Gratitude List (July 17, 2020) #TToT

Posted on by Astrid

It’s been a while since I last did a gratitude post. I’m feeling okay. Not good, not too bad either. However, gratitude will be helpful at any moment. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. A good meeting with the cerebral palsy charity. We “met” online via Microsoft Teams last Saturday. It was nice to get to know some people in my area, as this was a provincial meeting. We’ll “meet” again online on September 5.

2. Paracetamol. I was in some pain over the week-end. Thankfully, some paracetamol did help.

3. Lorazepam. I took one last Saturday too, as I was feeling a bit overwhelmed and wanted to sleep well. I got an okay night’s sleep and haven’t needed to take more lorazepam since.

4. Jewelry-making. I didn’t do too much of it, but I did make a keychain for my sister-in-law today. For the rest of the week, I’ve just been looking at all the wonderful things I could do.

5. Physical therapy. This Wednesday, the facility’s physical therapist came by. We had asked her to after the meeting with the CP charity had made it clear that I have no reason to keep going on with pain if there are still options. The PT assessed me and concluded I have tension all over. She put tape around the inside of my right knee, because I overextend it otherwise. That’s helped some.

6. A weighted blanket. I had asked my staff a while ago to inquire about me getting a weighted blanket. The PT said she had one with balls in it on hand. I didn’t like that one, but we did set things in motion so that I can rent and maybe later buy a weighted blanket.

7. Blueberries and candy. I went to the local supermarket with a staff today to by candy, but also ended up buying blueberries. These are all eaten now. The candies aren’t yet.

8. My husband. I talked to him on the phone a few times this week. On Monday, I was quite upset because I feel I may be deteriorating. My husband reassured me that regardless, I am okay the way I am.

I can’t think of anything else and I realize some of these are really blessing-in-disguise type of gratefuls, but oh well.

What are you grateful for?

Such an Inner Strength

Posted on by Astrid

Yesterday, I listened to the latest sermon at Holy Covenant UCC. As regular readers know, I’m a very progressive believer, hardly even calling myself a Christian. I tend to doubt God’s presence a lot. I mean, why is there so much suffering in the world when God is loving and ever present?

The pastor delivering the sermon said that Jesus could’ve had these same doubts while on the cross. Yet what seemed like God the Father abandoning His son was, according to the pastor, the greatest moment of all creation, as God opened the gates of Heaven.

One of the things I find hard to deal with in Christianity is the idea that only certain people will make it to Heaven. I mean, according to the Bible, only 144,000 people who ever existed will be allowed entry into the Kingdom of God. My husband uses this as one of his reasons for being an atheist. My former pastor at the psych hospital though said that this number may be symbolic: twelve times twelve times a thousand is a lot! I like that. Some other progressive Christians at one point told me that there’s a theological theory that says that all of Hell was shattered on the cross when Jesus died for our sins.

At first, when listening to the Holy Covenant UCC sermon, I felt weird. The pastor said that God had hidden his treasure in the plain and ordinary, that is, us. That had me go uhm. I somehow wish I was more than just an ordinary being and a sinner at that. Isn’t that a bit narcissistic of me?

Then the pastor went on to tell the church that we are more than our outward appearance. In other words, we are more than ordinary beings. Because of God, we each harbor a huge inner strength. A treasure. We are more than how we come across to others. We are also more than our experiences. We are more than the racism, sexism, ableism, etc. we endured. Through God, we can overcome the odds!

This doesn’t mean we shouldn’t fight for what is right. The pastor, who I assume is of color, talked about the great abolitionists and civil rights activists, who maintained their faith in the presence of immense hardship. They kept going despite opposition and oppression. That is what we should do. Don’t give up, but fight knowing that God is by our side. Ultimately, even if evil prospers right now, it will not always.

Roles I Want to Play in the Future

Posted on by Astrid

A few weeks ago, I wrote a post about the roles I play. This post was inspired by the first prompt in the journaling workbook The Year of You. The second prompt is to write about the roles you would like to play in the future. Here goes.

1. I want to be a student. I don’t mean that I want to go back to college full-time. That place has been passed and I’ll never revisit it. However, I would definitely like to study at the Open University or some other distance-learning college again. I considered signing up for the developmental psychology course at the OU for this fall. I’m not sure I’m ready though.

2. I want to be a writer. Of course, I am a blogger already and I have one piece of mine published in an anthology. However, I really want to publish more. I’m not so sure I’ll ever write my memoir as I was some years ago, but some short pieces should be doable.

3. I want to be a volunteer. I really hope to do some type of community service, ideally putting my knowledge of disability and mental health to use. For example, maybe I’ll do a recovery course again and maybe in the future even lead one.

4. I want to be an advocate. I am already with this blog, but I really want to be more of a voice for the disability community in the Netherlands.

5. I want to be a crafter. That is, I want to be able to find a hobby that I enjoy. I no longer have it as a goal that I’ll be able to do it independently.

6. I want to be a guide dog owner. I really hope to be able to get a guide dog sometime in the future. I’m not sure that is a realistic goal, but I can dream, right? I mean, ideally, I’d have a psychiatric service dog/guide dog combo. That would be awesome!

That’s it so far. Last year, I might’ve added wanting to be a homeowner, but that goal can be crossed off.

What roles would you like to play in the future?

Tuesday, July 14

Posted on by Astrid

Hi all on this rainy Tuesday evening. Here in the Netherlands at least, the summer is hardly a summer to be honest. What a contrast with last year!

I’m feeling uninspired today, but I do want to write. I hope yesterday’s post didn’t just attract the engagement because I predicted it wouldn’t. Regardless, I think I like the ability to ramble.

I started jewelry-making back up again last week. It’s still pretty hard and frustrating. I mean, I have to gather the right supplies and I keep forgetting something. Last week, I ordered wire, but it was too thick for the thinnest needle and yet the beads wouldn’t fit over the slightly thicker needle. I as a result managed to make only one simple bracelet so far.

Today I ordered some additional supplies, but I forgot to order clasps. My husband asked me to make a bracelet or necklace for his sister, who had her birthday last week. Not that she wears a lot of jewelry, but he thought it might be a kind gesture. I ordered some heart with dog paws pendants, because she loves dogs. Here’s hoping I can make something decent-looking with the supplies I have at hand right now.

In other news, I got a haircut on Thursday. My hair is quite a bit shorter than it was before. I like its current length though. It’s kind of wavy now and feels a bit tougher when brushing through it with my fingers. Since that’s one of my main stims and I like the feel, I think I may keep my hair at this length. My husband has so far only seen the picture, as he didn’t visit last week-end. I will be going to our house this coming
Saturday though.

Today despite the rain I managed three walks. Not long walks, but long enough. I also did a short yoga practice. I just googled yoga for beginners and selected a YouTube video. I didn’t complete the full practice, but I managed to do some. My day activities staff helped me by explaining what the woman in the video was doing. I liked it.

I also listened to some women’s magazine on audio. It was a nice way of unwinding.

I didn’t rest as much as I had originally planned to, but still I feel okay. It’s now nearly 9PM and, though I’m physically tired, I’m not as overwhelmed as I was yesterday.

Hope you all are doing well.

I Am Overwhelmed

Posted on by Astrid

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.

A Year Ago

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Adult Separation Anxiety

Posted on by Astrid

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

Emotional Development

Posted on by Astrid

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.

Book Review: Diagnosis by Lisa Sanders

Posted on by Astrid

While scrolling over the new and noteworthy books on Apple Books about a month ago, I came across a Dutch book called Diagnose by Lisa Sanders. Sanders is a Dutch name too, so I initially assumed the book was originally Dutch. I don’t generally read many Dutch books and I certainly don’t buy them. Imagine my delight when I found out that the original title is Diagnosis and the book is originally written in English. Imagine my further delight when I found that Diagnosis is available on Bookshare, so I got it practically for free.

Summary

As a Yale School of Medicine physician, the New York Times bestselling author of Every Patient Tells a Story, and an inspiration and adviser for the hit Fox TV drama House, M.D., Lisa Sanders has seen it all. And yet she is often confounded by the cases she describes in her column: unexpected collections of symptoms that she and other physicians struggle to diagnose.

A twenty-eight-year-old man, vacationing in the Bahamas for his birthday, tries some barracuda for dinner. Hours later, he collapses on the dance floor with crippling stomach pains. A middle-aged woman returns to her doctor, after visiting two days earlier with a mild rash on the back of her hands. Now the rash has turned purple and has spread across her entire body in whiplike streaks. A young elephant trainer in a traveling circus, once head-butted by a rogue zebra, is suddenly beset with splitting headaches, as if someone were “slamming a door inside his head.”

In each of these cases, the path to diagnosis–and treatment–is winding, sometimes frustratingly unclear. Dr. Sanders shows how making the right diagnosis requires expertise, painstaking procedure, and sometimes a little luck. Intricate, gripping, and full of twists and turns, Diagnosis puts readers in the doctor’s place. It lets them see what doctors see, feel the uncertainty they feel–and experience the thrill when the puzzle is finally solved.

Review

I love medical storytelling. Still, I have quite a few books written by doctors about their patients that I just can’t finish. Diagnosis definitely wasn’t one of them! I didn’t finish it as quickly as I do some books, but that’s probably because this is a collection of stories. For this reason, at the end of a story, I can shove the book aside without wondeirng how the story will end.

The book is organized into eight parts, each describing a main symptom. As said in the introduction, there are only so many ways in which the body can show that it is unwell and yet there are over 90,000 known diseases. Isn’t that fascinating?

With some stories, I guessed correctly what was going on before it was mentioned. The man collapsing after eating barracuda was one of them (no, I won’t spoil it!). I found this pretty cool. With others, I had no idea until the end. This was fascinating too.

I loved the author’s writing style. Sanders uses clear but not too simple language. She also usually starts her stories in the heat of the moment, gripping my interest immediately. Overall, this was a great book. I gave it a five-star rating on Goodreads.

Book Details

Title: Diagnosis: Solving the Most Baffling Medical Mysteries
Author: Lisa Sanders
Publisher: Broadway Books
Publication Date: August 13, 2019

Read With Me

We Ordered Some Beads

Posted on by Astrid

I’m feeling pretty uninspired to write today. I’m still feeling upset about last Friday’s meeting with the nurse practitioner. I mean, I don’t want to claim to have a dissociative disorder, even though on this blog I do sort of claim this. At least, we claim to be multiple. I’m not sure we fully are, but we’re definitely not fully singlet either.

We sent an E-mail to my assigned support worker explaining our issues with the nurse practitioner’s comments. She might forward it to my other staff and maybe the behavior specialist too. The behavior specialist replied to her E-mail from last Friday that I could ask my nurse practitioner why he thinks ACT is proper therapy for me and why he doesn’t want me to do EMDR. Some of us were pretty upset at her reply too.

Today we were upset at not being able to do much with respect to day activities. It rained all day, so we could only take one walk. Other than that, we sat in the living room or in my room. At the end of the day, our crafty part came up with some ideas. We might try making some bead jewelry. It doesn’t have to be professional-looking, but it could be cool.

So I ordered some beads at a store called Creadream. I originally intended on ordering glass beads, but ended up going with plastic ones. They were cheaper and the store had a larger variety of shapes. I got some round beads, some cubes, some rectangles and even some butterflies. Some of the purple ones were on a discounted price, so only like €0.66 for 25 grams (about 45 beads I think it said).

I also ordered some wire and elastic, including memory wire. This is a type of metallic wire that is shaped like a coil that fits around your arm. It can be used for making bracelets. I forgot to order pliers to cut and bend the wire with, but I or my day activities staff might be able to find some later. I also forgot to order a beading needle.

I think the littles will definitely enjoy working with all the different shapes and colors. Of course, we can’t see the colors, but we have some memory of what they look like. We ordered mostly purple ones, like I said, but also some pink, green and I can’t remember what else.

Now I constantly feel shame when I refer to the littles or write in first person plural or the like. I know I can’t fully be myself with mental health professionals, because they aren’t my friends, but why can’t I be myselves on here? My CPN knows the address to this blog and has occasionally read it, but yeah.