#WeekendCoffeeShare (July 14, 2019)

Yay, it’s Sunday! I am once again joining in with the #WeekendCoffeeShare fun. It’s relatively early for me to write this post, so the most recent drink I had was actually coffee. I usually drink only one cup of coffee at breakfast )or lunch, as it was nearly afternoon), but my husband made me a second cup saying it’s good for the heart. I don’t know whether that’s true, but oh well.

If we were having coffee, I’d share that my husband picked up my new Windows laptop on Monday and installed it on Tuesday. The adaptive tech guy came by on Wednesday to bring me a new Braille display and install the JAWS screen reader on my computer, so that I could actually use it. I have been playing with my computer ever since. I hope the tech company will get me training on the screen reader and Windows 10, but even without training, I like this computer much better than my Mac. Right now, my husband is resetting my Mac, so that my mother-in-law can have it. I think I just closed the tab with instructions on it from my iPhone.

My mother-in-law offered to pay more for the Mac than the Windows laptop had cost, but we refused. I don’t want to get extra money from switching computers.

If we were having coffee, I’d also share that I visited the living facility in Raalte that’s with my current care agency on Wednesday. It was great. There’s tons of sensory equipment in both the house and day center. The staff are also really nice. The house they felt was the most suitable for me, has twelve clients living there. There are two staff during the day and an extra staff during times the clients get showered and such. The manager and care consultant were a bit vague about the waiting list to move in, but I hope to hear more about that soon.

If we were having coffee, I’d share that yesterday, my husband had the yearly driver’s day at his work. He is a truck driver for a large transporting company and the driver’s day is sort-of-mandatory. I spent the day at my in-laws. Well, my father-in-law had just left for vacation, so I was alone with my mother-in-law. We went for a walk with her dog. Wow, it was hot and humid! My husband came to my in-laws’ house after a few hours when he’d had enough of the event at work. My mother-in-law cooked us dinner, although she was interrupted to pick up a kitten from the animal shelter. She volunteers to bottle-feed kittns that are too young to be kept at the shelter. The kitten was lovely!

How was your week?

Thankful Thursday (May 30, 2019): My Mother-In-Law

It’s Thursday and I haven’t blogged in a few days. I’m feeling the pull of depression worsen and that’s not helped by the fact that I still am not done with the long-term care application process. My husband, in-laws and support staff try to remain positive, but I’m having a really hard time of it. I haven’t updated my list of alters on this blog in a while and several have recently emerged. Some seem like they’ve been around longer, but a recent disappointment in the care application process caused us to split again too. I don’t know whether that’s even possible or it’s a sign of us being a fake dissociator, but oh well.

Thursday means it’s time for Brian’s weekly Thankful Thursday blog hop. I only participated once before and that was when I’d just seemed to lose hope that my situation would ever improve. Because the long-term care laws would be changed in 2021 to allow the mentally ill access, I said that by then everything would fall into place. It looks more like that than ever now. Only thing is, I’m pretty sure I can’t hold on that long. But I digress. This post is supposed to be positive.

Today I am most thankful for my in-laws. When I got the latest disappointing news on Tuesday, my mother-in-law offered to pick me up from day activities. This was unrelated, but it couldn’t have been more coincidental. I spent the evening with her, my father-in-law and my mother-in-law’s niece, who temporarily lives with my in-laws. I spent yesterday evening there too, meaning I had to spend a manageable amount of time alone.

Today is a bank holiday and tomorrow, my day activities is closed too. Since my husband does have to work, I would’ve had to spend the day alone at home if not for my mother-in-law. She offered to come by in the morning for a cup of coffee and in the afternoon too for either tea or to take me to my in-laws’ house if my husband would be home from work late.

I am also thankful for my support coordinator and support worker. Next Monday, my day activities will be a bit short-staffed so I can’t go for the weekly Monday-morning walk, as there’s no-one to guide me. However, my support coordinator offered to come by in the afternoon to take me on a walk. She’s also been incredibly supportive of me during the latest developments. My husband said she deserves half a truck filled with Merci chocolates for all the work she does for me. And I agree. My mother-in-law deserves the other half of the truck.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Dealing with Some High School Memories

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Was I Sometimes Raised as a Golden Child?

I have been feeling really off lately. I keep having flashbacks. I also keep having what I’d describe as flashforwards, where I imagine my parents’ reaction to the different possible outcomes of the long-term care situation. These then lead to more flashbacks. One particular flashback I keep having is to a phone conversation I had with my mother when I’d just been admitted to the mental hospital in 2007, or maybe it was shortly before then. She yelled at me “You can’t even wipe your butt without your support worker there”. While this was and still is exaggerated, I do have issues with my personal hygiene, including sometimes with toileting.

I have noticed that there’s a lot of shame attached to my needs. Like, there is this constant nagging voice in my mind saying that I really do manipulate everyone into giving me more care. After all, am I not getting by? This part of me is telling me to erase everyone from my life and just go live on my own, since even if I lived with my husband and no support, there was still my husband to be manipulated.

I was discussing all this with my nurse practitioner last Thursday. He said even if I do manipulate people (and I no doubt do, as does everyone else), these people also let themselves be manipulated. Like, if they have an attitude like they’d rather help me with every little thing than endure my frustration, it’s no wonder I become dependent.

There was this show on Dutch television last Sunday about a second grade class. I didn’t see it, but a term used in it that was repeated often throughout the week, was “curling mother”. I have no idea whether that’s the correct English term, but it refers to a parent who helps their child with everything until they’re eighteen and then magically expects them to have learned independence and leave the nest. My nurse practitioner was reminded of this when I described my parents. It feels odd, because even though yes my parents did help me with every little thing, this expectation that I move out at eighteen was made very explicit from an early age on. It wasn’t like my parents were hoovering over me not realizing that they’d not be there for me forever. In fact, I’m pretty sure they couldn’t wait for me to move out. It just ugh, feels so off. Like I was spoiled somehow because my parents did everything for me.

At this point, I remember a discussion in an inner child healing group in which the original poster commented on some author or speaker saying that the golden child of narcissistic parents suffers a lot. This person was confused, because the golden child is the child favorited by the narcissistic parent, the child who doesn’t get abused (or so it seems). Some people said that the golden child suffers a lot because, well, they are only the narcissist’s favorite as long as they live up to their perfect standards.

I was raised in a household where the golden child/scapegoat roles reversed repeatedly. For those not aware, the scapegoat is the main target of obvious abuse in a narcissistic family. As such, I can relate to a lot of golden child attributes. Like, I was often praised excessively, bragged about and let off the hook. Then again, I was, and this was always very clear, expected to livve up to my parents’ perfect-image plan for me. Once I stopped doing this, I was placed in a clearer scapegoat role.

It still feels off to think of myself as having been spoiled. I know Pete Walker says spoiling is a severe kind of trauma too. However, in society, it is often treated like the spoiled child is to blame for being spoiled. And they definitely aren’t. Only as adults can they choose to undo the effects of this trauma, but they have to admit it first. I have to accept this.

Gratitude List (February 2, 2019) #TToT

I didn’t write much this past week. Not because I didn’t have anything to share, but because somehow the words wouldn’t make it onto the page. I had an extremely eventful week, which I will share more about later and which I already shared a bit about last Wednesday. Today, I’m going to write a gratitude list for the past week. As always, I’m linking up with #TToT.

1. My shoulder pain being almost over. Like I said two weeks ago, I suffered a small collarbone fracture. Yesterday was the last day of my strong painkillers. I had wanted to quit them earlier, but my husband said not to be too hard on myself. Today though, I only took two paracetamol and am more or less fine. Granted, I didn’t do a lot of repetitive work, so after I’ve finished this post, it’ll probably hurt more.

2. Being able to exercise again. I went on the elliptical for a total of 35 minutes yesterday. I did take breaks, but I felt my legs more than the injured arm.

3. Sensory activities. I already shared last Wednesday about the living facility I might go into that has lots of sensory supplies. Seeing this inspired me to explore the sensory equipment at day activities more. I found a large cylinder which you can roll on. I also spent time in the small (almost too small for my overweight body, but not yet) indoors cocoon swing.

4. Buying my Macbook. I haven’t unboxed it yet, but I’m glad I finally put one foot in front of the other and bought it.

5. Stuffed animals. Today, I experienced severe overload and had a meltdown while at my in-laws. My mother-in-law brought me a huge collection of Disney soft toys and other stuffed animals. I loved them.

6. Sleep. I didn’t sleep well early in the week. Thankfully, towards the end of the week, I slept better.

7. Getting some delicious treats for myself on Thursday. Some were healthy too, like blueberries. Some were not (liquorice!) but I loved them nonetheless.

8. The day activities staff treating us to some special food on Friday. She decided to spoil us, so for lunch on Friday, we had croissants and some salty crackers with cream cheese and olives. I went to the marketplace to buy them with this staff.

9. My husband. I need to be extra grateful for him because this past week has been stressful.

10. My support coordinator, whom I saw four times this week.

What have you been grateful for this past week?

Gratitude List (January 4, 2019) #TToT

Yay, it’s time for my gratitude list with #TToT once again. I am also linking up with the Word of the Day Challenge, for which the prompt is “gratitude” today. Do you want to know what I’ve been grateful for lately? I love to share!

1. Two wonderful full days at day activities between Christmas and New Year’s. There were only about five clients there each day and two staff. On Thursday, I went for a walk with one of the staff. We also ate pancakes for lunch. On Friday, the staff drove the center’s van to a restaurant in a nearby village, where we had a drink. I had hot chocolate with whipped cream. One of the clients from my group, an older man who used to drink beers with his friends regularly before he declined from a brain injury, had an alcohol-free beer. I could tell he thoroughly enjoyed the experience. So did I.

2. Resting over the week-end. I was pretty tired from all the Christmassy stuff by last week Saturday. So was my husband, so we chose to have a lie-in. I normally feel bad about getting up at like noon and my husband doesn’t like it either, but neither of us minded.

3. Oil balls or whatever the English term is. These are fried balls made of the same stuff that pancakes are made of. They’re a traditional New Year’s snack here. I was nauseated from them for days, but who cares?

4. Not having gained any weight over the holiday season. That is, I may’ve lost then gained some or vice versa, but in any case I was at the exact same weight last Monday that I’d been in early November. I already mentioned this last Monday, but I’m still so grateful for it.

5. A long walk with my mother-in-law. On Wednesday, she visited me and we went for a walk into the next village. This was about a 5km walk that took us 70 minutes.

6. Horseback riding with my support worker. Yesterday, for the first time in a while, my support worker was available to assist me as I rode the horse. It was truly a lovely trip. While waiting on the taxi back home, a young man from my day activities came into the canteen. Once she’d made out that we knew each other, his staff prompted him: “Who’s that?” I was delighted to hear him say “Astrid!” I only see this man on one of my days at day activities and I hadn’t expected him to recognize me, so it was truly lovely that he did.

7. Fried chicken. Yesterday, my husband cooked a rather boring meal of macaroni with bell peppers and leek. He surprised me at the end by saying that, if I admitted this was the most delicious meal I’d ever had, he might have some chicken for me. So funny! We had wings and filet. I liked the filet better, so my husband gave that to me.

8. Getting a head massage. We havve a head massager at day activities. I love it and today, my staff were doing beauty stuff. I asked for the head massage first, but I also had my nails done.

9. Looking at an online store for sensory supplies with my staff. I already knew the store and have my sensory cat from there, but my staff hadn’t heard of it. They probably got the sensory room modeled by Barry Emons, the inventor of snoezelen, but his shop is harder to use and the itmes are more expensive than the store I found. I was totally excited ooohing and aaahing at all the lovely supplies and all the more excited because my staff was excited too. We might get some stuff for my day activities group.

10. Dancing. On Friday afternoon, one of the staff at another day activities group organizes a “prom” for the entire center. I only went once before, but today, I decided to go again. I loved it.

11. Eating French fries for the first time in a while. Today, my husband heard a doctor on the radio say that you need to go to the snack conrer once in a while or you’ll get fat, or so he said. The real talk was probably about crash diets not working, but I loved my husband twisting it to an excuse to get us fries. We also each had a burger with it.

12. The lovely blog interaction I’ve been involved with this past week. I’ve gotten more interested in reading and responding to other blogs and it probably pays off on my own blog too. Besides, I just love reading other blogs, as it inspires me too.

What have you been grateful for this past week?

Small Accomplishments For Today

Yesterday, Girl with the Paw Print Tattoo wrote an interesting post of little accomplishments. She used these to focus on the positive rather than the negative. Like she said, it’s easy to focus on what we could’ve done better, but it’s more helpful to focus on what we did achieve. Today, on the last day of 2018, I am sharing a list of my accomplishments for the day.

1. Got out of bed before noon. My husband got up by 8AM, but it was good enough for me to be up by 11:30.

2. Got showered and dressed. Most people don’t understand that this costs me a lot of energy. I don’t understand it myself sometimes, as I’ve been doing it by myself for so many years it seems obvious. However, it still takes more effort than it would most other people, I think.

3. Ate relatively healthily and not too much. Of course with it being the last day of the year, we had snacks and we had croissants for breakfast too. However, I didn’t eat more than I should have.

4. Went on the elliptical for nearly 30 minutes. This isn’t even a small accomplishment, as it is quite big a deal. Last week, my husband criticized me for having stopped exercising regularly and eating too much. It’s been only a week, but I can already say I’m doing a little better.

5. Was able to sit in the living room with my husband and sister-in-law for two hours without needing to go upstairs to unwind. MY sister-in-law came by for an early new year’s celebration (she left at 9PM). Last year, I was so involved with my special interest du jour that I hardly paid attention to her. This year, I was even able to enjoy it.

6. Didn’t have a meltdown, despite the fireworks and all the things that are unusual on this day.

7. Writing this blog post. I originally didn’t intend on writing today, but then I saw the aforementioned post and I just had to copy the idea.

What “small” things did you achieve today?

2018: The Year in Review

The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. HOwever, I want to do this review for myself if for no-one else. Here goes.

The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.

I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I inteded 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.

In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.

I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the partsin me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.

With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.

In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.

Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particulalry when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?

My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.

Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.

Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.

I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.

With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.

Lucy At Home UK parenting blogger

#WeekendCoffeeShare (December 29, 2018)

Oh my, it’s Saturday again! This means it’s been nearly a week since I last wrote a blog post. I really wanted to write more, but I’ve been feeling badly uninspired. Today, a few ideas are floating through my mind, including several blog challenges. However, I’m finding that I struggle to put much effort into a blog post. For this reason, I’m settling on a #WeekendCoffeeShare post.

If we were having coffee, I’d ask you how your holidays have been. Mine have been good but exhausting. I went to my parents for Christmas Eve and stayed there overnight. It was okay. We managed to avoid discussing my life, which is a good thing, since my parents are very disappointed in how I live my life. Like, my mother can feign a bit of interest in my activities at the day center for severely intellectually disabled people I attend. My father can’t even pretend to be interested. I’m fine with it, sort of. At least by avoiding talking about me, we don’t risk ending up in a fight. It was a much more relaxed visit than the ones at which I’ve tried to talk about my life.

If we were having coffee, I’d share about the gourmet dinner we had on boxing day at my in-laws. It was fun and tasty, but I did end up with a lot of IBS symptoms for a few days following it.

I’d also share about my plans for buying a Macbook. I did share this with my parents and sister on Christmas Eve. I’d not even told my husband before, because Macbooks are rather expensive and I was afraid he wouldn’t approve. Not that he has to. Buying a Macbook would mean I could use its built-in screen reader and no longer depend on JAWS, the main screen reader for Windows, which costs like 1000 euros and hasn’t been improved much sinnce it was first released. In theory, I could get JAWS paid for by health insurance as a needed adaptation, but I’ve been waiting for my insurer’s approval for nearly a year. My husband was in fact pretty supportive. We found an older Macbook Air model for a reasonable price. I can’t wait to go to the store to take a look at it.

I don’t have any plans for the week-end. Besides resting, that is. I’ll probably just chill out with some TV shows or books. My husband’s oldest sister is going to visit us for new year’s eve. That should be fun.