Gratitude List (December 21, 2018)

Posted on by Astrid

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

Posted on by Astrid

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.

A Very Validating Experience

Posted on by Astrid

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.

Gratitude List (December 7, 2018) #TToT

Posted on by Astrid

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.

#WeekendCoffeeShare (December 2, 2018)

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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!

Gratitude List (November 23, 2018) #TToT

Posted on by Astrid

It’s been forever since I last shared a gratitude list. Since yesterday was Thanksgiving in the United States, I felt it’d be about time again that I post one. Here goes. As usual, I’m linking up with #TToT.

1. An extra afternoon at day activities. In fact, I started writingg this post while there. As of last week, I go to day activities each Tuesday and Friday for the whole day (and Monday and Wednesday mornings). I am loving it.

2. Horseback riding. I had to shift my riding lessons to another day to be able to go to day activities for the whole day on Friday. The only day off I now still have is Thursday. The riding instructor didn’t have a volunteer then to help me, but my support worker offered to help me. Yesterday was the first time I went riding on a Thursday. It was great!

3. A long walk with my support coordinator. Normally, we walk to the ferry at the end of my road and back. This is about 2.5km total. On Wednesday, I asked her to walk in the other direction. We walked all the way to the next village and back. This totals over 3km.

4. Chinese takeaway. On Sunday, my father-in-law came to our house to watch soccer and other men’s programs (that I secretly do like) with my husband. Usually, he “cooks” for us on these days and this time, it was Chinese. I loved it. I did suffer bowel cramps and bloating for several days after it, but who cares?

5. French fries for lunch. To continue on the food track, we had French fries for lunch at day activities on Wednesday. The reason was they still had some money that needed to be spent by the end of the year. The staff were initially worried that we wouldn’t have a full meal, but we definitely did! It was so tasty! I was a little scared that my husband would be angry because of my weight gain, but he wasn’t.

6. My new stuffed bear. I already got it two weeks ago, but am still so grateful for it. My mother-in-law won it at an event she went to for the animal shelter she works for. I’m calling it Little Bear, because my husband has a big bear too. That one is a little damaged and the littles not-so-secretly want another one, so that we have both little and big bear for ourselves.

7. Swimming. I went swimming with day activities again on Tuesday. This time, I swam a record 52 pool lengths.

8. Getting my hair done. On Friday, the support coordinator at my day activities group braided my hair. I didn’t even know I had long enough hair for that, but apparently I do. On Tuesday, a staff at another group made an even more beautiful braid.

9. New books to read. Last week, I moved all my eBooks and Bookshare books from my computer to my iPhone, because I could no longer read them on my computer. I have since been greatly enjoying reading. I haven’t bought any new books as of yet, but I did download several books off Bookshare.

10. My mood still being pretty good. I can’t say it’s great, but it’s not bad either.

What have you been thankful for in the past week?

To Live a Meaningful Life

Posted on by Astrid

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Mental Health Ramble

Posted on by Astrid

I want to write, but I’m feeling stuck. A thousand thoughts are going through my mind. I’m not even sure that I’m being myself as I write this. Who am I, anyway? I don’t know. I can pinpoint it fairly clearly when I’m in one of my ego states. When I’m not, I doubt everything.

I would’ve had DBT yesterday, but my nurse practitioner was off sick. The psychiatrist would be calling me, but when she did, I pushed the wrong button. She left a message saying she wanted to call me because my nurse practitioner is off sick, but also to discuss “how things are progressing”. I’m guessing she’ll tell me off for wanting to go into supported housing, for feeling happy in developmental disabilities services and for not being sure I feel mental health treatment is benefiting me.

Right now, I’m not sure I care. I’m not sure whether I want to go the route my psychiatrist is wanting me to go, which is do DBT for now and be put on the list for trauma diagnosis. I don’t even know for sure whether my trauma symptoms are severe enough to warrant treatment, or whether I want them to be. Usually whenever I doubt this, it’s a sign that some memory or new aspect of myself is surfacing. I have no idea this time.

I feel, above all, that what I need is safety. This means being assured that I get the support I need. I’m mot sure my psychiatrist is of that opinion too. She told me at our last meeting in early October, that she felt day activities were underserving me, not challenging me enough. I panicked, called my support coordinator, who called the consultant psychologist involved in my case. She then E-mailed my psychiatrist. Maybe the way I did it, it feels as though I’m trying to use the cosultant to tell my psychiatrist off. That wasn’t my intention.

That being said, I do feel much more comfotable with my support team from the intellectual disability agency than with my treatment team from mental health. I don’t know whether that means I’m too comfortable being taken care of. I don’t know whether I care.

Anyway, my psychiatrist will be calling me again on Tuesday. Then I’ll be at day activities, so if I feel distressed by something she says, I can go to one of the staff.