Monthly Archives: December 2018

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.

Recovery

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.

Gratitude List (December 21, 2018)

It’s Friday again, yay! Last week I skipped my gratitude list post. Not because I didn’t have much to be thankful for, but because I wanted to write some other things and was feeling sick with a cold. Today, I’m taking my chance to do the post. I have a lot to be thankful for this past week. Here goes.

1. The wonderful Christmas box I got last week. I already wrote about it last week, but I want to mention it here too. I particularly love Snowflake, the stuffed unicorn. I also loved the fleece blanket I got in my package. I sat covered in it on Saturday when my cold was at its worst.

2. My cold being almost over. I am still a little sniffy, but with how bad my cold felt last Saturday, I”m truly grateful it’s much better.

3. My staff being well again. My support coordinator was off sick for a few weeks, but late last week, she returned to work. She first visited me on Wednesday. My nurse practitioner, who was off sick even longer, returned to work this week too. I had a good appoitnment with him.

4. A Christmas meal at day activities. On Tuesday, we had a delicious lunch. It was a little chaotic, but good too.

5. Horseback riding again. It was rainy yesterday, but thankfully we could still go on an outdoors ride.

6. Eating delicious tuna macaroni with my mother-in-law. She went horseback riding with me and after that, I ate at her house. It was just the two of us, so I could decide what we had.

7. The application for long-term care being mailed. It was sent out yesterday. It was a little hard reading the application, because my staff had to fill out how impaired I am in various areas on a 0-3 rating scale. I got quite a few 3s.

8. My husband being supportive. He showed his support of me even when I disclosed some rather embarrassing aspects of the long-term care application (ie. The fact that I am quite impaired in my personal care). He knows to some extent, of course, but still it’s a little awkward to admit.

9. All the Christmas decorations at day activities and some at home too. I didn’t use to like those. In fact, the first Christmas of my psychiatric institutionalization, I even pulled them all off the wall on my ward. Now I like a little Christmassy cheer.

10. The weighted blanket a staff made for my day activities group. She gave it to us a few weeks ago and I may’ve mentiooned it before, but then I mention it one more time. I love being in the sensory room and lying under it.

11. Painkillers. I had bad shoulder pain last Tuesday and still it’s not completely gone. I also had a headache today. However, ibuprofen and paracetamol worked well respectively.

12. Christmas songs. I can’t get some out of my head, but it’s lovely. This year is the first year I can appreciate Christmas.

This list was a bit random in its order, but I can’t seem to reorder the items on my phone and am too lazy to open my computer. I hope you enjoyed reading it anyway. I looked forward to linking up with #TToT, but saw it had come to a close for 2018 last week. The linky also is no longer open, but I hope some of those who visit me from #TToT regularly, will leave me a comment anyway.

Panicked Ramble

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

Ten of The Most Memorable Gifts I Ever Received

Originally, I wanted to post about the lovely box filled with snacks and gifts I received for Christmas at day activities earlier this week. It’s a tradition here that employers give their employees such a box for Christmas. Of course, day activities isn’t a real job, but we get a Christmas box anyway. Ours was even more special, since it had been partly personalized for each of us by our staff. Maybe I could devote a post to this box, but then I remembered that Finish the Sentence Friday is about gifts too. I am twisting the prompt a little and not just writing about the gifts I received as a child or for Christmas specifically. After all, like I may’ve said before, Christmas isn’t as important a gift-giving celebration as St. Nicholas on December 5. Besides, I don’t always remember which gifts I got for St. Nick and which for my birthday. For this reason, I’m creating a list of the most memorable gifts I received throughout my life.

1. Wally, the stuffed whale. I got her when I came home from the NICU at three months of age. I slept with her till I was nineteen. Yes, I slept with stuffed animals that long! In fact, I still do. Now I don’t sleep with Wally anymore, but I still own her.

2. Roza, my favorite doll. No, Rosa isn’t spelled with a z in Dutch, but I had no idea. I got her from my paternal grandma for my third birthday. She had bought her in Berlin and we joked about the German word for “doll”, which is similar to the Dutch word for “poop”. Roza remained my favorite doll throughout childhood. When I was seven, I was interviewed for a Dutch magazine for blind children and said that my memory from three years back was tha tit was the year after getting my favorite doll.

3. A Barbie doll I got for my eleventh birthday. The reason this one is so memorable is the fact that my mother regretted giving it to me. She felt it wasn’t “age-appropriate” and I might need to go residential at the school for the blind if I didn’t catch up with my age peers socially and emotionally. I need a separate post to explain the (lack of) logic behind this reasoning.

4. Deodorant. I got this for my fourteenth birthday from my sister. No, not in a package that had other toiletries in it. Just a deodorant stick. She clearly wanted to send me a message. I didn’t get it.

5. A coffee maker. I got it for St. Nicholas when I was 20. I was going to live independently the next year and needed a coffee maker then. My husband is happy he didn’t drink coffee when I still had the apartment I used that coffee maker in, as it quickly got very moldy and dirty from lack of cleaning, as did the rest of the apartment.

6. A Planxty CD. This was the gift my husband gave me for the first birthday after we’d started dating in 2008. I only played it when my husband was there, as I really didn’t like it. Then again, he didn’t like my first gift for him, which was a book of previously unpublished philosophical works.

7. A liquorice “cake”. My husband and I got it for our wedding from my staff at the psychiatric resocialization ward in 2011.

8. The sensory cat soft toy I got for my birthday last year. It can be put in the microwave and then gives off heat and a lovely lavender scent.

9. Rainbow/Sofie, the stuffed unicorn I got from my previous day activities when I left there. She’s truly so cool! She has two names, because two readers of my blog each came up with an equally good one.

10. A weighted unicorn soft toy. Finally, I have to include something from this year’s Christmas box. It is, interestingly, another stuffed unicorn. This one is weighted as to provide sensory benefits. I’m having another contest to name her, like I did with Rainbow/Sofie.

What gifts will you always remember having received?

A Very Validating Experience

As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.

A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.

Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.

Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.

This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.

Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.

Share Your Merry World (December 10, 2018)

I am still in the mood to write, but am still a little uninspired. I love the
Share Your World
challenge though. This week, Melanie has really interesting questions for it.

What’s the worst topping you could put on popcorn? (credit to Teresa for this one)
Mustard, LOL. Melanie answered hot sauce, but I wouldn’t mind that as much. I’m still not fully recovered from my husband’s kale macaroni, on which I chose mustard as a condiment. Such a mistake!

In what country did Silent Night originate?
I have no idea and am too lazy to look it up.

How would you react if there was irrefutable proof that God doesn’t exist? How about if there was irrefutable proof that God does exist?
I wouldn’t change much either way. I am not sure what I believe regarding the existence of a living, actually-involved-in-our-lives God, although I think the idea is comforting. However, the fact that I do not subscribe to any organized religion and do not feel that morality is based on God, means I would probably still live my life here on Earth as I do now whether God exists or not.

And last question:
What is the scariest non banned item you could take on to a plane?
Uhm, my white cane? I have no idea really.

Which version of the holiday celebration do you and your family enjoy? By this I mean do you follow Jewish traditions with Hanukkah; Christian celebrations with Christmas and (for those over the pond) Boxing Day; or some other festivities that I’ve overlooked? Please do share with everyone!
We celebrate Christmas, although I don’t care about any of the traditions that much. It’s just one of two good opportunities to see my parents and sister. My birthday in June is the other.

Queen of Questions (December 9, 2018)

I have a ton of blog post ideas floating around in my mind, but I cannot get ahold of one. Teresa’s questions for today are very inspiring too, so I’m just going with those.

1. What was your favorite subject in school?
Math for most of elementary school and the first year of secondary school too. Then it became too difficult.

2. Sleigh ride, snowmobile, or something else?
Sleigh ride. I loved riding our little play sleigh back when I was a child. I’d love to someday ride a real big sleigh.

3. If you were a disney character, which one would you be?
I don’t know that many Disney movies, but the one that comes to mind now is Eeyore from Winnie the Pooh. Not that I ever saw the movie, but my father used to read us the fabulous book.

4. What is the meaning of life?
I’m still learning. Maybe that’s the meaning of life.

5. What is the strangest thing you have ever eaten?
I don’t really eat any strange foods, because I’m a rather picky eater. My husband’s kale macaroni with mustard comes to mind though. The choice to add mustard was mine and it was a bad choice.

6. Puppy, kitten, piglet, or baby goat?
Baby goat. I saw them at the petting farm a few times growing up. I love kittens and puppies too though. My husband raised a cat from kittenhood on before I lived with him. The cat, now five-years-old, no longer lives with us.

7. If you were auditioning for an Idol show, what would you sing (imagine you can sing if you can’t)?
I’m a Survivor by Reba McEntire, of course.

8. What is your favorite cartoon?
I don’t watch cartoons. I like Sesame Street though if that counts.

9. Randy Rainbow – what is your favorite song?
Until I read another blogger’s answers to these questions, I’d never heard of Randy Rainbow. I’m too lazy to look him up though, so I’m going to pass this one.