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.

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?

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.

Gratitude List (October 26, 2018) #TToT

Posted on by Astrid

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.

Resisting an Impulse #Write31Days

Posted on by Astrid

Welcoe to day 16 in #Write31Days. Today, I picekd yet another prompt from The Self Exploation Journal, but I twisted it around. Thhe prompt was to write about the last time you did something impulsive. Instead, I am going to write about the last tire I resisted a destructive impulse

I have been struggling a lot over the past few weeks. My husband has been working extremely long horus this past week and has been very stressed about it. Thankfully, he contacted his manager on it today and will be working slightly more normal hours from tomorrow on. However, today he wasn’t home till 9:30PM.

I hadn’t slept very well last night, because my husband was stressed out yesterday and I took over his stress. In my mind, it became worse and worse, until I was imagining my husband dying in a crash with his truck today. Needless to say, I was quite tired when I got to day activities in the morning.

On top of that, one of the regular staff was off sick, so there was a substitute. Because this regular staff would remain on sick leave tomorrow, the staff worked out who to find as a sub. Wednesdays are the busiest days at day activities, so I was quite scared that one staff would need to handle the full group on her own.

By 2:30PM, I was very irritable. I didn’t understand the jokes people were cracking. I was constantly worrying too about how to make it through the evening. I got an impulse to elope. Instead, I decided to try to walk around the building on my own while the staff checked on me tha tI was headed in the right direction. I did fine.

My staff did notice that I wasn’t coping thoguh. She asked whom I could call if I wasn’t coping while home. I decided to call my mother-in-law right then and she informed me my husband had already asked that I could eat with my in-laws.

Had I actually given in to the impulse and run off, people would’ve been a lot more worried than they already were. Besides, since this was my second time going to day activities for a full day, I might have been suspended. I don’t think I’d have gotten in any physical danger had I actually run off, as the day activities place is in a very quiet neighborhood. However, I’m still glad I didn’t give in to the urge.

The Most Important People in My Life #Write31Days

Posted on by Astrid

Welcome to day 13 in #Write31Days. It’s getting harder and harder to keep up with the challenge, but I was reminded by my husband not to give up now that I have nearly two weeks’ worth of effort put into it.

Today, I’m making a list of the most important people in my life. I’ll also explain why these people are so important to me. I tend not to come across very appreciative of wht people mean to me. I mean, the people in my life right now are mostly very supportive, and yet I don’t tell them so that often.

1. My husband. Do I really need to explain? I first met him in 2007, when I was struggling to hold on living independently. He supported me throughout my 9 1/2 years in the mental hospital and through the nearly eighteen months we’ve been living together now. He also fully supports my choice of trying to get into supported housing, even if it means we can only see each other on week-ends. He’s also just the most loving person around. Hubby, I love you!

2. My in-laws. As regular readers know, I am in low contact with my own parents. For this reason, I’m all the more thankful to have my in-laws. My mother-in-law particularly helps me with important meetings and with other decisions I need to make.

3. My home support staff. I first met my support coordinator in August of last year, when I finally got approved for home support. At first, she mostly just monitored my care with my old support worker, but eventually, she had to step up more. She now sees me usually once a week. My new support worker – the old one was moved to a team in another area – sees me twice a week. They’re both very supportive and skilled and especially my support coordinator goes out of her way to help me.

4. My day activities staff. My assigned support worker is one of the nicest staff working at that group. Not that the other staff aren’t nice, but she is the one who most truly gets me. The other staff truly try too. I am so glad to be here. Now I must say my old day activities staff were nice too, but they weren’t equipped with the information to properly support me. Besides, the manager was probably more stacked against my “psychiatric” needs.

Who are the most important people in your life?

A Letter to My Younger Self #Write31Days

Posted on by Astrid

Welcome to day nine in my #Write31Days series on personal growth. Today, I chose yet another prompt from The Self-Exploration Journal. It asks what one piece of advice you would give your younger self if you could go back in time. Ths question couldn’t be more timely, as I’m facing a lot of regrets from the past right now as I face the decision to apply for long-term care. I am spinnning this questioon around a little and going to write a letter to my younger self. I don’t have an idea for the age of this younger self, but the piece of advice should be the same anyway.

Dear Younger Self,

This is your 32-year-old self writing. I want to reassure you that I see you. I see your struggles for autonomy, for self-determination. And yet, I see your struggles with your limitations. You have yet to come to terms with the fact that you’re multiply-disabled.

I see that peope try to control you. Your parents consider you worth parenting only so long as you prove that you’re going to give back by contributing to society. Your support staff try to please your parents, sending you out to live on your own despite knowing this isn’t in your best interest. Your psychologist in Nijmegen, no matter how helpful she is in some respects, still doesn’t provide you with the opportunity to go into the right type of care. She, like eveyrone before her, values your intelligence over your need for support. Your psychologist in Wolfheze blames you. She robs you off your last bit of self-determination by kicking you out of the institution without proper after care.

I want to reassure you. I see your needs. I’m fighting for them to be met. I don’t have enough support yet, but I have people around me who are fighting for it with me. I can’t promise you that you will ultimately get into long-term care, as that’s up to the funding agency to decide. I can however assure you that I’m fighting for you.

If there’s one piece of advice I could give you, it’s to fight for yourself. No-one can live your life but you. You don’t owe your parents anything. You’re past that point. Care staff do only their job. This isn’t to discount the good work my current care staff do, but it’s just that, work. They will eventually fade out of our life. Even your husband, the only person who will most likely stick by you for a long time to come, doesn’t have the right to control you. I know you want to please him, because you love him, but that is different. Pleasing your husband is founded on love, not authority, and it is mutual. Even so, your husband does not live your life. Ultimately, the only person who will live the entirety of your life with you, is you.

I don’t mean this to criticize you at all. I see how hard it is for you to stand up to controling people. But you’ll learn to do so in time.

With love,

Astrid

What one piece of advice would you give your younger self?

Struggle #WotW

Posted on by Astrid

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

What I’m Excited About for the Coming Week

Posted on by Astrid

Today, DM over at Pointless Overthinking asks what excites you about the future. This is a really timely question, in a kind of ironc way. You see, I was pretty badly depressed most of the day and found looking even an hour ahead hard. Now that I have gotten some more clarity of mind, I am going to make a list of things that excite me at least a little bit about the upcoming week.

1. My support coordinator coming over tomorrow. I texted her this afternoon to let her know I’m not feeling that well. She had just come back from vacation this morning, so I felt pretty guilty for having texted her, but the feeling of despair was stronger. At around 6PM, she called me back. She would originally only visit me on Thursday, but she offered to see if she could come tomorrow too. I said I’d much appreciate that. At 4PM, she’ll be here.

2. The good weather forecast. It’s said to be sunny and around 27 degrees Celsius here tomorrow.

3. Celebrating my seventh wedding anniversary on Wednesday. My husband already announced that he’s going to take pizza home after work then. I love pizza, particularly from American-style pizza chains like Domino’s and New York Pizza.

4. Horseback riding on Friday. Do I need to say more? Oh, I love Angie!

This isn’t all that much, but I’m still a little bit more cheerful now that I’ve written these things down. It isn’t that I’m magically no longer depressed. However, like gratitude for the things that happened in the past, excitement for things that are going to happen in the future, may help some.