Monthly Archives: November 2018

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!

Self-Care: Doing Absolutely Nothing

Sienna over at Therapy Bits wrote about self-care today. She had a day of doing absolutely nothing, as she worded it. I loved the idea. Too often, my attempts at “self-care” include making all kinds of resolutions to do things for myself and not doing anything at all. Like, I’ve been starting and restarting blog posts for today at least half a dozen times, thinking I needed and wanted to write. However, then I quickly deleted the post again, thinking it was pointless. Maybe it is, but maybe that’s the point.

Self-care, to me, means listening to your own body and mind without judgment. It means not considering what others will think of your attempts to care for yourself (within ethical and legal limits, of course).

I consider writing an important act of self-care, but I also often judge my blogging attempts. I don’t write often enough, or my writing isn’t good enough, or whatever. Today, I am setting these limiting beliefs aside and just taking care of myself.

Besides writing, another good self-care practice is meditation. I often find myself judging myself over not doing it enough too, or not being focused enough when doing it. At other times, when I do successfully meditate, I find that the effect wears off quickly and I end up beating myself up over that.

Today, I have been looking at affirmations and inspirational quotes. I love them, but I still find myself wanting to do something “productive” with them. Like, several of these blog posts I started then deleted, were quote-of-the-day posts that I deleted for being pointless.

Maybe the point of self-care, of this blog and of my life in general is not to fulfill other people’s expectations of me, but to be who I am. To be who we are. There, Sienna’s “doing absolutely nothing” sounds appealing. I do “nothing” much of the time, but then I’m usually beating myself up over it. What if I could stop judging myself and start being in the present?

Gratitude List (November 23, 2018) #TToT

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?

My Favorite Holiday

Carol anne’s most recent question of the day is about holidays. She asks us what our favorite holiday tradition is. She herself loves Christmas for its presents. My favorite holiday is also in December and we also celebrate it with presents. Today, I am going to share about that.

First of all, we’re not one for holidays. We don’t like the adjustment and lack of structure. However, we love getting presents. As such, our favorite holiday is Santa Clause. It’s celebrated here in the Netherlands on December 5.

Santa Clause is in many ways similar to Christmas in the United States. It is celebrated on December 5 in honor of St. Nicholas’ birthday. In reality, St. Nicholas, who isn’t a real saint in the Catholic church anymore, died on December 6.

Santa Clause is celebrated with lots of presents, which the Santa is said to deliver through the chimney. they are usually packaged in a surprising kind of way and it’s a tradition that Santa Clause leaves a poem for the children. These poems are intended to be a bit moralistic, telling the child what they need to learn next year to be a better child.

There is also a lot of candy that’s specific to St. Nicholas. I love most of these candies!

As young children, we of course believe that Santa Clause is real. I was about eight when I learned that he isn’t. One of my fondest childhood memories is of my father playing Santa Clause’s helper Black Peter being stuck in the chimney.

I obviously no longer believe in Santa Clause, though I’m not sure what the littles will think if I say this. As an older child, after I’d stopped believing, I found it very hard to play along with the game. Now though, I’m enjoying it. Most of my fellow clients at day activities believe in Santa Clause, which makes the holiday extra magical for me too.

Phone Appt With Our Psychiatrist

Like I said last week, we’d have a phone check-in with our psychiatrist on Tuesday. We called the team’s secretary fifteen minutes after the psychiatrist was due to call us. Normally we wouldn’t be so impatient, but we were at day activities and didn’t have our phone with us all the time. The secretary put us through to the psychiatrist.

The phone appt was better than some of us had expected. That was mostly due to the fact that the psychiatrist didn’t berate us for trying to get into supported housing. She didn’t comment on it at all, which confuses us a little.

The psychiatrist talked about her proposal in early October to get us on the waiting list for a trauma/dissociation assessment. This had given us a lot of stress. Some of us want it, because they feel it’ll enable us to get trauma-informed therapy. Most of us are scared though. Some of us don’t even believe we’re dissociative. Some of us do, but don’t think anyone will believe us. In short, most of us would only want the assessment if we knew it’d validate us. That’s unlikely though.

The psychiatrist also talked about our E-mail to our nurse practitioner. We had written to him that we’re unsure whether we want to continue with our DBT skills training, because we fear we’ll need to make ourselves look better than we are. I’m not even sure what whoever wrote that E-mail meant by it, but I know change is scary.

The psychiatrist now proposed to give us a “break” from treatment. This’d mean our GP would handle our medications and we’d basically be discharged from the mental health team. We could still get some sessions with our nurse practitioner to help us create a good crisis prevention plan for our support staff.

Many of us have all sorts of mixed feelings about this. Some feel relief, while others feel fear. Some cling to the wish for a trauma-informed therapist. Particularly the littles wish to be validated. I don’t know though whether that needs to be by a trauma therapist. They have so far felt most validated by our intellectual disability agency staff, after all.

Mother As Source

I was finally able to read The Emotionally Absent Mother again, since transferring it from my computer to my iPhone. Until I did this, I was unable to read any of my EPUB eBooks, because the program I used for it was no longer supported by my screen reader. I missed reading this book in particular, since it had a lot of eye-opening questions in it. I last wrote about it last August, when I shared about good enough mother messages. Now, I am moving on in the book and starting with the roles good enough mothers have. The first one is mother as source.

This section starts with the assertion that mother is what we’re made of. It goes on to assert that, both literally and on a more spiritual level, we come from mother. Literally, we come out of her womb. Spiritually, nature is often seen as coming from the ocean, which is in mythology seen as a mother goddess.

This whole assertion seems a bit off to me. Like I said in my post last August, I was raised primarily by my father as a child. Obviously, I came from my mother’s womb, but this is hard to imagine.

One of the thought-provoking questions in this section is to imagine yourself in your mother’s womb. If you can’t imagine this, you are encouraged to imagine being engulfed by her energy. This gave me uneasy feelings. I have never felt able to see that I come from my mother. In fact, my parents used to joke that the neonatologist brought me into the world, not my mother.

Good enough mother-sources are able to create a positive and welcoming environment for their children with their presence. They make the child feel proud to be of her. As such, the next question in the book is whether you wanted to be similar to your mother or as different as possible (or anything in between). If someone were to say you’re so like your mother, would you be proud?

I have to clarify here that my mother herself didn’t and still doesn’t have the healthiest self-esteem. She used to say, and it came across only half jokingly, that I inherited all my bad characteristics from her and all the good ones from my father. As untrue as this is, I didn’t grow up feeling proud to be like my mother, because she didn’t convey that she had any characteristics to be proud of.

With respect to my father, who primarily raised me, I wanted to be like him as much as possible. Until I was an adolescent, I saw my father as the ultimate embodiment of success and every other positive quality. Then I started realizing that he too has his flaws. I now feel more closely related to my mother than to him.

The next question is whether you can imagine being proud to be of your mother. Do you identify yourself in relation to her? My short answer to this is “No”. I identify myself more in relation to my mother-in-law than my own mother.

In short, I do not feel my mother was able to be a good enough source. Of course, physically she wasn’t, by no fault of her own. By this I mean that all her pregnancies were complicated and the one with me ended in my premature birth. I don’t want to say that somehow she rejected me, because I know she didn’t. Once I was born, in fact, I was more unconditionally – or should I say less conditionally? – welcomed by her than by my father.

Of course, the stress of having had four pregnancy losses prior to being pregnant with me, could’ve caused her body to be less welcoming to a fetus. That, however, and I want to be very clear about this, isn’t her fault, or anyone’s fault. There is nothing my mother did to cause my premature birth!

Blogging on My iPhone

Man, it’s been so long since I last wrote! I really want to write, but I don’t know what about. I’ve been starting and restarting this blog post a few times. I write it on my iPhone to see if I can get the WordPress app working properly. So far, it seems to work really well. That doesn’t get me out of writer’s block though. 🤣

My husband said on Monday that he believes I’ll buy one more laptop before doing everything on my phone. He says smartphones are the future, so he recommended I try to do most of my work on my iPhone. Over the past few days, I’ve been trying to do this. Not just to satisfy my husband, but also because my rather outdated version of the screen reader on my laptop doesn’t support an increasingly large number of apps. Like, it doesn’t work with Kindle, Adobe Digital Editions (which I used to use for eBooks) or even Firefox or Thunderbird.

So I’ve been trying to transfer my stuff from my computer to my iPhone. I started with books, because my inability to read those on my laptop was frustrating me the most. Now I can read all my books again, yay!

Also, I discovered this afternoon when at my in-laws’ house, that I can actually work my mother-in-law’s iPad without any difficulty. Isn’t it amazing that I can now just use any iDevice without the need to install special software? I wish computers were the same.

I am not sure what else to share right now. It’s still a bit awkward blogging on my iPhone, but I’ll hopefully get used to it real soon.

To Live a Meaningful Life

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

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.