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.

A Letter to the Insiders

I want to write, but I don’t know where this is going. In fact, until I wrote down the title of this blog post just minutes ago, I had no idea I was even going to write a letter to my alters. I was inspired to do it by the recovery-based letters some people write to their mental health conditions.

Another thing that inspired me subconsciously, was a conversation with a dear friend on the need to integrate as part of treatment for dissociative identity disorder. This is often seen as the only possible end goal, and this dear friend was even told so on her first appointment with a therapist. We feel very strongly about this. First of all, integration is the third and last phase of treatment for DID, so it feels very wrong to discuss it at the very start. Second, integration can also mean living a functional life (ie. integration into society). I know many therapists, including I think our psychiatrists, feel a merger of all alters as somehow more healthy than living as a functional multiple. Well, agree to disagree.

The first phase of treatment is stabilization. This includes getting to know your system, learning to deal with feelings, developing inner communication, etc. After this, the second phase is trauma processing. Only once all traumas have been processed can you begin to integrate.

We don’t do DID treatment and aren’t likely to get it ever at all. After all, the diagnosis process scares the crap out of us and we’re unlikely to be believed. As such, it’s all the more important that we validate ourselves.

Dear you,

Welcome. We appreciate you. We are glad that you’re here, for you helped us survive. Without you, we wouldn’t be where we’re now. Thanks for that!

We know you may feel sad, or angry, or confused. that’s all okay. It may not feel okay to you, but that too is okay. Your feelings are valid. They’re there for a reason.

We want you to know there are people out there to support you. Inside, you have an entire system of alters that will help you be the best you you can be. If we work together – and that includes you -, we’ll heal.

Outside of the body, you’ll meet our support staff. Maybe you’ll be able to meet our mental health team too. Most of the people in our current life are supportive. We know this hasn’t always been the case and that’s one reason you’re here. We are here to help you heal from those experiences. You can trust us.

You may not be able to disclose your true identity as an alter to everyone, but there are people in the DID community you can talk to as yourself.

We hope this letter helped you feel a little bit safe. It’s still scary, but things will get better.

Love,

Us

Gratitude List (December 7, 2018) #TToT

Hi and welcome to my gratitude list for this week. As always, I am linking up with #TToT. Here are the things I’ve been grateful for lately.

1. My writing spirit returning. In November, I only managed twelve blog posts. That’s really not as much as I’d like. I cannot say for sure that I’ll keep in the writing mood, but I certainly am today.

2. Getting to know new bloggers. I’ve been checking out a ton of bloggers and writers lately and am loving it.

3. St. Nicholas. We celebrated it at day activities on Wednesday. It was a little chaotic, but still lots of fun.

4. Festive candy. I love all the St. Nicholas and Christmas-related candy. So sad they don’t have it in the stores all year, although that’d probably be bad for my body.

5. My supportive staff. My support coordinator is still off sick, but my support worker and day activities staff have been incredibly accommodating. This week, my support worker offered to come on Thursday early in the afternoon even though that wasn’t supposed to be a support time for me at all. On Monday, I will be allowed to stay at day activities for the full day again, because my support coordinator was supposed to see me then.

6. Swimming. According to my Fitbit, I managed 53 laps this week. I can’t believe it, but oh well.

7. The stationary bike at day activities. Our staff are trying it out to see if they want to buy it for the day center. I hope they will. I went on it threee times this week. Unfortunately, my Fitbit doesn’t track my going onto it.

I can probably think of more things, but it’s time to go off to bed now. I hope you all had a great week.

Queen of Questions (December 7, 2018)

A few days ago, I discovered The Haunted Wordsmith’s Queen of Questions. In it, the author posts a set of questions each day for other bloggers to answer. I badly wanted to answer the questions that day, but didn’t get to do so back then. Now I’m participating for the first time.

1. You have to take the setting from one book, plot from another, and characters from a third to create a new book: What did you take?
I am not that much of a fiction reader, so I really have no idea how to go about this one.

2. What is your favorite candle scent?
Oh, I love love love scented candles! Or rather, wax melts, as candles are a bit risky for me to use. I have a lot of favorites. Now that I think of it, I think my all-time favorite is the Cappuccino Truffle one from Yankee Candle, although Mango Peach Salsa is also great.

3. What is your favorite thing to eat for breakfast?
Yoghurt with crunchy muesli and some fruit in it, especially blueberries. I must say though that I eat this combination mostly for dessert when at my in-laws. For breakfast, I usually eat it without the blueberries.

4. Did you play video games in the arcade? If yes, what was your favorite (pinball counts too)?
No. I have no clue what the arcade even is. I am blind, and back when I was interested in computer games, all the accessible ones were boring.

5. Pool, darts, beer pong, or something else?
Showdown. Not that I like it, but it’s the only remotely similar game played by blind people.

6. What was the last thing you saw that made you do a double take?
I don’t really know..

7. How do you like your peanuts?
Salted but otherwise not coated. I hate the plain ones that you still have to pop out of the shell, because I’m way too lazy to do that.

8. What is your favorite lunch meat?
I don’t particularly like any kind of lunch meat, but if I have to choose, i’d go for salami.

9. Do you believe in magic?
Not really. Sometimes I try to, but it’s more of an entertainment thing than true belief.

10. What song best describes your mood right now?
Dancing Queen by ABBA. Not that I’m dancing, but I feel like it.

Psychiatrist’s Appointment Next Week

Next week, we’ll meet with our psychiatrist to discuss how to proceed in our mental health care. Whether we want to continue at all, and if so, how. We’re very nervous and still haven’t made a definite decision yet.

Our nurse practitioner is still off sick. Until a few days ago, I thought that we didn’t need any mental health care, so we were more or less okay with him having been off for over a month already. I felt that getting assessed for trauma-related conditions, as our psychiatrist had originally wanted, was just stressing us for no reason. Most likely, we wouldn’t be believed so just end up where we’re now, with a BPD diagnosis and required to do DBT. I guess we’d rather keep the status quo than be told we definitely don’t have trauma-related issues.

Then we thought, so what if we keep on merely surviving like we do now? If we don’t get therapy, will our mental health ever get any better? Besides, our psychiatrist had been talking discharge, even though she called it a break. So what if we end up in crisis?

Some of us were also feeling like our psychiatrist wants to get rid of us. Like we’re a pain in her neck. Lots of pain has been coming up and today, we nearly landed in crisis because of it. We called the mental health team, even though we’ve been feeling like we shouldn’t need them. Our former assigned nurse called us back. Thankfully, we had a good talk with her.

She said that not doing DBT or trauma therapy doesn’t mean we’d be discharged altogether. We could also just have an occasional supportive check-in with a nurse. That’s not what our psychiatrist said, but oh well. It also doesn’t mean we’ll never get therapy again, or something. Maybe we could take a break for half a year and see whether we want the assessment an dpossibly therapy then.

A lot of us are feeling all sorts of things. We feel attachment pain, which scares the crap out of some of us and makes some of us feel shameful. After all, our overreliance on mental health was the exact reason we got kicked out of the mental institution last year.

It doesn’t help that our support coordinator has also been off sick for over a week. I hope it’s just the flu. She’s supposed to go to the appt with us next week, but if she’s still sick, of course she won’t come. We did discuss our concerns with our staff at day activities yesterday and they offered to write our questions down for us.

As a side note, we had a very validating experience at day activities. When discussing our issues with mental health care, we mentioned DID (calling it multiple personality). Our staff said she’d seen us switch to a little girl. Wow. I didn’t know anyone could tell unless we use our own names.