having coffee, I’d share that I’m still enjoying this blogging adventure. It is a challenge to blog everyday, but so far I’m meeting that challenge head on.

If we were having coffee, I’d share that I am considering exploring a low-FODMAP diet for irritalbe bowel syndrome. I discussed this with my mother-in-law, who is trying this too. It is pretty compliicated, particularly the elimination phase, but it may be worth trying. I was provisionally diagnosed with IBS in 2013 after a colonoscopy, bloodwork and a stool sample all came back normal, even though I’m not a classic case. I’m already pretty sure artificial sweeteners trigger my IBS. I consume those in relatively large quantities, as I tend to believe they’re an excuse to consume sweetness without gaining weight. Thankfully, with low-FODMAP, you don’t need to stop eating products that may be triggering altogether. IBS, after all, is painful and annoying, but it is not dangerous.

If we were having coffee, I’d share that I’m enjoying the day at my in-laws. My husband is visiting his grandma, who had a stroke a few weeks back. Unfortunately, due to her cognitive decline, she probably won’t recognize me, so I am not going with him. I’m so happy that I can stay at his parents’, because I don’t like being alone all evening. My father-in-law made a delicious pizza for dinner.

So what have you all been up to lately?

Angry

Posted on by Astrid

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.

Some Kind Words Meant the Best Part of My Day

Posted on by Astrid

Boy, am I feeling awful right now. I ate a whole bag of sugar-free candies (a small bag, but still) and now I’m having the worst bowel cramps in the history of this body. A part of me is still not convinced that I should never buy these candies again, as this part believes with their laxative effect, I’ll actually lose weight while indulging into my sweet tooth, so a double win. I have already banned myself from buying candy containing sugar, as that’d mean I’d eat a whole (usually much larger) bag too and I’d have the added drawback of it containing like 1500 calories. My goal is to be healthy though, not skinny and awful-feeling. That same part of me disagrees, but well.

To cheer myself up and to find inspiration to write a post for today, I looked at some question of the day posts on other blogs. On A Writer’s Life, last Monday, the author asked a question that could fulfill both these purposes. They asked about the best part of our day.

I had a pretty boring day today. I didn’t do much that was truly exciting. That is, I exercised on the elliptical for the first day in a while, but that’s while I was already suffering from the aforementioned bowel cramps. At day activities, I did a few things I enjoyed, but nothing that stood out majorly.

However, some kind words from my day activities staff did stand out. Yesterday, I had been taken home by taxi as usual. The drivers know the day activities in this area well as they regularly drive clients there. As such, they know that my group is for pretty severely intellectually disabled people. The driver who drove me home yesterday asked what I, being of at least average intelligence, do at that group. I did go into an explanation, which I later felt maybe I shouldn’t have. I mean, she’s just a driver, not one of my staff.

I also worried that my real staff would soon enoug find out that I’m too good for that group too. So today I asked one of the staff at my group. She said: “Because you can talk so well, people may get that impression, but we know better.” It didn’t sound like it was a blow to my self-esteem at all. She didn’t mean it to highlight my social and emotional difficulties, which are the reason I’m at this group. She just said that they’ve gotten to know me well and we’ve together decided that this is the right froup for me. Phew, was I relieved.

Movement Therapy Again

Posted on by Astrid

It’s incredibly hot (yes, it’s *still* incredibly hot) and I’m not too motivated to write. However, we had movement therapy again today and I feel pretty much obligated to share about it, since our last session didn’t go well.

I was feeling somewhat stressed but also capable of communicating my feelings at the start. I explained about having fought with the therapist about her asking for Astrid to come back. I just realized yesterday how unhelpful this can be on several levels. It’s not just that it creates a fight between us and the therapist. If the one who thinks she’s truly Astrid truly appears, she’s often quite disoriented. Yesterday she did after Marieke tried to be open about herself. I don’t know whether she’s truly the core or just a part who denies our existence. I like to view us as a system as altogether Astrid, but this Astrid part is clearly not us as a whole and can still feel quite dissociated. But I digress.

I told the movement therapist that I’d prefer her asking us to get back into an adult state if we seem to dissociate. This was fine by her, so when this had been cleared up, we could proceed with the session.

I disclosed that our mind was quite full of thoughts. Actually, it was several others chattering but I didn’t say so as to not start another argument. We then did a concentration exercise. We had to move a one-meter-long stick that was standing up from one hand to the other without dropping it. Then from one finger to the same or next finger on the other hand. This was quite a challenging activity and we liked it.

After that, we did a sensory activity with a spiky ball. I was out in the body but Marieke and Suzanne were close by. I chatted to the therapist while they felt and enjoyed the ball. After this, we did a ball-throwing activity. This was definitely calming and enjoyable. It helped that the others had already had their time close by the front, I think.

First Day at New Day Activities

Posted on by Astrid

We had our first day at the new day activities. The taxi arrived at my doorstep around 8:10AM. Since I’d been informed I’d be picked up around eight, I had already been waiting for about fifteen minutes. That was no problem though. The driver said he’d have to pick up some other people on the way, but I still arrived at day activities by 8:35. That’s very early, since most other clients don’t arrive till nine o’clock. The taxi driver said that he’d pick me up a little later tomorrow.

When I arrived, I had some water. While placing my stuff where it belongs, I stumbled upon a weighted chair. This is a comfortable chair where you can fold the arms inward, which are filled with balls to make them heavier. That way you’ll feel some deep pressure. I don’t really know how to explain it but it was really good and I sat in the chair for a little while.

After that, I did some table-based activity using magnetic building materials until it was time for coffee at 9:30. We went outside to drink our coffee. Meanwhile, I inquired as to whether we’d be going for a walk this morning. This group usually does on Monday mornings, but it’s still very hot so I thought it’d be too hot. One of the staff said it’d be too hot indeed but the other staff would have to go to the supermarket and she could ask whether I could go with her. This was fine with the other staff and we went on the side-by-side bike. I loved this.

After that, I did another table-based building activity. This one I had tried already when I was introduced to the center a few weeks ago, but I discovered new ways of building the blocks anyway.

Meanwhile, the staff were sorting out how to register my attendance in the agency’s computer system. This did stress me out a little, but not too much and I was able to confirm with my support coordinator that it would all be sorted by tomorrow.

The taxi back was again very early. I’d been informed that I’d be taken home by 1PM, but the taxi arrived at the day center by 12:30 and the driver was sure that this was the correct time to pick me up. Well, we were still eating our lunch, so no. I quickly collected my stuff and went home. Overall, it was a good day.

Saying Goodbye at Day Activities

Posted on by Astrid

Today was my last day at my now old day activities. It was a good day. My assigned support worker wasn’t on my group today but she was in the building. Yesterday already, another support worker I like came for a cup of coffee on her day off so she could still say goodbye to me, as she doesn’t work Fridays either.

First, I had a cup of hot chocolate. I usually drink coffee but wanted a treat. Don’t tell me it’s summer and hot chocolate isn’t a summer drink, because I just loved the sweetness. Then, like most mornings, I went for a walk with one of the staff. It was lovely walking by the river.

As the other clients arrived, we had coffee and fruit. The people on my group are all profoundly intellectually disabled, so they probably don’t understand that I’m leaving. As such, I didn’t make a big deal out of it at my group.

I had decided to go make ham and cheese sandwiches at the group my assigned support worker worked at today. They make ham and cheese sandwiches each Friday and I’ve participated a few times before. First, however, I gave each of the staff at day activities a tiny handmade soap that’s shaped like an apple.

When we were making the sandwiches, the people from the industrial group that I originally started day activities at, came over. They handed me a card and a Winnie the Pooh coloring page that a woman I’m close with had colored. Unlike the people at my group, they and particularly this woman did understand that I was leaving.

Then, they gave me some gifts the staff had bought for me. I got a smoothie cup with a straw, because I love making smoothies and milkshakes. I also got a lovely unicorn soft toy. It is white with a lilac tail and rainbow-colored hair. I sleep with like six stuffed animals in my bed and have two more in my favorite chair in the living room. Now the unicorn has joined those two. I challenge my readers to think up a name for her.

Lastly, I got a lovely set of body care products. They are a body scrub, a body butter and body mist. I have a huge collection of body care products already, but these truly smell awesome!

Leave-taking is bittersweet, but I truly hope to have a good time at my new day activities and to not have to say goodbye there within at least a couple years.

Consultation Meeting Today

Posted on by Astrid

This is Clarissa, but a lot of us are near. I just had the meeting with the Center for Consultation and Expertise (CCE) consultant this afternoon. The CCE is an organization that helps in complex care cases where a client with a disability or illness gets stuck due to “severe problem behavior” and their quality of life is at risk. We originally started this consultation last May because we had to leave our current day activities due to our challenging behavior and were stuck in the process of finding a new place.

Now that we’ll start on our new place next week, we decided to go ahead with the consultation anyway because we still lack perspective in many respects. For one thing, we’re struggling to live independently with our husband. For another, we’re unsure as to whether the treatment we receive from the mental heath team is really the best for us. We do dialectical behavior therapy because it was recommended to us, but we really struggle to apply its skills in daily life.

One thing in this respect which the consultant said, was that maybe all this treatment isn’t working because we talk too much and do too little. Or something like that. She didn’t mean that we don’t move our arse. What she said was, our treatment is based on a borderline personality disorder diagnosis while in reality our autism, which can’t be treated, is more relevant. As such, we might do better living our life with enough support rather than constantly needing treatment.

Wow. This had us thinking. Could we really live our life without a psychiatrist and other mental health professionals on board? Sounds really dependent as I write it now, as if we depend on our mental health team, whom we mostly see every other week, to keep us functioning. But the truth is, do we really need them?

Most of us are so excited at the prospect of just being allowed to be ourselves. As it is now, we need some mental health staff for support when we need to talk and our support worker isn’t around. However, it doesn’t really take a mental health degree to help us in most of these cases. Other than that, we go to the obligatory DBT sessions with our nurse practitioner and to movement therapy, neither of which we feel is terribly effective and both of which are temporary.

I will have to give it some thought. We really most likely need support for the rest of our life, and that’s okay. Our need for an on-call support worker (now that’s a psychiatric hospital nurse) will most likely not vanish if we finish DBT. And yet our “prescription phone call” service has to be renewed every six months. If my husband and I move closer to a supported housing facility, and/or we get access to a non-psychiatric support phone line, wouldn’t that be far better? I’ll really have to discuss this with the consultant when she visits our home on August 14.