What I’d Put Into a Self-Care Kit

So I eventually gave up on the #Writ31Days chalenge. I couldn’t cope. It had become too much of a burden. But I still want to write. Today, I am sharing another personal growth-inspired post. I am writing about those things I use to take care of myself. A Dutch blogger posted about using a self-care kit, which is a box with self-care/positive items in it. Here is what I’d put in my self-care kit.

1. My crisis plan. I cannot read print, so I’d have to either type out my plan in Braille, which is too much work, or put a simple reminder on the box lid to read my crisis plan.

2. Stuffed animals. I as well as the inner children love the stuffies! Rainbow/Sofie, the stuffed unicorn we got at our old day activities, is best used for fidgeting. The inner kids prefer our toy sheep. When we’re cold, we prefer the sensory cat, which you can heat in the microwave and then gives off a nice lavender scent.

3. Essential oils and wax melts. I love love love essential oils! I do happen to have some faith in aromatherapy too, even though I know that it’s not scientifically proven. I would still someday like to create my own mmassage products with essential oils, but for now I just diffuse them. I have a box filled with over 20 different oils.

I also love wax melts, althogh my husband often gets a headache from the strong scent. I particularly love fruity and sweet smells.

4. My sensory exercise products. I have an exercise ball, which obviously doesn’t fit into a box, but which I love anyway. My air stepper pad does fit in a box. I’d love to someday get a Flowee spiky mattress too.

5. Soothing music. Nowadays I don’t listen to CDs. I get all my music from Spotify. I have a custom playlist with soothing sounds and peaceful music. I also love a lot of playlists created by Spotify itself.

What would you put into a self-care kit?

My Greatest Dream in Life #Write31Days

Welcome to day five in #Write31Days. So far this month, I’ve used a bunch of prompts from various sources already, each with a different perspective on personal growth. Today, I picked a prompt from one of my older collections of journaling prompts, a book of 100 self-help journal prompts by Francie Brunswick that I have in my Adobe Digital Editions. Adobe Digital Editions is no longer accessible with my outdated version of the JAWS screen reader, but I managed to get it working a little with NVDA, an open-source screen reader.

The prompt is to journal about your greatest dream or the ultimate goal you have in life right now. I do have goals, but if I have to be really honest, my biggest dream is to feel mentally stable and safe.

I have suffered with depression on more than off ever since middle childhood. My parents tell me that, before then, I was a cheerful, laid-back child. I still had social and emotional deficits, but they were manageable. According to my parents, my psychiatric struggles didn’t start until I was around seven. They blame it on my becoming aware of my blindness.

I am in contact with an autism-specialized consultant for getting me proper care. She says that many children with normal or above-average IQ and autism get stuck in school at some point. Usually the first point of actual breakdown is the beginning of secondary school. I remember this point really well. One day, in my first year of secondary school, only one month in, I wrote in my journal that I’d rather earn a high level high school diploma in six years than have to settle for a lower level with more special education support. In the years that followed, I kept hearing this inner voice: “YOu don’t want to go back to special ed, do you?”

The next point of breakdown usually happens in college. I finished one year of college only with a lot of support. Then I broke down at university. I never fully recovered.

Over the next eleven years, I resided in general mental health facilities until being kicked out for allegedly being dependent. People had control over my life all this while and I never felt safe. Now I’m away from the controlling professionals and my parents, living with my husband, but I still feel extremely unsafe.

I was originally going to write down my goal more specifically. I was going to write that my biggest dream right now is to get into long-term care. That sounds extremely off though. I’m still not free from the interalized stigma surrounding long-term care. Still, I think I should be too “high-functioning” for it. I’m scared that, if we apply for long-term care funding, the decision-maker will read this blog and say that someone who can write a blog, should not need 24-hour care. That’s a terrible misconception that could cost people their lives. And yes, that includes me.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

Next Year

Last week, I wrote a post based on a journaling prompt from the book The Self-Exploration Journal about where I’d want to be years from now. The next rpompt asks us to write about where, given our current daily activities and routines, we can realistically expect to be in a year.

If my daily routines and activities of the past sixteen months, living with my husband, have taught me anything, it’s that nothing is certain. I thought, after my last overdose in Ocober of 2017 that I would be stabilizing now at my old day activities and with my home support. That didn’t work out, because within months I was told I’d have to leave the day center eventually.

Now I’ve only just settled in at my new day activities placement. I am pretty content with how things are there now, but am not sure I feel excited about evnetually going four full days rather than just mornings. I mean, I still struggle a lot with overload.

At home, spending my afternoons alone, I feel awful. This could be depression sinking in again, but I’m not sure.

Realistically, based on my current routines and activities, can I expect to move within a year? I mean, I badly want to, but am even undecided as to how I want to live. Maybe next year I’ll be living in another house with my husband. Maybe I’ll be in supported housing after all. Maybe – most likely – I’ll still be holding on by a thread as I live here.

Mental health-wise, I don’t expect I’ll be doing much better in a year. That’s partly because my mental health issues are rather complex and partly because we don’t have a clear treatment plan that everyone agrees on.

I don’t expect much improvement in my physical health either, though I do hope to be a bit more in shape. Based on my current habits, I cannot expect to be at or near a healthy weight yet, but will hopefully have lost some weight.

I would really like to do some more learning. I tried to learn German for a bit a few weeks ago, but my head spun with all the information. Maybe I’ll be able to do some learning as I go by engaging with the books and blogs I read. I’ll also hopefully keep up the daily writing practise.

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.

Weekly Gratitude List (September 7, 2018) #TToT

I’m extremely tired and don’t feel like writing. I’m also falling into the trap that killed my other blog, taking it too seriously. That is, I can’t keep from comparing myself to “influencers”, which I am not and will never be. It’s a sad truth, but to be truly influential these days you need to be able to create visual content, which I, being blind, can’t do.

As a result of all this, I’m feeling a bit sad today. This makes me even more unmotivated to look at the bright side and create a gratitude list, but I’m going to try anyway. Here, hence, is my weekly gratitude list.

1. A nice walk with my husband on Sunday. I’ve had trouble sticking to an exercise routine over the past week. In other words, I’ve not been on the elliptical at all. For this reason, I’m extra glad my husband offered to go on a walk with me.

2. The new intern at day activities. She’s nice and seems very competent.

3. A good visit with my in-laws on Tuesday. We had a power outage, so I texted my mother-in-law whether I could stay with them to do some computer work. My husband’s 16-year-old cousin was staying at my in-laws and she was delighted to see me.

4. Nice food. We didn’t have the most high-class meals this past week, but I don’t like those anyway. My husband makes delicious pasta – very simple but so good. I also have been eating a ton of fruit lately.

5. Still another day that the weather was good enough to wear a skirt. I wrote a few weeks ago that we’d probably passed the last day for the year that I could wear a skirt, but Wednesday was a surprisingly warm day. I loved it. Thursday was chilly and rainy, but today has been okay too.

6. My home support and mental health staff. I wasn’t feeling very well yesterday – very tired, confusd and dissociated. My support worker noticed and was trying to help me as much as she could. I rang my mental health team eventually. The on-call nurse didn’t know how to help me, but offered to leave a message with my nurse rpactitioner to call me back. He did and he helped me find ways to snap out of the downward spiral.

7. Eating a delicous macaroon today. Because the weather was still nice and we didn’t know whether it’d stay that way (it didn’t), one of the day activities staff took us to the marketplace early this morning. We bought a delicious cookie for everyone and I chose a macaroon. It was sweet, but oh so delicious!

8. Horseback riding again. The weather was okay again in the afternoon, so we actually went outside. It was so lovely. Angie, my horse, did a very good job and the trotting was so much fun.

9. Books. I bought the new Cathy Glass book yesterday and have been greatly enjoying it. For those not familiar with her, Glass is a UK foster carer and writer of memoirs about the children she’s fostered. This new book is really sad so far, but it’s good.

10. Getting so many things I’m thankful for listed even though I originally wasn’t motivated for it. I just had to write that as a separate item to get to ten things. Not that we’re required to do ten things, but it just looked so cool.

Linking up with Ten Things of Thankful as usual.

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.

Mental Illness Labels

Yesterday, Sue over at My Loud Bipolar Whispers wrote a very interesting post on mental illness labels. It is definitely very inspiring to read how Sue overcomes the stigma and self-stigma of mental illness labels. I must admit I’m still caught up in mental illness labels at times. I started this blog in part to help myself overcome this limiting mindset where a diagnosis defines me. As such, I thought I’d do a similar post to Sue’s.

Over the past nearly twelve years that I’ve been in the mental health system, I have accumulated a bunch of mental illness labels. I am too lazy o list them all, but they included adjustment disorder, impulse control disorder NOS, dissociative identity disorder, PTSD, borderine and dependent personality disorder and depression. These labels define me in a sense, but in a sense, they do not. After all, some of these diagnoses were not just given to me but taken away again later. As such, I’m not supposed to dissociate anymore, as DID is no longer among my mental illness labels. Well, here we are, all 25 or so of us. I hear my former psychologist saying that I make up the DID because of having read up on it too much. Ironically, she was the one most eager to give me new and exciting mental health diagnoses.

Mental illness labels have a function in getting insurance to pay for treatment. In addition, they may guide what treatment and support you can access. Self-labeling (self-diagnosis) may have the added benefit that you can access support without the approval of a mental health professional. That’s how I access support geared towards people with DID.

However, mental illness labels should not be limiting my experience of who I am. I am more than my mental illnesses. Here is a list of labels I’d like to be known for.


  • Wife

  • Daughter

  • Sister

  • Friend

  • Writer

  • Blogger

  • Creative

  • Introvert

  • Compassionate

  • Intelligent

  • Honest

  • Former psychology major

  • Disability rights activist

  • Mental health advocate

  • Survivor

What labels do you define yourself by?

She Walked Through Fire

She walked through fire but was not burned by it. Her body did not show a sign of the path she’d been traveling through the burning forest or her life. She did not feel pain. She had all feeling neatly folded away in the dirty laundry drawer in her mind. Over the years, walking through a little too many fires, she’d grown accustomed to not showing their effects. She was not burned – at least, not visibly so.

A few months ago, I read up on somatoform dissociation. It is where there’s a disconnect between your body and your mind and it shows itself physically, as opposed to psychologically. Psychological dissociation is a distortion in memory, sense of self or identity. Somatoform dissociation manifests itself in distortions to your physical experience. For example, you may not feel sensation in a particular body part for a while (not explained by the body part just having “fallen asleep”). Or you may have a strong aversion to a food or smell you normally like. You may even react differently to medications depending on your state of mind.

While it is unlikely that someone would not have physical burns from walking through an actual fire, the psychological equivalent describes perfectly what it is like to dissociate. In dissociation, you lock away the feelings or memories associated with a trauma into the unconscious. You walk through a psychological fire (experience a trauma) but don’t get burned – at least, not visibly so.

I once read in a women’s magazine about a person with dissociative identity disorder (DID). This woman’s doctor explained that everyone has a breaking point in life and this may be why people with DID may be able to hold it together for years after their early childhood trauma, but fall apart eventually. In other words, they lock away the pain and burns from walking through fire until a minor injury – hurting their index finger – tears open the horrible burn wounds. In my own case, I was fifteen when I first realized I dissociate, but 23 when I experienced this breaking point. I think the breaking point happened after I was attacked by a fellow patient on the resocialization unit of the psychiatric hospital. I wasn’t diagnosed with DID till more than a year later and that diagnosis has since been taken away, but the psychological burn wounds never disappeared.

This post is part of Reena’s Exploration Challenge #48.