Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

Share Your World (May 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining Share Your World. It’s a lovely blog challenge on WordPress where bloggers answer four questions, with an optional gratitude section at the end. Here goes.

1. Have you ever lied about your age?
Not really purposefully lied, but my insiders/alters/parts (I most likely have a dissociative disorder) have different ages from my body age and they’ve sometimes been rather in your face with them, even though we rarely experience full-on amnesia and, as a result, usually know our body’s legal age on some level.

2. Is there any time in your life you would like to relive?
The year 2021 and the first half of 2022. Those were, all things considered, the happiest times of my life. I wish I could go back in time and make one different choice then too, which my regular readers will know: I’d travel back to April of 2022 and undo my decision to ask to move out of the care facility in Raalte.

3. Do you own any antiques?
Not at all.

4. Would you like to know some of the history of places you’ve visited?
Not sure. I did visit the institution museum a few weeks back and that was fun, but I don’t really care for historic buildings or anything.

The Wednesday HodgePodge (October 4, 2023)

Posted on by Astrid

Hi everyone. It’s been a few weeks since I participated, so I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. What’s something that scares you?
Too many things to mention, although I’m not one to have many classic phobias. My main one is toxiphobia, a fear of poisons.

2. Do you care where the food you eat comes from? To what degree?
Not really, honestly. Not that I get a say in where my care home food comes from in terms of the supermarket they order from – it’s some type of countrywide supplier specifically for care agencies. However, it’s not like I’d care much even if I did have a say. I do care about having a say in the specific foods I get to eat, which thankfully I have. When it comes to organic or not and the country my food originally comes from, I honestly am too lazy and stingy to care even when I go to the brick-and-mortar supermarket in the next town.

3. What’s something you wish you’d spent more time doing when you were younger?
Be creative. I did love writing as a child and spent a good amount of time on that, but I definitely wish I’d spent more time on other creative outlets.

4. Let’s play autumn this or that….pumpkin spice or apple cider? Corn maze or haunted house? Horror film or Hallmark movie? Blanket or sweatshirt? Watch football or watch the World Series? Foliage-red, yellow or orange?
Pumpkin spice for sure. Corn maze, though I don’t care for it either (but I hate haunted houses). Neither on the movies, but a Hallmark one if I have to choose, since the reason I hate haunted houses is because I startle extremely easily and also I don’t want nightmares. Is the blanket supposed to go onto me in the same way as a sweatshirt? Then I’ll choose a sweatshirt because it’s easier to keep in place while I type. Neither on the sports thing. That is, I’ve never heard of the World Series but assume it’s sports-related too and I never watch sports. All three colors are beautiful.

5. This time last year where were you and what were you doing?
Such an intriguing question especially today. October 4, 2022 was my last full day in the care facility in Raalte. Most of my furniture was being moved to the intensive support home (my now old care home) that day, as Raalte’s transportation person was off on Wednesdays (something thankfully my staff did realize beforehand, unlike with the recent move). Can you imagine I lived in three different care homes over the past year?

6. Insert your own random thought here.
October 4, 2023. I’ve been living in my current care home for just over two weeks and am beginning to consciously or unconsciously erase my connection to the intensive support home. Honestly, I feel awful when a temp worker tells me he knows me from there. That being said, it’s not just because it could hardly get worse than there, that my current home feels like a better fit.

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Joy in December

Posted on by Astrid

Hi all on this chilly, rainy last Friday of 2022. Today I’m sharing my last update on my word of the year, which is “JOY”. I’m joining the Word of the Year linky as well as Lisa’s One Word link-up.

The month of December started out with something that would have brought me exhilirating joy under different circumstances but brought just a weak smile to my face now: a visit from my two former day activities staff, complete with a full-on lunch buffet paid for by them. I honestly feel a bit guilty for possibly having ruined their meal with my talks of how much I was struggling in the care home. Then again, to be fair to myself, this was just a day after I’d hit the proverbial brick wall.

The next week saw some glimmers of hope, as my now assigned staff (yay, they finally assigned me a staff other than the support coordinator) convinced me to give a new day schedule a try. This finally gave me some opportunities for crafty activities.

Then on the 23rd, I had the meeting with my now assigned staff, the behavior specialist, my mother-in-law and the mediator. This again gave me some glimmers of hope.

Oh wait, “HOPE” wasn’t my word of the year for 2022. It was “JOY”. And I found joy even when the times were trying. A helpful resource in this has been a sheet of paper with two sides on it that I fill out each evening: on one side, I can list two things that didn’t go too well during the day, but on the other, I need to list two things that did go well. Yesterday’s things that did go well included several nice walks and having finished crafting a polymer clay unicorn. After giving it its finishing touches, I just gave the unicorn to my assigned staff, who for the most part helped me create it.

Overall, the month of December definitely included some important reasons for joy. I am also generally pleased with the word I chose as my word of the year. Even though later in the year it was quite a struggle to find joy, I liked to look for opportunities for it in the ordinary.

The Wednesday HodgePodge (December 28, 2022)

Posted on by Astrid

Hi everyone. It’s the last Wednesday of 2022, so I’m joining Joyce for the Wednesday HodgePodge. Here goes.

1. Did you set any goals for the new year this time last year? Did you meet them or miss the mark? Tell us more if you’re comfortable sharing.
I don’t set goals. Instead, I call them hopes. That removes the pressure, but they’re pretty much the same. I shared my hopes for 2022 on January 1. For the most part, I sort of reached them early on but completely started falling off course after the move to my current care home. I’m slowly getting back on track.

2. What are three words that might describe the kind of person you were this past year or describe in some way how your life looked?
Transition, stress, creativity.

3. What’s something new you ate, saw, heard, or experienced in 2022? What did you think?
This year was a massively transitional year, since I experienced the move to what I thought would be my dream care home but initially turned into a nightmare. It’s slowly starting to get better though. As a result, I experienced many new things. A tiny one is the fact that I ate mash for the first time in a looong while.

4. Oxford Dictionary has announced it’s word of the year for 2022, and it’s this-goblin mode. Huh? Have you ever heard this phrase? Used this phrase?
No, never heard of it until now. Consequently, I have no idea what it means and honestly don’t know whether I want to know. Oh wait, no, I don’t want to find out, as I just saw that Joyce had the definition written out and I skipped over it. Or maybe now I do want to find out.

If you were in charge, what word would you declare word of the year for 2022?
Russification, if that’s a word in English too (it is in Dutch). We need to be aware of what’s happening in Ukraine and especially the parts of it completely under Russian control, like Mariupol.

5. Any special plans for an end of year celebration in your house or town? The travel channel says the world’s best New Year’s Eve celebrations will happen in Copacabana Beach-Rio de Janeiro, the Orlando theme parks in Florida, London, Sydney, New York’s Time Square, Edinburgh Scotland, and Paris. If you could attend any one of these which would you choose? Tell us why?
I will be going to Lobith for New Year’s . My husband just ordered a waffle maker online so that we can make waffles then. He also said he bought Airfryer snacks.

If I had to choose any of these destinations to visit during New Year’s, it’d be Sydney because it’s summer there right now. Then again, I don’t have any desire to visit there otherwise. I would like to go to Edinburgh someday, but not in winter.

6. Insert your own random thought here.
I’m probably going to end the year on a positive note, as my support coordinator returned from her vacation yesterday and did part of my one-on-one this evening. That’s not the positive news. The positive news is the fact that she said my day schedule is good as it is.

Joy in October and November

Posted on by Astrid

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

Joy in September

Posted on by Astrid

Hi everyone. How is it the end of September already? I pretty much forgot the month is almost over, but since it is, it’s time for me to write an update on my word of the year: “JOY”. I am linking up with Lisa’s One Word linky. I am also joining the Word of the Year linky.

September started out with good news, as, on the very first day of the month, I heard that I was first on the waiting list for what I now refer to as the prospective new care home. This gave me some renewed energy, but also stress. I was warned that the wait might still be six months or so. “That’s super quick,” my husband said. Well, those who’ve read my blog over the past couple of weeks, know that it’s gone even quicker: tomorrow, I am to decide whether I want to move to the home and, if I want to (which I do), I’ll move next Wednesday, October 5.

Considering this, the whole month of September flew by in a bit of a haze, in which I was both hyper with excitement and overwhelmed with worry. I am still both as I type this post, in fact. Consequently, I hardly found any clear moments of joy that were just that. After all, things I did feel delight or joy over, were also laden with some level of anxiety or anticipation. For example, at my husband’s and my visit to Ikea, I was thinking about what to buy for the new home.

The month of September, of course, was also the month my iPhone and Apple Watch got their updates and I got really used to my Apple Watch. For the first few weeks of the month, I was compulsively moving to get far beyond my activity goals. This past Friday, my dietitian did caution me against it. The next day, with some emotional struggle, I let a day go by when I didn’t fill all my rings. That seems to have broken the cycle, as I’m now able to be a bit easier on myself. For example, yesterday I was sick to my stomach all day, so really didn’t feel like exercising. I am relieved I am able to permit myself these days now too.

For the month of October, I am of course looking forward to enjoying real food, as the staff at the new home cook homemade meals everyday there. I am also hoping to enjoy visits from family, as I have a few planned already for the first week at my new home. Other than that, I am expecting to have a lot of getting used to at the new home, so I’m just hoping to enjoy some everyday pleasures.

Joy in August

Posted on by Astrid

Hi all. It’s the end of the month once again and this means I’m reflecting on my word of the year, which is “JOY”. I am linking up with the Word of the Year linky as well as with Lisa’s One Word linky.

The month of July was hard and it ended on an even more difficult note with a health scare. Did I even tell you all about it? Well, I had bloodwork done at the end of July as part of my annual health screening and, while most results came back normal, my EGFR, an indication of kidney function, did not. It’s supposed to be above 90 in healthy adults, had been 81 last year and my nurse practitioner back then had said that anything above 70 was still acceptable. Well, it was 68 this time around. I checked with my GP and he said this could be a one-off lower score, but I do need to be checked again, including a urine test, in a few months.

This health scare, as well as some other worries about my health, did decrease my joy over the month of August. However, I still tried to find moments of joy in the everyday. Like in July, I did sometimes seek joy in material things, for example when I bought a lot of polymer clay supplies a few weeks ago.

However, I also found joy in experiences, such as my and my husband’s trip to Enkhuizen last week and my trip to the town fair yesterday (even though I didn’t buy anything).

Earlier this week, I of course tried to find joy in another material thing by buying an Apple Watch. It’s pure delight seeing how I reach and even exceed my goals. That being said, I did have another health scare today, when the stupid thing told me my cardio fitness level is low. “Low” is the lowest score your Apple Watch will give you. My husband joked: “except for ‘dead’, but that’s not far off.” Great, huh? Thankfully, I do know I can to a degree increase my cardio fitness level by exercising. It is good to feel some sense of control.

Joy in July

Posted on by Astrid

Hi everyone. It’s nearly the end of the month and this means it’s time for me to update you all on my word of the year. As usual, I’m joining the #WOTY linky, as well as Lisa’s One Word linky. My word of the year, as I’ve said before, is “JOY”.

Early in the month, I had a horrible setback, as I got the news that my now former assigned staff would be quitting her job at my care facility. This caused some major sadness and emotional turmoil in me, but after a while, I was able to channel it into something good by creating something for her – a polymer clay hedgehog. I enjoyed the creative process and the smile I brought to her face when I gave her the gift.

Overall, I did find that my joy or lack thereof was more than in the previous months tied to my material success, in the sense that, if I felt I was failing at a crafty endeavor, I didn’t enjoy it either. The same goes for my blog: I was ecstatic when reading all the positive comments to the poem I wrote last week, but didn’t enjoy writing when I had the idea that I wasn’t “successful” in my blogging.

Similarly, my joy is also more tied to material possessions than it used to be. For example, the day my former assigned staff left, I ordered a stuffed dolphin for comfort. While this did help me, maybe at other times I would’ve been able to seek joy without having to spend money. I am not saying spending money on comfort items is necessarily bad, but ultimately, they aren’t material things that will bring me joy.

Joyful experiences included a visit to the trampoline on the last day my now former assigned staff worked my one-on-one shift, eating out with my husband and a visit from my sister and her family. While they involved material things too, in the sense that we spent money on the dinner and my sister gave me some beautiful belated birthday gifts, the experiences themselves were truly great.

In some good news, I did do some Bible reading everyday again this week, while I’d hardly done any over the rest of the month. It is causing me a lot of emotions.

Overall, the month of July was filled with some high peaks but a lot of deep lows too. I must say though that, considering the impact of my staff leaving, I was expecting much worse. I really hope the month of August will be better.