Five Years Ago #Write28Days

Posted on by Astrid

Welcome to day four in #Write28Days. Today, I am not going with the word prompt. It is “Make” and maybe I can make the prompt fit into my post somehow (pun intended). Not sure though. Instead, I picked one of Mama Kat’s Writer’s Workshop prompts. It asks us what, if we could give ourself a snapshot five years ago of what our life would be like now, it would look like and how we would’ve felt.

Five years ago, I still resided in the psychiatric hospital with the intention of leaving for my and my husband’s then home by my 30th birthday on June 27, 2016. I still trusted my mental health professionals to a degree and had at least some trust in my ability to live with my husband. The whole saga of my changing diagnosis, or diagnonsense as I called it, hadn’t happened yet.

I just checked my old blog for what I’d written in February of 2016. I admitted, in some posts, that I still struggled with the reality that I hadn’t fulfilled most of my childhood dreams and yet wasn’t a total failure, in that I’d be living with my husband. I didn’t use the word “failure”, but my writing certainly connotes that I should feel like a failure if I need residential care for the rest of my life. Which possiblity I held open to an extent, and which indeed came true.

I mean, I got kicked out of the psych hospital not by the summer of 2016, but by May of 2017. Then lived with my husband for nearly 2 1/2 years, until I was accepted into the care facility.

If I could give myself a snapshot of my life right now, it’d likely be of my room here at the care facility with my one-on-one staff in it. I might give myself an additional snapshot of my and my husband’s house in Lobith to convey that we’re still together.

Honestly, I have no idea how I’d have felt about these snapshots back then. I mean, four years ago is easier. Then I’d certainly have been elated at knowing I’d eventually end up in long-term care despite all the attempts my psych hospital staff took to prevent me getting the care I need. But in early 2016, I may not have seen this need.

Probably, the most likely emotion I’d have felt is mistrust. I mean, how could I possibly ever get the level of care I never even openly admitted I needed? I mean, I never asked for one-on-one, but got it anyway. How is it possible that people truly saw this? I can hardly believe it now, let alone five years ago.

Looking back at my life five years ago, however, makes me so intensely appreciative of the life I have now! I thank the Lord for sending my former support coordinator, the Center for Consultation and Expertise consultant and my current staff into my life, as well as the funding authority people in charge. Without these people, I honestly don’t know where I’d be right now.

Mama’s Losin’ It

New Normal

Posted on by Astrid

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

Sky Is the Limit #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

Gratitude List (January 2, 2021) #TToT

Posted on by Astrid

Yay, it’s Saturday and that means I’m going to write another gratitude list. I didn’t specifically resolve to be more grateful this year, but I already set a goal to do a weekly gratitude list in November. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my extra one-on-one care got approved. The staff and manager will meet next week to discuss how to fill in the hours and whether extra staff will need to be hired for it. So far though, nothing will change for me, as I already had some one-on-one as of mid-November. I’m so glad it doesn’t stop though!

2. I am grateful for financial security. My long-term care copay is likely to increase by at least €70 a month this year, but it’s because my husband’s and my household income has increased. I’m pretty sure I can afford this increase without having to live extremely frugally.

3. Speaking of which, I am so grateful my husband bought a new-to-us car. We used to have a Suzuki Wagon R+, but that one wasn’t too comfortable on long drives. It also needed repairing anyway. Of course, buying another car rather than repairing your current one is rarely the economical choice (my husband calculated that it would be if we bought a very small car). He wanted some luxury though and so do I. We now have a Volkswagen Golf.

4. I am grateful for oliebollen and other new year’s snacks. I didn’t eat too many, but I did have some treats.

5. I am grateful for a relatively peaceful new year’s. My sister-in-law came by. My husband had made it clear beforehand that I could always retreat into the bedroom to go on my phone, so I did that a few times.

6. I am grateful for toast with sausages on it for lunch today. I’d never had this before, but it was good.

7. I am grateful for really good essential oil combinations in my diffuser. I even managed to make one that’s good even though there’s geranium in it. I normally hate that scent (don’t ask me why I bought it then), but combined with lavender, orange and cedarwood, it’s good.

8. I am grateful for a really nice nap this afternoon. I had the aforementioned combination of essential oils in my diffuser and slept like a log.

9. I am grateful the festivities are over with for now for a while. They were good, but I’d like to have some normal weeks now.

10. I am so grateful for still no COVID at my care home! I could post that one every week, because of course each week without COVID is a blessing, but well.

What are you grateful for?

2020: The Year in Review

Posted on by Astrid

So 2020 is almost over with, thank goodness! Not that it was a totally bad year for me personally, but I really hope 2021 is better for the world at large.

I started the year hoping to settle in at the care facility. I did, but it did take some more accommodating from the staff than I’d expected they would be willing to. In July, for this reason, I was granted the highest care profile for blind people (I had the second-highest until then). I felt very mixed emotions about it. I mean, even though I had originally asked my support coordinator to look at that care profile when applying for my long-term care funding, I do remember her saying I would definitely not qualify. It turned out that I did.

Then in November, after I’d been in some major crises, the staff suggested I sign an official request for extra care hours. I just heard this morning that it got approved. Next week, the staff and manager are going to discuss how to use the extra care and whether new staff will need to be hired.

I hoped to settle in at the day center. That didn’t work out, as the center closed down due to COVID in mid-March. It has since reopened to some of the homes, where clients can utilize a specific room for their home. However, many clients in my home fare better now that we get day activities from the home.

COVID also had its consequences for my marriage. I had just been trying to learn to use public transportation, like I’d hoped I could, when COVID hit the Netherlands and care facilities were closed to visitors. Even though we’re in a second lockdown now, my facility does allow visitors this time around. However, my husband and I agreed it wouldn’t be sensible for me to use public transportation as of now.

As a result of the first lockdown, I didn’t see my husband at all for March, April and most of May. Thankfully, our marriage survived.

Looking back at my hopes for 2020, I see I did pretty well considering the circumstances. I mean, I didn’t settle in at the day center or learn to use public transportation, but like I said above, that’s to blame on COVID.

Health-wise, I didn’t lose weight, but I am much more active now than I was in 2019 and I do eat okay too. I could certainly do better, like I tried for some weeks in late October and early November. I’ll need to activate my water reminder app again too.

With respect to my mental health, I certainly took good care of that. I had had it as a secret wish to lower my Abilify dose, but I never did. However, that’s okay considering I wasn’t doing as great mentally as I expected to be. I hope I did finally find a PRN medication that helps me though.

I also blogged much more regularly in 2020 than in 2019. I didn’t do any other writing projects, mostly because I feel too inadequate.

Lastly, that self-care excuse of a goal I definitely did attain. I love love love essential oils.

How was your 2020?

An Okay Day

Posted on by Astrid

I once again want to write, but am not too inspired to write anything more than a diary entry. That’s okay though. After all, when I first created this blog, I intended it to be my personal space to share my feelings and thoughts.

Today was a relatively good day. It was better than yesterday at least. Yesterday evening, I landed in a bit of a crisis. The extra staff who had been having dinner with me in my room, said that, while I’d do stuff on the computer, she’d be back “in a while”. That confused me and my first response was to elope. Thankfully, the staff foudn me pretty soon, as it was freezing cold outside.

I talked some to her about my needs and wants re extra support and what they’d do with me. She suggested I get a daily or weekly calendar that has activities on it for me to do with the staff. She also understood that her being unclear about when she’d be back, was confusing for me.

Thankfully, today, I feel okay. I went for a walk in the morning. Then at 2PM, my mother-in-law came by. We had a cup of coffee in my room and then went for a walk. I got in over 13K steps total today, even though in the evening, it was raining so I couldn’t go for another walk.

My mother-in-law offered to buy me an interactive stuffed cat. It’s not really a toy, as it can’t be handled harshly, so isn’t suited for young children. It was specifically developed for adults with dementia. The cat makes soothing sounds, purrs and moves a little when stroked, meows, etc. It obviously has an on/off switch. I am not sure how crazy this would be, as it’s obviously not a real pet. However, I think I’d really like it. I seem to remember at day activities there was an interactive dog, but I’m not sure that one was the same sort of thing as the cat my mother-in-law is thinking of buying.

The evening was okay. I played some card games of mau-mau with the extra staff. I also helped her make coffee or tea for my fellow clients. That is, I told her which cups everyone uses and whether they drink coffee or tea. I actually enjoyed myself a little being in the communal room.

I started reading Hatch, the second book in Kenneth Oppel’s alien invasion trilogy, which came out last Tuesday. So far, I am totally rooting for the main characters. I mean, I hardly even care whether the aliens wipe out all of humankind if they leave our heroes alone. That may be a bit weird, but I at least know it isn’t real.

Today Is Sunday, November 29

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I was originally planning on writing a #WeekendCoffeeShare post, but then discovered that the linky isn’t up this week. That’s okay, since I didn’t really know what to write for it anyway. However, now I’m left with a blank screen and yet with the intention of writing an entry today.

Today was a mostly good day. I lay in bed until nearly 10AM this morning. I had been awake last night for a pretty long while pondering faith.

When I got up, I got dressed and then ate breakfast. We usually have boiled eggs on week-ends, but had eaten them all yesterday. I just had one slice of bread with peanut butter.

Then my husband called. I was in a bit of a low mood, so he recommended I get some sunshine on my face. The sun was shining beautifully here this morning. I had a walk outside.

Then I had lunch – two bowls of tomato soup. I spent the first part of the afternoon napping. After having coffee at around 2:30PM, the evening shift arrived. She took me for a walk right after handover.

I was a bit stressed about possibly needing to eat in the dining room again, but the evening staff informed the extra staff, who came at 4:30, that I would have dinner in my room. It was pretty good, although the meal company’s definition of “vegetable rice” is rice with a few tiny chunks of carrot thrown in.

I went for a walk again in the evening. At one point, I somehow tripped over my own feet and fell. I’m okay though – just a tiny scrape on my knee.

I did break my step record again this week. In fact, I reached my daily goal of 10K steps everyday this week except for Friday. Unfortunately, my sister, who is my only friend on Fitbit, got in even more steps.

When the staff were having their own meal, I listened to yet another church podcast. First United Methodist Church of Baton Rouge didn’t have their service online yet, so I chose First United Methodist Church of Austin, TX. The sermon’s theme was believing in hope. It was a very touching sermon that included several references to Holocaust victims believing in hope back then in spite of it being nowhere in sight. Of course, this year of pandemic is nothing compared to World War II, but this means we are even more required to keep hope.

After I had my evening coffee and soft drink with chips, I did get a little nervous when I found out a staff I don’t really know that well has the extra shift tomorrow evening. I’m trying to remember to stay in the present though and not to worry about things that may come.

Gratitude List (November 28, 2020) #TToT

Posted on by Astrid

Hello everyone. Like I mentioned yesterday, I have not been more grateful than I am now in a long while. Part of the reason is my recent depression, but part is also my increased attitude of gratitude. For this reason, I am trying to make posting about gratitude a weekly habit again. As always, I am linking up with Ten Things of Thankful (#TToT).

1. Quiet dinners in my room. Last week and early in the week, I was very stressed out about needing to eat in the communal room with the other clients. This has been a stressor for me for a long while already. I was given the opportunity to eat in my room if I didn’t cope in the communal room, but was struggling to say I didn’t cope on time. For this reason, me and the staff decided I for now will always have dinner in my room. Yesterday, a staff noted that I eat much slower now.

2. Extra staff. I may’ve mentioned this before, but there is now an extra staff member to support me in the evenings. I am not yet sure how they will cover this financially, but we’ll see. Today, I thought there wouldn’t be an extra staffer, but thankfully there was.

3. Podcasts. I’ve mainly been listening to church services. I am so grateful for my podcast app that enables me to listen to church services from all over the world. Oh and of course also other podcasts, like the Parcast Network originals.

4. The YouVersion Bible app. I have only a three-day streak so far, because I missed one day of Bible reading on Wednesday. I am determined to make this streak much longer though. Right now, I’m on day six of a seven-day devotional on forgiveness.

5. Soaping supplies. My day activities staff ordered 3kg each of white and clear soap base as well as a few micas (powdered colorants). She already ordered them early last week, but they finally arrived last Thursday. In addition, my husband brought my Christmas tree soap mold. I am really looking forward to soaping again.

6. Cake decorating. In addition to the extra staff in the evenings, there’s an extra staff in the morning on week-ends. The one who had this shift today, asked me earlier in the week whether I’d like to decorate cupcakes with her today. We ended up using regular slices of cake, not cupcakes, because these are easier to decorate. I loved it.

7. Beautiful skies and sunsets. I regret not having taken a photo of the pink sky we had on Monday. I didn’t really see it, but did see some and loved the staff’s description. Also, on Sunday, I saw the sunset. This was really cool.

8. Eating lunch in the car. My husband came by this afternoon to take me out to lunch. Since all restaurants and such are closed due to COVID, we drove to a Subway drive-through. We each had a chicken teriyaki wrap. It was delicious!

9. Homemade wraps. Okay, they weren’t as good as the Subway chicken teriyaki one, but they were good too. We made wraps with chicken and lettuce on Monday and, because we had some wraps still left over, made some more with minced meat and beans on Thursday.

10. Good talks with my husband. He keeps me interested with his knowledge of theology in particular.

What have you been grateful for lately?

A Profound Appt with My CPN

Posted on by Astrid

Yesterday I had another appt with my community psychiatric nurse (CPN). At first, we went into how I’m doing at the moment. Then my CPN scheduled some appts for me with my nurse practitioner. Last Monday, after all, he and the behavior specialist from my care facility had finally come to the conclusion that I need to do some work on stabilizing myselves and developing inner cooperation before I can do EMDR or another form of trauma therapy. At first, the secretary said the first appt she had available was late December. It turned out to be December 17, so that’s pretty early considering how long I’ve been waiting already.

Then we got to discuss some issues relating to my diagnosis or the lack thereof. These were mostly theoretical, since I have no idea what my current diagnosis is and I really don’t care. I mean, the most recent treatment guidelines here in the Netherlands for complex dissociative disorders, aren’t suited to me (or most plurals, honestly), so I have no reason to want such a diagnosis. All I want is help in getting the inner turmoil under control.

Then I somehow got to mention my former psychiatrist’s comment when first considering assessing me for DID/OSDD in the summer of 2018. She held both of my hands and said: “You have just one body.” Then she went on to explain that, while she was holding our hands, none of us could put our fingers in our ears and pretend not to listen.

We then repeated this exercise. A staff always attends our appts with mental health with us. She now held both our hands and said that we can stay at the care facility. Someone asked cautiously: “Even if I need more help than I get now?” She then reassured us that yes, even if we need more help, we can stay here.

Then the staff asked our CPN what she’s supposed to do when we openly switch, as we had the day before. My CPN seemed not to know, so I suggested she do not elicit it, but do not fight it when it happens either. After all, when she insists that “Astrid” come back, this may create some trouble since “Astrid” is either everyone or no-one at all.

I really hope our nurse practitioner isn’t going to insist people only talk to “Astrid”, as the current guidelines on DID/OSDD seem to suggest as far as I know. I mean, we are okay all listening to the body’s name and won’t sign our names on E-mails or the like when it’s not appropriate, but one of our main issues is that there is no host who somehow “owns” the others. As such, the daily living parts or apparently normal parts or whatever don’t have access to every bit of information needed to cooperate.

#WeekendCoffeeShare (November 15, 2020)

Posted on by Astrid

Hi everyone! How are you doing? Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee, but there’s still plenty left for you all. We also have various flavors of tea and there’s cold water in the fridge I think. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was a rather rough one. I am already feeling slightly better now though. I’m still struggling to keep busy when I’m alone, but it’s okay.

If we were having coffee, I would tell you that the weather is pretty mild for november. It’s raining some of the time, but it’s also sunny some of the time and it’s pretty warm for this time of the year, roughly 15°C.

If we were having coffee, I would be proud to tell you that I got in over 65K steps this week so far. That’s a record! I’m probably still going for another walk this evening, so I may break my active heartrate zone minutes record of last week according to my Fitbit too.

If we were having coffee, I would tell you that I’m so immensely grateful for the extra supports my staff put in place for me. Like I mentioned earlier in the week, I was extremely depressed earlier and was seeing no way I could manage at this care home or in this world as a whole for that matter. Thankfully, I got some one-on-one support in the evenings, which are the hardest for me.

I did feel some pressure when a staff said she hoped that in a few weeks, I would not need as much support. This caused me some considerable anxiety, as I worried I’d be kicked out of this home if I didn’t improve in a few weeks. The staff didn’t mean it that way though.

If we were having coffee, lastly I would tell you that my husband came by yesterday. We drove for a bit and then went for a short nature walk. My husband had also brought me some apple pie his father had baked for his birthday. I did struggle to eat it properly whilst in the car, which I felt intense shame about. My husband was okay with it though.