Tag Archives: Therapy

Phone Appt With Our Psychiatrist

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mental Health Ramble

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.

Belated Weekly Gratitude List (September 29, 2018) #TToT

I didn’t participate in #TToT last week. Yesterday, I was going to write just when I realized it was time to go off to bed, since my husband would need to get up at 5AM this morning. I for this reason didn’t write my #TToT post then. I’m feeling slightly less depressed than I was over the past couple of weeks, but my depression is still there. I am therefore going to attempt to write a list of things I’m grateful for again.

1. Exercise. I had a pretty hard time exercsing regularly last week. This week was better. I managed around 3 1/2 hours of exercise this past week according to my Fitbit and reached my five-day goal. It does count walking as exercise, but I also managed to go on the elliptical twice.

2. Swimming. Last Tuesday, I went swimming at day activities again. I hadn’t been going the previous time two weeks ago, because I had a cold then. This time, there was no extra staff for me. The volunteer watching me however complimented me on my independence. By the way, my Fitbit is water-proof so it did record my swimming activity.

3. An afternoon at my in-laws. On Tuesday, I didn’t have support after day activities, so I asked whether I could stay at my in-laws. My mother-in-law picked me up at 3PM and I was home again by 7:30.

4. Possibly extending my day activities hours. This we discussed on Thursday, when my support coordinator and assigned day activities staff came to my home. Hopefully come October 9, I’ll stay at day activities Tuesday afternoons. I hope to eventually be able to go four full days, but that has yet to be determined.

5. A good session with my nurse practitioner. We did continue to work the DBT manual, but I felt more able to contribute my own thoughts than I was before. Before, it felt like he was just reading the manual to me and I was unable to make sense of it.

6. Buying nice things at the wholesale store today. My mother-in-law has a customer card for them and I went with her. I got a pair of warm slippers, a night gown, two bras and a chocolate bar.

7. Browsing Amazon for Kindle books. It seems as though Adobe Digital Editions eventually decided no longer to work with at least my rather outdated version of the JAWS screen reader. That’s sad, as I have a lot of DRM-proteced EPUB books in there. However, it gave me a reason to browse the Amazon Kindle store too. I haven’t bought any books, since I still haven’t finished those in my library. Still, browsing the store is already a lot of fun.

8. Being at least a little inspired to write. I didn’t write everyday this past month. Not nearly. However, since having this blog, I never fell into as much of a rut as I did with my other blog regularly. That is, there haven’t been two consecutive days that I haven’t written at all since starting this blog. I should be proud of this! This really gives me hope. I will be participating in #Write31Days in October and am positive I will finish the challenge this year. Yesterday, a ton of ideas to write about started popping up into my mind again.

I notice I’m having a little bit of a hard time finding things to be thankful for this week. I wanted to mention horseback riding or the long walk on Monday, but those are on my list almost every week. I felt this’d get boring. However, I mention them here anyway to make a point out of being grateful for my everyday experiences.

Consultation Meeting at Day Activities

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.

Five Years

Today marks five years since our DID diagnosis got removed and changed to BPD. I’m not sure how to feel about it. I mean, that diagnosis was most likely incorrect but so is the BPD (which later got downgraded to BPD traits, which I do think we have but then again who doesn’t?). I mean, we rarely if ever experience amnesia and don’t go around disclosing ourselves when it’s not safe, but we do clearly exist as multiple identities.

Besides, the therapist who diagnosed us with DID at least took us more seriously than any before or after her (except for maybe our current psychiatrist, whom we just came out to three weeks ago). She didn’t allow us to be out with the nursing staff, which was okay’ish with us, but she did allow all of us to talk to her and didn’t try to fit us in a therapeutic box. The therapist who changed our diagnosis to BPD did, mislabeling Jane as a “punitive parent” and telling her to go away.

We at one point insisted on getting formal testing for DID. The therapist administered the SCID-D (a structured interview for diagnosing dissociation) to us but never finished the report. I wish she had even if it showed we’re fake. I mean, we have a right to information, don’t we? She also never responded to our E-mail, once our diagnosis was changed, asking her whether she’d ever suspected BPD in us.

I feel really odd now. I don’t know where we’re headed with regards to our mental health treatment. It’s all so scary. What if we’re really all imaginary? Since it’s unlikely we’ll ever be diagnosed with a dissociative disorder or get related trauma treatment again, will we ever learn to not exist?

A while back, someone asked in an FB group what happens to those misdiagnosed with DID after they get de-diagnosed. Whether their parts vanish. I don’t know really what I hope happens to us. I mean, we’ve tried to hide for a long time after our diagnosis got changed, but it was unsuccessful. We’ve tried to identify with the natural/endogenic multiple community before, since we felt not having a diagnosis meant we shouldn’t intrude upon the DID community. That was unsuccessful too. Does the fact that we can’t hide successfully for a long time mean we’re real after all, or does it mean I’m just terribly stubborn? I initially wrote “we” instead of “I”, but of course if we’re fake, we are not we anymore and never have been.

Quote of the Day (August 30, 2018): Cultivating Mindfulness

“The best way to capture moments is to pay attention. This is how we cultivate mindfulness. Mindfulness means being awake. It means knowing what you are doing.” – Jon Kabat-Zinn

I had another session of dialectical behavior therapy with my nurse practitioner today. In it, we discussed the skill of participation, which essentially boils down to doing something with attention without constantly being aware of the fact that you’re doing it. This seems pretty contradictory to me, because how do you do something mindfully without constantly being aware of it?

In this repsect, this quote speaks to me. It describes mindfulness as a way of knowing what we’re doing and paying attention to it.

It also seems that this may be what Pete Walker means when he describes the flight-freeze continuum of healthy relating to self in his book Complex PTSD: From Surviving to Thriving. He says that the healthy middle between freeze and flight is the middle between doing and being. Freeze then is the state of constantly dissociating, daydreaming away time, while flight is the state of constant doing stuff, working time away. I tend to fall closer to the freeze end, while other people might lean closer to the flight end. Whenever I’m upset, I retreat into my own world. Someone who is a flight type would more go and do stuff, such as housekeeping, work, etc.

Kabat-Zinn in his quote says that mindfulness means being awake and knowing what we’re doing. It means not mindlessly staying busy to avoid hard feelings (flight), nor means it being disconnected from one’s surroundings (and oneself) to avoid hard feelings (freeze).

Now I seem to understand where the flight-freeze continuum also comes in handy in my DBT skills training. Flight then describes rational mind, not feeling anything because we’re busy doing (work, housekeeping, etc.). Freeze describes emotional mind, being stuck in the inability to do something about our experience. The middle ground in DBT is called Wise Mind.

A Profound Psychiatrist’s Appointment

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

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.

Movement Therapy Again

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.

Consultation Meeting Today

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.