List of Things that Make Me Me

During the past week and a half, a lot has happened, and yet so little has. I spoke to the patient advocate regardng the recent diagnonsense. She recommended a second opinion at another hospital. For various reasons, I decided against this. My psychologist did consult a psychiatrist at the brain injury unit, who told her she was right that brain injury and autism shouldn’t really be diagnosed together, but the same goes for borderline personality disorder and brain injury. Now I’m left with a very confusing diagnosis. I think it’s going to be personality change due to a general medical condition (brain injury), but my psychologist also said something about generalized anxiety disorder and attachment disorder possibly going onto my diagnosis. And I thought I was the one who collected labels.

This is all very confusing, because I rely on concrete labels for defining myself. How coincidental that I just opened a journaling eBook to a random prompt and it told me to make a list of my uniqueness, my marvelousness, my talents. These are not psychiatric labels, because, although some people consider autism a gift, I cannot say that autism itself should be one of my talents. With no further ado, here is my great list of things that make me me.


  • I am intelligent. I have a lot of knowledge and I can articulate it well most of the time. I am good at analyzing stuff.

  • I can persever(at)e if I truly want to achieve something.

  • I am sensitive. Sometimes, this sensitivity causes me to experience overwhelm to the point where I appear uncaring, but I truly care about other people.

  • I am creative. I write, I craft, I make soap.

  • I have a pretty cynical sense of humor. I remember on my first day in the psychiatric hospital, telling jokes about how you could tell the patients and staff apart.

  • I am stubborn and I like it. My husband jokes that my parents haven’t made up their minds about anything since the 1980s. I am thankful not to be that extreme, but I can really want to be right sometimes.

  • I am a semi-successful blogger even though I haven’t been blogging as much over the past few months.

  • I am a good wife.


This list should or could probably be longer. It also didn’t really cheer me up. However, it does help me see that I’m more than my confusing set of diagnosense.

Diagnonsense Once Again

A few weeks ago, I wrote about my disappointment at not finding the right day activities or home support. Unfortunately, it didn’t end there. Over the past few weeks, I have been finding out about the details of my changing diagnosis. Or rather, diagnonsense, as it’s all extremely odd. Let me explain.

In late June, my psychologist pulled me out of day activities to inform me she had changed my descriptive diagnosis. A descriptive diagnosis is a brief description of what’s wrong with the patient, which should be a little more personalized than the patient’s DSM-IV (we still use DSM-IV here, which is weird enough) classification. Her descriptive diagnosis was mostly okay’ish, with one exception: she said that autism as well as dissociative identity disorder and PTSD had been previously diagnosed, but these weren’t too clear. At first, I thought she meant just the DID/PTSD wasn’t clear. I was wrong. She had, in fact, removed autism from my diagnosis.

Now I have been assessed for autism three times in the past and was diagnosed with it all these three times. There were some questions as to whether some of my problems are due to blindness, but overall it was clear that there was more that was going on with me and this “more” is most likely somewhere along the autism spectrum.

I however was also born prematurely and had a brain bleed leading to hydrocephalus (“water-on-the-brain”) as a baby. This was known to all people who previously diagnosed me as autistic and my first diagnostician even added hydrocephalus to axis III (for physical health problems) of my DSM-IV classification. This was when I was in outpatient treatment. For some reason, hydrocephalus was never on axis III while I was hospitalized. It still isn’t. Yet my psychologist says she cannot diagnose autism because of the complications associatedd with my premature birth. Never mind that there is an enormous amount of literature showing that former preemies and children with infantile hydrocephalus are more likely to be autistic than those without these experiences.

Now like I said, my psychologist didn’t add hydrocephalus, neonatal brain injury or anything like that to my diagnosis. She did briefly mention it in my descriptive diagnosis, but it’s your DSM-IV diagnosis which determines your “diagnosis-treatment combination”, ie. what care you’ll get. My DSM-IV classification now lists borderline personality disorder as my diagnosis. Oh and adjustment disorder, which my psychologist says explains why I can’t handle changing situations. It doesn’t. An adjustment disorder is an extreme, disabling response to an identified stressor. For example, when I lived independently and this caused me to land in crisis, I was diagnosed with adjustment disorder to justify my hospitalization. Back then, adjustment disorder was a justified cause for care under the basic (mandatory) insurance pacakage. It no longer is. Long story short: essentially, I’m stuck with just a borderline personality disorder diagnosis to base my care on. It doesn’t seem to matter that BPD is an adult-onset disorder and I’ve had problems all my life. It doesn’t seem to matter that BPD doesn’t explain my sensory and cognitive overload. Oh wait, maybe that’s just me trying to manipulate people into not exercising their right to overload me.

Ten Ways in Which I’m Blessed

This week was a tough one. I have been stressed almost constantly over a lot of things. For this reason, I’m extra happy to find out that Finish the Sentence Friday is about blessings this week. It’s supposed to be a joint linky with Tuesday Ten, but I can’t find the Tuesday Ten post on blessings. Maybe it’ll go live next Tuesday. However, let me write a list of ways in which I’m blessed anyway. I hope it’ll cheer me up. Here goes.


  • I have my husband. I’m so glad I met him nine years ago.

  • I have my home in the tiny village.

  • I have my family. My parents are still in good health and my grandma is still alive and relatively well for a 92-year-old too.

  • I have my cat Barry.

  • I don’t have to worry about money most of the time.

  • I am in okay physical health.

  • I have my computer, with which I can connect to the Internet and interact with mostly supportive people.

  • I can write and express myself creatively.

  • I have my faith. Even if no-one else loved me, God does.

  • I am alive. I am not always happy about this, but right now, I try to see it as a blessing.

It was a bit hard to write this list, but I’m so happy I got to do it. I hope you are blessed in many ways too.

Disappointment #WotW

This week was a lot less exciting than last week. It was really a big disappointment. That’s why I choose this as my word of the week.

On Monday, I had an okay day. I went to day activities and made a simple soap. There was only one activity staff so I had to be able to do the soaping mostly independently. The staff complimented me on the fact that I was able to be relatively independent indeed.

On Tuesday, I was supposed to leave for the potential new day activity place at 10AM. Since I got up really early, I wanted to go to day activities at my unit for a bit before the cab arrived. Unfortunately, the day activity room was closed because there was no staff available. Both of our regular staff are on vacation and apparently all subs had to work someplace else. An E-mal had been sent out notifying the nursing staff that the day activity room was closed, but only the nurses at the locked ward had received it. I was early, so my nurse went to morning report or something after dropping me off. Twenty minutes later, I panicked because no activity staff had shown up. A nurse from the locked unit came by and informed me that the day activity room was closed. Fortunately, someone was able to call my unit so that a nurse could come pick me up.

The cab arrived exactly on time and drove me to the supported employment building in the city where the day activity place is. Supported employment has largely been discontinued, so the building now houses other services, like the day activity place. The cab driver at first couldn’t find the entrance. Once he found it, I announced my arrival to the receptionist. It turned out the day activity place was in a faraway corner of the building and you had to walk through many corridors to get there. I was nearly run over by a supported employment person on a forklift truck. Those long corridors and the forklift truck gave me the impression that I would never be able to get from reception to the day activity room independently. Quite a bummer.

I arrived in a cafeteria where a large number of people were drinking coffee and chattering. I was seated by a day activity staff and we chatted some. A consumer got seated across the table from me and tried to chat me up. Not what I wanted that moment. Finally, my independent consumer advocate arrived and we got talking about what I expected out of day activities. I mentioned my new hobby of soap making, but we didn’t go into that. The staff member talked about ceramics and such. I couldn’t follow half the conversation by now, because I was overloaded.

We went to check out the actual arts room, which was quite crowded too. It was a disappointment. Next Tuesday, we’re going to have a look at a day activity place that’s part of the same organization but in another city. This place is supposed to be a little less overwhelming. I hope so.

My mother-in-law came to pick me up and offered to have lunch together. We ate a delicious chicken salad at what my husband later said was quite an expensive restaurant. My mother-in-law had gotten the idea of eating out there and I wasn’t there when she paid for us, so I won’t let myself be consumed with guilt. When she dropped me off at home, I gave her one of the goat’s milk soaps with honey that I’d made last week. She did allow me to use the pic she took, but I wasn’t able to get it off Facebook. I slept the entire afternoon.

On Weednesday, I had a meeting at home with a person from the mental health agency’s home support team. Two people came by and they hardly introduced themselves. That set the tone for the meeting. The whole meeting was one big disappointment. It turns out they can only offer two hours a week of home support and you don’t get to be able to phone someone if needed inbetween appointments. I can’t remember much else, except that they asked me how I see myself in two years’ time. I couldn’t answer that question right then and they talked about how it’s my life and I need to be able to get meaning out of it and stuff. As if I don’t know that.

Finally, they said that I might benefit from the assertive community treatment team helping me and then home support coming by twice a week to unburden assertive community treatment. I’m not sure I want anything to do with this home support team at all, given how they treated me in this meeting. They were truly all patronizing and yet telling me I need to be able to do this and that and whatever. Since my current treatment provider is already trying to get me signed up for the assertive community treatment team, I’m not interfering with that. When the people left, I was so disappointed I had destructive urges. Thankfully, I got to go back to the institution that afternoon.

Thursday and Friday went by in a blur. I only went to day activities for a short while on Thursday, because a male sub who didn’t know stuff was there. My named nurse sent an E-mail to my psychologist asking her to schedule an appointment with me. I’d done the same early that week, but still my psychologist replied that if I wanted an appointment, I could contact her. Go figure.

Altogether, this whole week was filled with smaller and bigger disappointments. I am really hoping next week is better.

The Reading Residence

Upbeat #WotW

Another more than a week has gone by. This week was pretty intense. I have been in a relatively good mood most of the time. Also, I made some good progress within the last few days. For this week, I am participating in Word of the Week again and my word is “upbeat”.

Monday started out not too great. I had a conflict with one of my activity staff. In the morning, I had been busy with quite a difficult soap making project and had asked for help a little too many times. My activity staff had, or so she said, been attending to me constantly. She didn’t say so till the end of the morning and said that I couldn’t make soap in the afternoon, because she’d be the only staff in attendance. I was pissed and had an anger outburst. After I calmed down a bit the nurses asked what was up. I told them and a nurse accompanied me to the activity room after lunch to talk to the activity staff. Both of us had been overreacting a bit it turned out and she had been offering help sometmes when it wasn’t needed. In the afternoon, I made an easier-to-make soap and did it mostly independently. On Tuesday and Wednesday I also made soap and had a lot of fun doing so.

On Thursday, I would be leaving for home in the afternoon. I had gotten a letter from the local social consultation team and had handed it to my social worker. I had some trouble scheduling an appointment with her, but eventually, we worked something out. Turned out the letter wasn’t anything we needed to do anything about.

Early in the afternoon, I got a call from my independent consumer advocate telling me that he had made an appointment for me to go take a look at a day activity place next Tuesday. The place had been mentioned during the kitchen table talk with the social consultant and independent consumer advocate, but I had apparently erroneously thought that my town didn’t have a contract with this organization. I will visit the place on Tuesday at 11AM. Depending on how I like that place, we may take a look at another place that’s part of the same organization later on.

The consumer advocate also told me that the social consultant would be calling me about an appointment with the mental health agency for home support services. She called me while I was in the cab on my way home. I will have a meeting with the mental health agency’s home support person on Wednesday at 9AM. My consumer advocate will also be attending that meeting with me. If this and the day activity thing go well, the social consultant is hoping to proceed with getting things arranged that same week, because she will be on maternity leave after that. For those who don’t know, a social consultant is a local civil service person who makes decisions about funding for community care. Because I am now institutionalized and will be going home, a new decision regardng funding will need to be made. Of course, I don’t expect things to move that fast and the social consultant can of course hand over my case to a colleague. Ttill I’m hoping they’ll reach a decision about funding for home care and day activities within a few weeks. That will make it much easier for me to prepare for actual discharge out of the institution.

I went home Thursday evening. On Friday, my husband had to be at work by 6AM, so the alarm clock went off at 4:20. I slept some more but, once my husband was off to work, I could hardly sleep any longer. I had somewhat of a difficult morning, but practising mindfulness helped me get through it. I was upbeat in the afternoon, when a Facebook friend who also makes soap came by. I had met her specifically through soap making, but we also had some fun chatting. We made a lip balm, sugar scrub and goat’s milk melt and pour soap with honey.

Today, I’m tired but still upbeat. The nurses made us fresh macaroni. That’s one of my ward’s summer traditions. I must honestly say my husban’ds macaroni is better, but then again this macaroni is much, much better than the lame excuse for food we get everyday.

Like I said, except for Monday, I’ve been feelign mostly upbeat this week. I am still loving my soaping craft and an looking forward to the progress we’ll make next week.

The Reading Residence

If Social Media Dies, Make Soap

Gosh, over a week has passed and I didn’t write. It’s not because I didn’t feel inspired as much. After all, July is National Journal Writing MOnth. So are January, April and October, but I hadn’t heard about NaJoWriMo until late April. This month, I’ve had a prompt delivered to my inbox everyday, but I didn’t feel like writing. The reason is that I am in the midst of a new perseveration. Yeah, you guessed it right, I’ve jumped head first into the soap making craft. On Mama’s Losin’ It, one of the writing prompts this week asks what hobby you’d pick up if social media died tomorrow. This is what I’d do.

I have been making various different kinds of soaps. I do melt and pour soaping, so of course I didn’t technically make the soap myself, but I have tried various kinds of soap for the craft. So far, I like the cheapest kind best, but that supplier takes three to six business days to deliver and I’d run out of soap last Friday. That, plus the SLES that’s in that soap, made me decide to get all-natural soap at another store. I especially don’t like this soap’s pre-melted texture, but once melted, it’s easy to work with. The vendor warned that it may not be the best soap to work with layers with, but I made a layered soap that turned out quite good. One of the colors is supposed to be gold but it turned out yellowish white because I hadn’t shaken up the colorant enough before use. I will look into how to get it to look better.

Layered Soap

I have also tried my hand at body lotion making. The instructions I posted last week, weren’t correct. I made body lotions using a recipe I found online and almost everything went wrong that could’ve gone wrong. Like, I didn’t know that I had to heat the water phase, so I didn’t do this. This meant no or little emusification. The site I got the recipe from is also into all-natural stuff, so they probably deliberately skipped the preservative. Since I made a lotion out of mint tea, that meant it’d gone off within a day. I have decided not to spend any money on this hobby for a month, since I already spent way too much on it so far, so I cannot buy the preservative until then. No lotion making for a while then.

I do, however, greatly enjoy this craft. One of the good parts about it is, of course, sharing my work. I do this on Facebook, so if that died tomorrow, I might not enjoy it as much. Then again, if no-one used social media anymore because it died, maybe I’d connect with other soapers through other venues. Forums and E-mail lists aren’t social media, right?

Speaking of Facebook, however, I did connect with a woman who doesn’t live too far from the tiny village and who is willing to soap with me at home. She’ll first visit me next week. I don’t know whether I could make real connections with people if any online connection for social purposes died. After all, I met all my long-time acquaintances online as well as my husband.

That doesn’t mean I wouldn’t enjoy the soaping craft at all. Maybe there’d actually not be as much pressure if social media didn’t exist, because I wouldn’t know what great soaps other people make. I currently make the majority of my soaps for people I know in real life, too. They’re staff and fellow patients at my institution, so I do sometimes wonder whether I’ll still enjoy this craft when I just have my husband and our tiny circle of acquaintances. We’ll just have to see.

Mama’s Losin’ It

Currently – July 2016

I skipped the Currently linky, hosted by Anne and Jenna last month. This month, however, the words appealed to me, so I’m participating again.

Toasting

This word was what drew my attention to this moth’s post. One of the nurses was laid off in late June and she gave us patients a great toaster. The nurses already had one in the office, but we weren’t allowed to use it, because we had been bad at keeping ours clean, which had then broken down. Now, so far, we’re keeping the new toaster in good condition. I toasted a croque monsieur on it yesterday and it was delicious.

Going

For some walks. My new gravatar is a picture taken about three weeks ago when my husband and I walked along the water a few towns away from the tiny village we live in. Other than that, I’m not going anywhere much except for extending my week-ends on home leave. I am planning on starting ot stay home on Mondays by the 18th.

Smelling

Blue Soap

Vanilla, coconut and banana everywhere. These are the three fragrance oils that came with my soap making starter kit. I have truly contracted the soap making virus and have made so many soap hearts already I have almost lost count. Above is a picture of one of my best ones. People are now also asking for other scents, so I ordered three new fragrance oils that are due to arrive tomorrow: strawberry, cinnamon and violets. I also ordered a new mold.

Wearing

T-shirts that I’ve become too big for (or let’s just say that they’ve shrunk). I hate clothes shopping, so I tried to order some new T-shirts online, but the style I wanted was sold out.

Wishlisting

Way too many soap making supplies. I ordered many of the things I had on my wishlist already, but still want more. The store I ordered my starter kit at celebrates its eleventh anniversary today, so they’re offering discounts till Sunday. Of course, discounts don’t mean you won’t spend money.

I’m hoping my husband can also take me to a budget store, so I can look for storage boxes for my fragrance oils and colorants, empty lotion bottles, packaging and some other things.

Soap making aside, however, I badly want a new blender, since someone took apart my last one and neither I nor the nurses can fix it so it won’t leak.

What have you been up to lately?

Making Soap and Lotions

Yay, I’m 30! My birthday itself wasn’t too special. My husband had to work, so he came by to take me home on Monday evening. First, we stopped by the “electric kettle shop”, ie. the electronics store, to get me an electric kettle. We had one already, but you couldn’t take off the kettle so had to fill the whole thing while it’s in the power socket. I also didn’t like its size. My husband bought me a 0.8l kettle.

I loved the week-end before my birthday, however. My sister and her boyfriend came by on Saturday. They gave me a shower gel, shampoo and pure lanolin. Lanolin is used in creams and lotions as an emulsifier. They didn’t know when they bought these gifts that I plan on making my own body creams and lotions, so it was a wonderful coincidence.

Lanolin

The best gift I got for my birthday was however a gift I gave myself: a starter kit for making your own melt and pour soap. Melt and pour soap is made by cutting pure soap into small chucnks and melting them in the microwave or au bain-marie in a soap kettle or pan. I made my first soaps at day activities and we renamed one of the smaller pans the soap pan, because you’ll never get the soap taste out of it once you’ve used a pan for soaping. My art therapist, who also works at day activities but not that particular day, hoped it wasn’t the milk pan. I think it was.

Soap

Once the soap is melted, you pour it into a measuring cup and add colorant and scent. For my first soap, I used red colorant and coconut scent. You stir to make the colorant and scent blend with the soap. Then you pour the soap into a mold. I had a bit too little soap to fill the mold, so my first soap is a bit thin. I chose the heart shape to give to my husband. Now that I’ve made some other, more well-formed soaps, I’m getting queries from everyone asking me to make a soap for them. Most so far don’t want anything I haven’t tried yet, but one woman wants a pink one. That will be a challenge. I’ve already made a green one by mixing blue and yellow colorant, but am not too sure how I’ll make pink with just red, yellow and blue colorants. I don’t know what type of colorant is used in the starter kit, so I can’t buy new colorant and see whether they have a pink one yet.

I also just today bought myself some tools and materials for making lotions. You make a lotion by melting lanolin and a plant-based oil, such as sweet almond oil, making sure they’re well-blended. This is the oily component. Once it’s melted, you need to add the water component, which consists of distilled water, herbal tea or a hydrosol (floral water). You can also add aloe vera juice to the water component. You need to add the water component drop by drop while constantly stirring. Then, let the lotion cool off to at most 30 degrees Celsius before adding essetial oil or fragrance oil. My husband thougth that essential oils are skin irritants, because the packaging said so, and so you cannot add them to lotions even when diluted. I have yet to ask whether this is true in one of the safe essential oil use groups on Facebook, since I’m pretty sure that, if diluted to at max 3%, you should be safe.

A Thank You Letter to a Bus Driver

This is getting old, but I have been extremely uninspired lately. It’s like everytime I try to do blogging in Dutch again, I neglect this blog. It wasn’t even so much that I didn’t want to write, but I didn’t kow what to write about. A few days ago, however, I saw a blog post in which a person wrote a thank you letter to their genetic counselor. Other people were invited to write thank you letters to people you wouldn’t expect they’d be thankful for. This got me thinking. At first, I wanted to write a thank you letter to the psychiatrist who admitted me to hospital in 2007. While writing this letter, however, I thought of another person who was important to me that night: the bus driver who overheard me make a suicidal threat and called the police. I am writing a letter to him today.

Dear bus driver,

You may have forgotten about me. At least, I hope you have. Thhat’d mean you didn’t experience too much stress from what I did while on your bus. I haven’t forgotten about you. I don’t know your name, but I want to thank you anyway.

I was the person who threatened to kill herself while sitting on your bus on the evening of November 2, 2007. I told someone’s voicemail the details of my suicide plan. You overheard me, although a fellow passenger said you merely heard me cry. She probably just said that to quiet my mind. I heard you tell the police that you would be at the train station by 8:15 PM. By that, I judged I’d got onto the 8:01 bus at the bus stop near the training home I used to reside in. You dropped me off at the train station and the police took over and took me to the police station, where I was seen by the mental health crisis service.

I want you to know that I’m well now. I’m not fully recovered from my mental illness, but I’m a lot better than I was back then. I remembered you for years, which was causing me to find it hard to travel the bus in your city. I feared I’d run into you. Now, I know that you did your job and you did it well.

I could bore you with a long story of my mental illness and recovery, but that would probably stress you out. In case you’re wondering, however, I want you to be assured that I’m happy that I didn’t kill myself that evening. Now I know that, somewhere between the bus and where I wanted to kill myself, someone probably would’ve stepped in before I would actually be dead. However, you happened to be that person to step in. Thank you for that.

Astrid

Top Ten Plans for This Summer

It’s (almost) summertime. The weather has been quite good here lately. Particularly last week, the weather was lovely. This week, it’s getting slightly cooler and we’ve had some rain. However, the weather is still good enough to be outside in a T-shirt without a jacket. That’s one thing I love about spring and summer.

One of Mama’s Losin’ It’s prompts for this week is to share your top ten summer plans. I am really looking forward to this summer and I’d love to share my plans with you. Many are the same as last year’s, but unlike then, I did already make some of my plans happen.


  1. Go swimming. This is one of the items on last year’s bucke tlist that I couldn’t cross off then. This year, I’m participatng in a four-day swimming event this very week. I’m swimming only 100 meters each day, which is the shortest distance you could do. So far, I’ve completed two days of the event, that is really five days, already. You only need to complete four out of five days for the medal, but I plan on swimming each day.

  2. Have a barbecue. This is on last year’s list too. I didn’t think that I’d make this year’s barbecue on the institution unit, but now I think I will. It hasn’t been planned yet, but I heard the head nurse say she was going to get the DJ we have each year booked again.

  3. Sit in the garden. My home garden this time. I didn’t know last year of course that this year I’d have a real garden at home. The unit garden is also going to get remodeled soon.

  4. Eat strawberries, blackberries, blackcurrants, etc. I got raspberries from the market last week, but we don’t have them in the garden. The shrub my husband bought died before we could plant it. We do have many other berries, however. I don’t know how well they’ll do their first year, but I already ate a strawberry out of our garden last week.
  5. Go for walks. I walked form our old apartment to the institution a few times last year. This year, our walks have been in the tiny village. I hope to go to the woods sometime this summer too.

  6. Spend time with family. I’ve got to have an item on the list that I didn’t have last year. My sister and my parents are both coming over to our home next week (if my sister can get the day off) to celebrate my birthday.

  7. Eat the head nurse’s French fries and/or macaroni. There’s a nurse who lives in Turkey most of the year who comes over to work at our unit for the summers. It’s a tradition that she and the head nurse make macaroni from scratch once each year. It doesn’t sound that special, I know, but for people who normally get microwave meals everyday, it is. I’ve also heard the head nurse has plans for making us French fries on a Sunday in July. She makes fries about once a month, but usually on Saturdays, when I’m home.

  8. Wear my new dress. I already wore a skirt several times this year. I also bought two new dresses, one of which I already wore. I want to wear the other one too.

  9. Do lots of reading. This was one of the things I didn’t do enough of last year, even though I could. This year, it’s even easier, since I finally got a full Bookshare membership. I plan on reading a few books that I’ve wanted to read forever but never got down to buying as eBooks. Not that I couldn’t have bought them as eBooks, but I was planning on getting a Bookshare membership all along and so delayed getting the books. Reading books in DAISY format is still easier than reading eBooks. Of course, getting them from Bookshare, which is like a library for print disabled people, is cheaper too. I will review the books that I read here too.

  10. Write. I haven’t been blogging here as much as I’d like to this month or last month. After all, I’ve been feeling pretty uninspired. I hope to be inspired soon.


What are your plans for this summer?

Mama’s Losin’ It