Diagnonsense, Oh Diagnonsense!

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change du eto a general medical conditon instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up thee nxt day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

Still Afraid

One of Mama’s Losin’ It’s prompts for this week is to write about something you were afraid of as a child and to share whether you’re still afraid of it. Immediately, an interaction I had with my husband a few weeks ago came to mind that brought back my extreme fear of denatured alcohol.

My husband offered me a sip of vodka because I had a bad cold and he’d heard that strong drinks help with this. They don’t, but I wanted to try a sip anyway just to have an idea of its taste. Then we got talking about the time my ninth grade science teacher distilled alcohol and let us drink some. This would’ve been a totally stupid idea if he were any good at distilling, but well. I had it in mind that we had drank pure alcohol, which my husband said would’ve led to our esophaguses burning up in smoke. Turned out my teacher was really bad at distilling alcohol, because the vodka my husband gave me tasted stronger than I remembered the distilled alcohol tasting.

Then we got talking about mehtanol, a poisonous kind of alcohol, which surfaces at the first distilling round. I remember my father, who worked at my school back then, talking about how some students the year before me were either allowed to taste the first distilling round or almost did so despite not being allowed. I assume it was the latter even though memory tells me otherwise, as I’m pretty sure that teacher would’ve been fired and prosecuted for allowing students to taste something even remotely resembling methanol. My husband joked that if his teacher had allowed him to taste distilled alcohol, even if it was safe, he’d be tempted to fake methanol poisoning just to get the teacher fired.

I was by this time quite scared already. The evening of the alcohol tasting experience in ninth grade, I discovered my vision had worsened. This was due to a cataract, which is a known complication of my eye condition. However, I had the irrational thought for years that if I hadn’t tasted distilled alcohol, it wouldn’t have happened.

You see, I had and still have no clue about the signs of methanol poisoning other than blindness. Even though I ran a much higher risk of going blind from my own eye condition than from methanol poisoning, as soon as I learned about this, I was deathly afraid of methanol poisoning. Since denatured alcohol usually contains methanol, I was scared of that too. I would never touch any surface cleaned with denatured alcohol, afraid that I’d get methanol on my hands and lick it off. Worse yet, in my magical thinking, denatured alcohol could somehow replace tap water. Each time I was about to have a drink of water, I looked at the running tap water to see whether it was blue. After all, in the Netherlands, denatured alcohol is dyed blue.

I still have a pretty bad fear of denatured alcohol. For soap making, I use alcohol spray to make soap bubbles go away, but I somehow never made the connection. As soon as I did, I wanted to discard my denatured alcohol spray. After all, what if some leaked out of the bottle and somehow dripped onto my coconut oil, which I use for lip balm making? Both the spray alcohol bottle and the coconut oil can are tightly shut, but you never know.

I was also somehow scared that I’d accidentally drink denatured alcohol at home. My husband went looking for it to see whether he even had it in the house and he had. He joked that the bottle of denatured alcohol was next to the vodka, which of course made me freak out.

It’s not like I never handle any other poisonous products. I mean, soap colorants and fragrance oils are probably not the healthiest thing either. I also have a few shower products, which I use daily, which state clearly to keep them away from children. I reckon this is for good reason. However, it never crossed my mind to drink shower gel. Not that I would purposefully drink denatured alcohol, but if that can replace tap water, what substance can’t?

Mama’s Losin’ It

Currently – October 2016

Oh yeah, another week and a half have passed without me blogging. Originally, I was planning on participating in #Write31Days this month again, but I couldn’t think of a topic. Then when I had something in mind, I couldn’t get myself to write my first posts, because I was sick and tired all week-end after my sister’s wedding on Friday. So no pressure this month once again. Because it’s already late in the evening and I badly want to publish a post before midnight though, I thought I’d do “Currently” once again. This month’s co-host is Jacqui and our usual host is Anne.

Cheers-ing

I don’t drink alcohol, but I would like to give a big cheers to my sister and her husband for their wedding last Friday. They had their wedding ceremony on the beach. Though it was so windy I couldn’t hear my sister say her vows, it was a beautiful ceremony.

Organizing

My soaping supplies. I have tried to resist the urge to buy more supplies, because I still don’t know whether I’ll be able to soap at day activities once I leave the institution. However, since i still don’t know when I will be leaving the institution, I’ve also thought that I might as well enjoy the craft while I still can. My wheeled bag is so full it won’t close properly now and some plastic bags were tearing, so I had to re-organize my supplies. I originaly planned on keeping some out of the bag unless I’d need them, but I have no clue where else to store them.

Dreaming

Way too vividly, if you mean dreaming while asleep. I have always had vivid dreams and they got much more vivid since starting my antipsychotic in 2010. Though the dose of this medication has been the same for several years, my vivid dreams are getting worse. Yes, I say worse, because it’s no fun.

As for daydreaming, I don’t do that much lately. So much is still unclear that I have little to look forward to except for the very next moment. You see, I’m practising staying present and enjoying the moment more. So far, I’m not very good at it.

Buying

Soaping supplies like I said. I also bought some new clothes for my sister’s wedding, as well as some body care products.

Listening

I recently discovered some new-to-me country musicians that I like. I’m also listening to a lot of audio lectures from a company called Home Academy. I used to listen to the ones I’d bought or gotten as gifts many years ago. Recently, they were added to the library for the blind’s collection, so I can now listen to them virtually for free, sine the membership fee is way less than what I used to pay for individual magazines and lectures and suchlike. The lecture I most recently finished was on the atomic bomb. It had me vividly dreaming about mushroom clouds for days.

What have you been up to lately?

Blindness Isn’t Black or White

The Foundation Fighting Blindness has launched acontroversial campaign encouraging sighted people to blindfold themselves for a short time to see what it’s like to be blind. Most blind people I know are vehemently opposed to this idea. I am no exception. It’s however not because simulation is wrong by definition.

First, simulating disability is often seen as fundamentally wrong by the disabled. The reason is that you don’t know what it’s like to live your entire life or the rest of your life with a disability by putting on a blindfold, sitting in a wheelchair or trying out other disability simulations. You will be able to take off your simulated disability when you’re done with it, after all.

Though I mostly agree with this, I can see how simulation can be useful for relatives of someone with a disability to learn to understand the alternative ways in which the disabled accomplish everyday tasks. They will also experience, though to a lesser degree, the obstacles people with disabilities encounter as they use these alternative techniques. For example, when I was at my country’s blindness rehabilitation center in 2005, my parents tried to put jelly on a slice of bread while blindfolded. My mother and I made a mess, while my father didn’t. Then again, he noticed as he took off his blindfold that he’d placed the can of jelly, the butter, the bread etc. all around his own plate. In a similar way, sitting in a wheelchair can help able-bodied people understand the need for ramps.

However, by experiencing “disability” for a short while, you will not experience the systemic societal oppression that comes with being in the minority position of being disabled. You will not experience the psychological and social impacts of disability. You will not have time to adjust, but then again, you won’t need to have time to adjust.

Another problem specifically with blindfolding to see what it’s like to be blind, is that blindness comes in many forms. (I’m sure there are analogous explanations of this for other disabilities. For example, most wheelchair users can walk a short distance. However, since blindness is what I know best, I’ll go with that.) Blindness, in other words, isn’t black-or-white. Only a small percentage of people who are blind have always been totally blind (with no light perception) or went totally blind (with no light perception) in an instant at one point in their lives.

Most people have at least some viison, whether that be useful or not. Many people who say they are totally blind, in fact have light perception only. Light perception is the ability to tell whether it’s dark or light. In its most limited form, it is the ability to tell the difference between daylight and nighttime. Light projection is the ability to tell where the light comes from, such as where there are windows in a room. Since both light perception and light projection are measured with the eye doctor’s flashlight, not large sources of light like windows, it is possible to test as having light perception only when you really have some light projection. I am an example of this. When I went to the blindness rehabilitation center, they were initially informed by my doctor that I am totally blind, since in the doctor’s opinion I had no functional vision. I have heard from many people who have experienced true light perception only that indeed this would be the point at which they’d consider themselves completely funcitonally blind. However, this is the reason there’s a difference between functional vision and vision as measured by an ophthalmologist.

However, I always say that I am “blind.” This led to a particularly frustrating experience one time in 2010 or 2011, when I had to undergo oral surgery. One of the doctors or assistants said that I didn’t need a sheet over my eyes because I’m blind anyway. Guess what? Even those with the most limited forms of light perception can be bothered by a bright dentist’s light shining right into their eyes.

Then I didn’t even mention people who are judged to be functionally blind but who do have some very limited but useable vision. I was in this group from age eight till age eighteen. I had very limited color, form and object perception, but my parents and even psychologists working with the blind said I needed to accept the fact that I am blind. Maybe I wouldn’t have had that much trouble with it had they not constantly suggested that blind meant no useable vision. Visual techniques may not be the most efficient in many situations, but that doesn’t mean the vision isn’t there.

Currently – September 2016

Wow, summer flew by! Even though the weather is quite summerlike, unlike in July and most of August, it’s already September. I have several posts I would still like to write, but I am rather unmotivated for blogging here lately. It could be because my Dutch blog is three months old and it looks like this is going to be a keeper. I do like to write there, although I don’t write nearly as often as I used to write here. Anyway, because I’m not motivated for a proper blog post, I’d like to write a “Currently” post once again. Currently is hosted this time by Beth and of course Anne.

Reading

I’ve been reading a lot of books and not finishing any lately. I still didn’t finish Handle with Care by Jodi Picoult, which I started in June. I also started Still Alice by Lisa Genova then, but have been leaving that for so long that I recently started over.

A few days ago, I bought Do No Harm by Herny Marsh. It’s a book of stories from a neurosurgeon. There doesn’t seem to be anything about hydrocephalus or pediatric surgery in general in it. Still, it’s quite interesting.

Trying

Lotion making. I didn’t do much in the way of soap making lately, but on Tuesday, I tried once again to make a body lotion. It failed again, this time for completely different reasons than the last time (I guess that means I’m learning!). The whole lotion making thing sounds a bit more complicated than I initially thought it would be. However, as I watched a video tutorial on it that was recommended to me by some Dutch lotion makers yesterday, I was reassured that it also probably isn’t as complicated as some other people make it sound. For example, I forgot the heat and hold phase, which means you need to heat your oil and water phases separately to 70 degrees Celsius and keep them at that temperature for twenty minutes. Well, that doesn’t seem to need to be dome as precisely. We’ll see next time.

Hoping

To be more motivated and inspired to get things done. Like finishing those books I started, making soap and blogging. I now spend most of my time on Facebook or in bed. Would really like to get more productve.

Decorating

Nothing really. The last decorative soap I made was already two weeks ago. I have another one planned, but need to get the motivaiton to actually go about it.

To-Do Listing

I don’t have much on my to-do list at this moment, except for the things I already mentioned I’m hoping to accomplish. On Monday, I did finally cross off the routine medical exam I’d been delaying for months.

What are you currently up to?

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

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