Mental Health Ramble

Posted on by Astrid

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

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

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

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

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

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

CP Conference Last Saturday

Posted on by Astrid

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Activities That Give Me Inner Peace

Posted on by Astrid

I’ve been feeling a bit low again, but not as low as I was early last month. I’m not even really depressed, but just rather uninspired. I’d rather play games on my iPHone than do something productive, like blogging. To get myself writing again, I looked at The Self Exploration Journal once again. One of the prompts is about activities that give you inner peace. Here goes.

1. Yoga. I really need to do this more often. I don’t practice yoga much, as it feels like exercise yet doesn’t lead to weight loss. However, it does have other benefits. For example, it can help with my flexibility. It can also definitely help me find inner peace.

2. Meditation. I have Insight Timer, a free meditation app, on my phone. I love it, but I don’t practice meditation nearly enough. I tried it again yesterday, but when I was in the middle of a guided meditation, my husband came home.

3. Listening to soothing music. I used to always have calming whale sounds on when in the snoezelen (sensory) room at my old day activities. Unfortunately, I couldn’t copy the CD when moving day activities and it’s no longer being sold. I have yet to try to listen to my own soothing music on Spotify when in the sensory room. I really want to do more imagery-based activities using soothing music too.

4. Walking. I love going for walks. It truly helps me process my thoughts and move towards greater inner peace. It’s a more active way of creating inner balance, whereas the above three activities are more passive. I mean, yes, yoga requires movement, but it doesn’t require as much movement as does walking.

5. Exercise. Going on the elliptical has the same effect as walking, but amplified. I do this alone, whereas I always go on walks with other people. This means that I can quietly process my thoughts when on the elliptical, while at the same time getting my much-needed activity.

6. Writing. I really want to do this everyday, like I did when starting this blog. I really want to do more freewrites or diary entries too. This should definitely help me process my thoughts and gain inner peace.

What activities give you inner peace?

Weight Loss (Or Rather, Weight Gain) Update

Posted on by Astrid

It’s been months since I last posted an update on my weight loss and healthier living journey. My last update was very positive. This one, not so, but it has a silver lining.

I had not at all been following my diet. Not that I generally follow a specific diet, but when trying to lose weight, I try to moderate my food intake and limit myself on snacks and sweets. I don’t want to completely deny myself any sweets or snacks, but I really had been snacking far too much.

I wasn’t motivated to expose myself on the scale, so I didn’t weigh myself. Today though I did and the result was as expected: I’m now 71.3kg. This means I gained 2.4kg or roughly 5lbs in these three months. My BMI is over 30 once again.

Back three months ago, I was at my lowest weight in five years and had been thinking I could reach a weight in the lower sixties by the end of the year. Obviously, now I can’t. I’m not even sure my ultimate goal is to be at a healthy weight anymore, which for my height is 58kg. I had originally intended to reach that by January of 2020. Now I think I’d need to be content if I can get and keep my weight under 70kg and hence my BMI under 30.

Exercise-wise, I’ve not been doing as well as I wanted to either. I had set myself a goal for October of getting active everyday. Though it looks like I met that goal, I have to be more creative with what I consider “activity” than I’d originally intended on being. Today though was a great day, in that I got 95 active minutes according to my Fitbit and reached my daily step goal of 10,000 steps. Now that has me end this post on a positive note!

Developing My Fighting Spirit

Posted on by Astrid

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

Gratitude List (October 26, 2018) #TToT

Posted on by Astrid

Man, I really am falling into a writing rut. I don’t even know why. I’m still not feeling too well, but I wouldn’t say I’m seriously depressed either. For a bit in early October, I did feel extremely low, bu I picked up the pieces again reasonalby soon.

Today, to get myself motivated for writing again, I’m participating once again in #TToT. It’s not a weekly gratitude list anymore and I may be sharing some things I’ve been grateful for over the past few weeks.

1. A skirt-wearing day in October! This was already a few weeks ago, but I’m still so thankful for it. About two weeks ago, the temperature rose to 26 degrees Celsius and I loved it!

Generally speaking, the weather has been extremely mild here with hardly any rain. We got some rain only over the last few days and that wasn’t a lot. Today is one of the first days it’s really rather cold.

2. Sleep. Like I said above, fall weather came late this year but it well and truly came. I am very sensitive to cold, so I’ve been complaining for a few days that it’s cold already. This means that nothng’s cozier than crawling under the covers against my husband or with my sensory cat. The sensory cat is a soft toy that can be put in the microwave and then gives off heat and a lavender scent.

3. Swimming. At day activities, we go swimming every other Tuesday. Two weeks ago, I was a bit sick, so didn’t go. This week I did though. It was lovely. My Fitbit activity tracker says I swam 1200m total, which I can’t believe but oh well.

4. A full day at day activities. Three weeks ago, I got permission to come to day activities one full day a week in addition to the three other mornings. I now go on Tuesdays for a full day and Mondays, Wednesdays and Fridays in the morning. I am still settling in a bit but so far I love it.

5. Making smoothies. I really, really need to get into a healthier eating habit again. I haven’t been on the scale in months and I’ve probably gained lots of weight. To get myself motivated, I bought a lot of frozen fruit and a can of soy milk last Monday. Bananas were sold out, so my husband bought those on Tuesday. Yesterday, we made a banana-strawberry-soy milk smoothe and it was delicious!

6. Horseback riding again. Some of my fellow clients at day activities go horseback riding at my riding school on Friday afternoons. I go on Friday afternoons too, but usally the class after theirs. Today, one of these other clients was on vacation, so my staff offered to ask whether I could come in her place and I could. My assigned support worker from day activities walked beside my horse. It was a lot of fun!

7. My very accommodating staff. My support coordinator and home support worker are going out of their way to help me. So are my day activities staff. Particularly, they offered me to come to day activities two full days on December 27 and 28, since the other days of that week, the center is closed for Christmas. They’ll have room for me even on that Thursday, which is normally my day off. I’m so grateful for this!

8. Accessible games on the iPhone. I never took much of an interest in accessible computer games, because I believed most would be very boring. Now this week I decided to take a look at the AppleVis directory of iOS apps in the Games category. Of course, most games that are really popular with sighted people, are totally inaccessible. However, some accessible games are pretty cool after all. I so far downloaded Dice World, which is a collection of six dice games, and Alter Ego.

Alter Ego was originally created as a fully text-based game in 1986 but was adapted for use on the smartphone. It is a game in which the scenario is that you’re born and will eventually die. The life you lead in between will depend on your answers to a lot of multiple-choice questions. On my first round playing, I chose to be a very angry, rebellious baby and ended up with burns from an iron in infancy and killed by a kidnapper in childhood.

9. Twister fries! I have no idea whether twister fries exist in other parts of the world and, if so, whether they’re really called twister fries. They are my favorite type of fries, but they had apparently been taken off the menu at my local cafeteria. Last week at his once-a-week round to the cafeteria, my husband informed me that he had a nice surprise for me and it turned out they were back. I enjoyed them both last week and this week. I also love love love the African-style burger they have on the menu.

10. My mood being slightly better. Like I said, I had a really low few days earlier this month. Over the past two weeks or so, my mood seems to have been slowly but steadily improving. I cannot say I feel good, but I don’t feel that bad either.

What I’d Put Into a Self-Care Kit

Posted on by Astrid

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?

Dreams I Had for Myself as a Child #Write31Days

Posted on by Astrid

Welcome to day 18 in #Write31Days. Today’s post is all about dreams and life visions. Specifically, I am sharing the dreams I had for myself as a child.

The first dream I remember having about what I’d be when I’d grow up, was a writer. I may’ve said as a KIndergartner that I wanted to be a princess or whatever, but as soon as I could write with some confidence, I wanted to make my career out of that. I remember my parents telling me pretty early on that writers usually don’t make a living writing, but I didn’t care.

As I said before, I started out wanting to write fiction. I didn’t keep a journal consistently until I was thirteen and fiction was all that I knew before then. I didn’t get access to the Internet until age fifteen, but by the time I had an Internet connection, I was hooked on non-fiction.

Another dream I had for myself as an older child and teen, was to become a teacher. My ideas varied as to which grade or subject I’d like to teach. I definitely looked up to my teachers, so it’s no surprise I wanted to be one.

When I was around twelve, I started to deveop a dream of becoming a psychologist. I wanted to help children who were likely to fall through the cracks, as I had a feeling I was. I started hoping every episode of my parents’ favorite news program had a feature on kids with psychological problems. Once, there was an episode on about autism and I was hooked. This was nearly ten years before my own autism diagnosis. I had a feeling I was somehow like the boy in the program. Similar with a seventeen-year-old girl who was being restrained in a psychiatric hospital in around 1997. She was too smart for intellectual disability services but didn’t belong in psychiatry either. Something clicked with me, but obviously I couldn’t put my finger to it. I still really can’t.

When I was sixteen, I developed another dream. I wanted to study in the United States once in college. I would be majoring in American studies at university in Nijmegen, which'd offer motivated, talented students the opportunity to study in the U.S. for six months in their third year. I was at the time pretty sure I'd be talented enough. I loved reading up about American cities on City-Data.com.

Looking back, obviously, I didn’t make any of my dreams come true. I write, but not for profit and I don’t intend on it ever at all. I have some education in psychology, but am nowhere near a degree.

At the back of my mind, there always was that seventeen-year-old girl in the isolation room in the psychiatric hospital. I’ve not become her either, but I’ve come close. Then I rose up above my fate and now I’m an advocate. I’m happy as I am now.

What I Like About My Body #Write31Days

Posted on by Astrid

Welcome to day 17 in #Write31Days. Man, this challenge gets hard and I have almost half the month still in front of me. Then again, I can show my persistence by continuing with it anyway. Today, I have yet another post about my body for you. I am going to describe the aspects of my body I like.

My body image tends to fluctuate a lot. Some of my insiders are not adjusted to living in an adult body, and as such they hate my feminine figure. I am quite curvy with large breasts, so I understand that’s difficult for the child and young teen alters. I must say though that most of the adult insiders are pretty content with my feminine body. It helps that my husband is attracted to my curves too.

The first thing I like about my body is my hair. I have long, dark hair. I need to make a hairdresser’s appointment soon, as it’s been almost six months since I had a haircut.

I also like my femininely narrow shoulders. My husband occasionally uses a quote from Schopenhauer about women with their narrow shoulders and broad hips being inferior. He doesn’t mean it seriously though and I also like my hips, although they’re not terribly broad.

Another thing I like about my body are my hands. I have pretty thin wrists and fair hands. Skip my nails for now, as I tend to bite them.

Lastly, as of recently, I’ve developed a greater appreciation of my feet. I used to have terrible toenail fungus. That is, until my husband sent me to the doctor and I got oral medication for it, since the topically-applied stuff wasn’t working. I still don’t really like my feet, but I don’t hate them as much as I used to.

What parts of your body do you like?

Resisting an Impulse #Write31Days

Posted on by Astrid

Welcoe to day 16 in #Write31Days. Today, I picekd yet another prompt from The Self Exploation Journal, but I twisted it around. Thhe prompt was to write about the last time you did something impulsive. Instead, I am going to write about the last tire I resisted a destructive impulse

I have been struggling a lot over the past few weeks. My husband has been working extremely long horus this past week and has been very stressed about it. Thankfully, he contacted his manager on it today and will be working slightly more normal hours from tomorrow on. However, today he wasn’t home till 9:30PM.

I hadn’t slept very well last night, because my husband was stressed out yesterday and I took over his stress. In my mind, it became worse and worse, until I was imagining my husband dying in a crash with his truck today. Needless to say, I was quite tired when I got to day activities in the morning.

On top of that, one of the regular staff was off sick, so there was a substitute. Because this regular staff would remain on sick leave tomorrow, the staff worked out who to find as a sub. Wednesdays are the busiest days at day activities, so I was quite scared that one staff would need to handle the full group on her own.

By 2:30PM, I was very irritable. I didn’t understand the jokes people were cracking. I was constantly worrying too about how to make it through the evening. I got an impulse to elope. Instead, I decided to try to walk around the building on my own while the staff checked on me tha tI was headed in the right direction. I did fine.

My staff did notice that I wasn’t coping thoguh. She asked whom I could call if I wasn’t coping while home. I decided to call my mother-in-law right then and she informed me my husband had already asked that I could eat with my in-laws.

Had I actually given in to the impulse and run off, people would’ve been a lot more worried than they already were. Besides, since this was my second time going to day activities for a full day, I might have been suspended. I don’t think I’d have gotten in any physical danger had I actually run off, as the day activities place is in a very quiet neighborhood. However, I’m still glad I didn’t give in to the urge.