#WeekendCoffeeShare (December 29, 2018)

Oh my, it’s Saturday again! This means it’s been nearly a week since I last wrote a blog post. I really wanted to write more, but I’ve been feeling badly uninspired. Today, a few ideas are floating through my mind, including several blog challenges. However, I’m finding that I struggle to put much effort into a blog post. For this reason, I’m settling on a #WeekendCoffeeShare post.

If we were having coffee, I’d ask you how your holidays have been. Mine have been good but exhausting. I went to my parents for Christmas Eve and stayed there overnight. It was okay. We managed to avoid discussing my life, which is a good thing, since my parents are very disappointed in how I live my life. Like, my mother can feign a bit of interest in my activities at the day center for severely intellectually disabled people I attend. My father can’t even pretend to be interested. I’m fine with it, sort of. At least by avoiding talking about me, we don’t risk ending up in a fight. It was a much more relaxed visit than the ones at which I’ve tried to talk about my life.

If we were having coffee, I’d share about the gourmet dinner we had on boxing day at my in-laws. It was fun and tasty, but I did end up with a lot of IBS symptoms for a few days following it.

I’d also share about my plans for buying a Macbook. I did share this with my parents and sister on Christmas Eve. I’d not even told my husband before, because Macbooks are rather expensive and I was afraid he wouldn’t approve. Not that he has to. Buying a Macbook would mean I could use its built-in screen reader and no longer depend on JAWS, the main screen reader for Windows, which costs like 1000 euros and hasn’t been improved much sinnce it was first released. In theory, I could get JAWS paid for by health insurance as a needed adaptation, but I’ve been waiting for my insurer’s approval for nearly a year. My husband was in fact pretty supportive. We found an older Macbook Air model for a reasonable price. I can’t wait to go to the store to take a look at it.

I don’t have any plans for the week-end. Besides resting, that is. I’ll probably just chill out with some TV shows or books. My husband’s oldest sister is going to visit us for new year’s eve. That should be fun.

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.

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.

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?

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?

CP Conference Last Saturday

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Gratitude List (October 26, 2018) #TToT

Man, I really am falling into a writing rut. I don’t even know why. I’m still not feeling too well, but I wouldn’t say I’m seriously depressed either. For a bit in early October, I did feel extremely low, bu I picked up the pieces again reasonalby soon.

Today, to get myself motivated for writing again, I’m participating once again in #TToT. It’s not a weekly gratitude list anymore and I may be sharing some things I’ve been grateful for over the past few weeks.

1. A skirt-wearing day in October! This was already a few weeks ago, but I’m still so thankful for it. About two weeks ago, the temperature rose to 26 degrees Celsius and I loved it!

Generally speaking, the weather has been extremely mild here with hardly any rain. We got some rain only over the last few days and that wasn’t a lot. Today is one of the first days it’s really rather cold.

2. Sleep. Like I said above, fall weather came late this year but it well and truly came. I am very sensitive to cold, so I’ve been complaining for a few days that it’s cold already. This means that nothng’s cozier than crawling under the covers against my husband or with my sensory cat. The sensory cat is a soft toy that can be put in the microwave and then gives off heat and a lavender scent.

3. Swimming. At day activities, we go swimming every other Tuesday. Two weeks ago, I was a bit sick, so didn’t go. This week I did though. It was lovely. My Fitbit activity tracker says I swam 1200m total, which I can’t believe but oh well.

4. A full day at day activities. Three weeks ago, I got permission to come to day activities one full day a week in addition to the three other mornings. I now go on Tuesdays for a full day and Mondays, Wednesdays and Fridays in the morning. I am still settling in a bit but so far I love it.

5. Making smoothies. I really, really need to get into a healthier eating habit again. I haven’t been on the scale in months and I’ve probably gained lots of weight. To get myself motivated, I bought a lot of frozen fruit and a can of soy milk last Monday. Bananas were sold out, so my husband bought those on Tuesday. Yesterday, we made a banana-strawberry-soy milk smoothe and it was delicious!

6. Horseback riding again. Some of my fellow clients at day activities go horseback riding at my riding school on Friday afternoons. I go on Friday afternoons too, but usally the class after theirs. Today, one of these other clients was on vacation, so my staff offered to ask whether I could come in her place and I could. My assigned support worker from day activities walked beside my horse. It was a lot of fun!

7. My very accommodating staff. My support coordinator and home support worker are going out of their way to help me. So are my day activities staff. Particularly, they offered me to come to day activities two full days on December 27 and 28, since the other days of that week, the center is closed for Christmas. They’ll have room for me even on that Thursday, which is normally my day off. I’m so grateful for this!

8. Accessible games on the iPhone. I never took much of an interest in accessible computer games, because I believed most would be very boring. Now this week I decided to take a look at the AppleVis directory of iOS apps in the Games category. Of course, most games that are really popular with sighted people, are totally inaccessible. However, some accessible games are pretty cool after all. I so far downloaded Dice World, which is a collection of six dice games, and Alter Ego.

Alter Ego was originally created as a fully text-based game in 1986 but was adapted for use on the smartphone. It is a game in which the scenario is that you’re born and will eventually die. The life you lead in between will depend on your answers to a lot of multiple-choice questions. On my first round playing, I chose to be a very angry, rebellious baby and ended up with burns from an iron in infancy and killed by a kidnapper in childhood.

9. Twister fries! I have no idea whether twister fries exist in other parts of the world and, if so, whether they’re really called twister fries. They are my favorite type of fries, but they had apparently been taken off the menu at my local cafeteria. Last week at his once-a-week round to the cafeteria, my husband informed me that he had a nice surprise for me and it turned out they were back. I enjoyed them both last week and this week. I also love love love the African-style burger they have on the menu.

10. My mood being slightly better. Like I said, I had a really low few days earlier this month. Over the past two weeks or so, my mood seems to have been slowly but steadily improving. I cannot say I feel good, but I don’t feel that bad either.

Ways to Take Better Care of My Body #Write31Days

Welcome to day 14 in #Write31Days. Last week, I wrote a post on the topic of what my body is telling me. Today, I’m writing on a similar theme. The prompt from The Self Exploration Journal I’m using today supposes that your body is a temple. How could you better take care of it?

There are many ways in which I could take better care of my body. I’m already doing a lot better though than I used to. Like, until I was eighteen, I wouldn’t touch toothpaste and would brush my teeth with just water. Then, I went to the dentist to find out I had seven cavities. Filling them (without anesthetic) was horrible. From that point on, I started using toothpaste, buut I still had trouble sticking to a regular teeth-brushing routine. I struggled with this for many years to come and have only recently been able to consistently brush my teeth twice a day. I’m still not doing it very well, but I’m getting better.

Another way to take better care of my body is by getting off my behind. As a child, I was fairly active, but my activity level declined sharply in my teens. I got a computer, which meant hours upon hours of screen time. At this point, I’m still pretty sedentary, although I love walking. Since I cannot leave the house on my own, I need to think of ideas to fit in more activity at home. I already go on the elliptical regularly, but I’m thinking I could be dancing too.

Sleep is another aspect of body care that I’ve improved in. As a child and teen, I’d get no more than five to six hours of sleep a night. Now, I make sure that on week days, I get eight to nine hours of sleep. On week-ends, I get much more. That probably means that I’m still not fully rested from those eight to nine hours on week days, but I do’t know how to fit in even more sleep.

An aspect of body care in which I really need to pick up the pieces again, is food. I am doing better than I was when in the institution, when I’d binge on candy twice to three times a week. However, I’m still snacking a lot more than I should.

In what ways could you take better care of your body?

20 Things I’m Grateful For in Life #Write31Days

Welcome to day twelve in #Write31Days. Man, I’m late writing my post today. I really planned on writing two posts today, one for #Write31Days and the other for Ten Things of Thankful. I may write a #TToT post for this week tomorrow anyway, but I also found a great topic that fits both #Write31Days and #TToT. It is to list twenty things (or people, I assume) you’re grateful for in your life. Here goes.


  1. My husband.

  2. My family. Even though my family of origin isn’t very supportive, they are still there. My in-laws are especially importantt to me.

  3. My great team of home support and day activities staff.

  4. My online friends. I don’t have any real-life friends other than my husband, but I appreciate the network of supportive people online.

  5. Our cat, Barry.

  6. My relatively good physical health.

  7. The fact that I’m mentally stable.

  8. More than enough food in the pantry.

  9. A roof over my head.

  10. My computer and iPhone.

  11. Social security.

  12. Never having had to worry about money.

  13. A relatively good health care system. It could be better, but it could also be a lot worse.

  14. Psychiatric medication.
  15. The sensory room at day actvities and sensory supplies at home.

  16. Sleep.

  17. Being a lot fitter than I used to be.

  18. The readers of my blog. I can’t seem to stick to just one blog project forever, so I’m glad some people keep following me.

  19. The weather. It’s really good for October right now, but generally speaking it’s never all that bad.

  20. Being alive!

I must admit that in writing this post, I did cheat a little by checking back at a similar post I’d written several years ago. I could probably think of enough things without cheaitng, but that would take me longer, and it’s now time for bed.

Weekly Gratitude List (September 14, 2018) #TToT

I’m still not doing very well. Depression seems to be sinking in deeper. Because it’s only been a few weeks, I’m still hoping I’m just having a bad mood for a bit.

Kristi shared in a comment on my #TToT last week that her friend who started the link-up, did so to cope with her depression. For this reason, I’m trying to list the things I’m grateful for again too.

1. A good consultation meeting on Monday. Like I said on Monday, I discussed my options for getting appropriate care. An ideal situation would be that my husband and I could live together but close by a care facility. Since this is most likely not possible, I may have to choose between managing as I do now or going into supported housing. As it turns out, my husband is supportive of me regardless of the outcome. He says he’ll stick by me even if we can only see each other during the week-end.

2. My mother-in-law. On Tuesday, I was feeling so depressed that I didn’t really feel safe staying at home alone. I didn’t have my PRN medication at hand, so couldn’t just sleep it off either. I texted my mother-in-law and she offered to take me to my in-laws’ house. I feel so relieved that she did.

3. My in-laws’ dog, Bloke. While at their house, my mother-in-law took me to walk him. We joke that he’ll be a trained guide dog by the time he’s eight. He is a labrador retriever, so the right breed, but he’s five already and pretty disobedient.

4. My physical health. I had a nasty cold early in the week, but am feeling somewhat better now. Not great, but good enough to go on walks and to exercise again.

5. Nice staff at day activities. I was able to talk some with them and this morning, one took me on an early walk. One of the staff can be a bit blunt and I’ve had a few issues with her, but overall everyone’s nice.

6. Drinking a nice latte with my support worker. Because my support coordinator is on vacation – she’ll be back next week -, my support worker offered to take me on a special activity yesterday. We drove to a cooffee house in her town. I’d never had a real latte, just instant cappuccino. It was really nice.

7. French fries. Both on Sunday and today, my husband and I ate fries with a snack for dinner. Don’t tell the dietician – not that I have one -, but it was delicious. Overall, I’ve not been watching my diet and have been overeating way too much this past week. Let’s hope this depression thing lifts and I will be arsed to eat healthfully again.

Linking up with #TToT again.