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.

#WeekendCoffeeShare (December 2, 2018)

I wanted to write a post yesterday, but I spent the entire day at my in-laws, so I didn’t have the time to write. Today, I’m joining in with #WeekendCoffeeShare again. I didn’t have coffee today, but green tea counts too. Otherwise, I did have coffee yesterday.

If we were having coffee, I’d ask how you’ve been. I’ve missed the Weekend Coffee Share linkup, not having participated in months, and I haven’t checked out the participants’ blogs much either. I really hope to read more blogs soon.

If we were having coffee, I’d share about my week at day activities. As regular readers of my blog know, I spent three full days at day activities this past week. It was lovely. I particularly enjoyed music. I’ve also been able to relax more in the sensory room there and not see staying in it as punishment. The sensory room is supposed to be for relaxation, but at my old day activities, I was often sent there for having a meltdown.

I’d also share about the week-end. As I said, we spent yesterday at my in-laws. Thankfully, my mother-in-law and I were able to walk the dog while it wasn’t raining for a change. Of course, with the drought of the past few months, nature needs rain, but that doesn’t mean I like it.

Today, I spent the morning in bed. In the afternoon, I mostly read a book. I’ve been enjoying reading young adult fiction lately, but don’t let myself take the time to read much. Today I did. I also went on the elliptical for 25 minutes. Unfortunately, my Fitbit activity tracker didn’t record it as exercise.

This week has been a pretty good one. I hope it’s been the same for you.

As a side note, i just realized it’s December already! Wow, how time flies! I was planning on checking out advent calendars, only to realize the first day of Advent already passed yesterday. Can you believe it’s almost 2019? I can’t!

Gratitude List (November 30, 2018) #TToT

It’s Friday again! I am not a big fan of the week-end, but I like Fridays nonetheless. I don’t relly know why. Maybe it’s just that they’re blue in my mind’s eye’s synesthetic perception and blue is my favorite color. Who knows?

Friday also means it’s time to link up with #TToT again. Here are the things I’ve been thankful for this past week.

1. Tarot apps. I don’t really believe in the spiritual basis of tarot, but I wanted to learn it anyway to use as a thought-starter. I read up about it on some blogs, but didn’t know how to make it work for myself, as I, being blind, cannot use real tarot cards. After looking for a while though, I found some accessible-with-VoiceOver tarot apps. Of course, I still miss out on the visual aspects, but I can still reflect on the card meanings.

2. Gratitude journaling. Okay, yeah, I am doing this now, but I also have been doing it in an iPhone app this past week. I couldn’t manage to do it daily, but I managed two tims since installing the app on Monday. It does help me.

3. Yet another extra afternoon at day activities. This was just once though. Because my support coordinator was off sick and my support worker or mother-in-law couldn’t come either, the staff got the manager’s permission to let me stay at day activities on Wednesday afternoon. It was really nice.

4. Horseback riding with my mother-in-law. My support worker couldn’t come on Thursday to go riding with me, but my mother-in-law could. It was a lot of fun.

5. Dinner with my in-laws. Alos yesterday, I decided on a whim to go have dinner with my in-laws. I was scared my husband would be mad with me for it, but thankfully he wasn’t. We ate delicious macaroni.

6. My fabulous husband. Need I say more? I just love him.

7. Good food. My husband has been experimenting with healthier food choices. On Tuesday, he made zucchini noodles. When on Wednesday he made rutabaga (Swedish turnip) fries, I was a little suspicious. However, I liked it.

8. A lie-in on Thursday. I didn’t have anything to do except for horseback riding at 4:30, so I slept in till 11AM. I also listened to some relaxing music in bed.

9. Relaxing in the snoezelen (sensory) room. On Tuesday, I took my phone into the sensory room with me and listened to whale sounds and music while lying on the water bed. I also took time to relax in the sensory room on Wednesday morning.

10. Chatting to a former nurse. Yesterday, a former nurse from the acute psychiatric ward I spent sixteen long months on in 2007-2009, sent me a text message. It wasn’t intended for me, so I told him who I was and that he probably had texted the wrong Astrid. He started chatting to me anyway. I don’t have a lot of memories of that time, but I did remember him.

What have you been thankful for this past week?

Full Day at Day Activities

Hi, I’m Marieke. I am the insider who is most often out at day activities. I enjoy sensory activities, movement activities and just relaxing in the weighted chair or snoezelen (sensory) room. I am also very good at relating to my fellow clients. I know that I am (or should be) intellectually more capable, but I don’t feel that way. I guess it’s something to do with social and emotional development, or whatever.

Yesterday, we went to day activities for the whole day. We’ve been going for the whole day on Tuesday for about a month now and we love it. We had fun yesterday too, going for a short walk in the afternoon. There’s a farm with lots of cute animals next to the day center. We walked near the animals. I couldn’t touch them, but the other client who was with me and the staff could see them. He said lots of funny things about the animals. Like, when we passed an alpaca that had its behind turned towards us, he said “butt” and laughed.

Today, our support coordinator would have visited us in the afternoon after we’d spend the morning at day activities. However, she was off sick so couldn’t come. Our support worker also couldn’t fill in for her and our mother-in-law couldn’t come either. As a result, we would actually have nothing to do and no-one to rely on for the afternoon. Our day activities staff were a little concerned about us, so they asked the manager whether we could spend today’s afternoon there too. We get funding for six half-days and we already go on Tuesday and Friday for the whole day and Monday and Wednesday morning. The manager was willing to treat this like an exceptional situation though. So we could attend for the full day today too.

It was so much fun. In the morning, we did a cooking activity. I went shopping for it with the staff. Usually, I participate in the cooking itself too, but we felt this would be too overwhelming. Instead, I went into the snoezelen room. The staff made a stir-fried egg roll with mushrooms, onions and bell peppers.

In the afternoon, we had music. A music therapist came to our group. She sang and played the guitar. We could also play on the guitar for a bit. We sang St. Nicholas songs. I am glad I was out, as some of the others would’ve found this too childish and just been annoyed at the noise. I really loved it though.

Tomorrow, I’ll have the day off, but I will go horseback riding in the afternoon. That should be fun!