Another Crisis

Posted on by Astrid

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

Peanut Butter-Chocolate Smoothie Bowl!

Posted on by Astrid

Hi all, how are you? I had a better day yesterday than Monday. Didn’t sleep much at all Monday night, because I was so excitedly browsing sites for soap making recipes. However, I wasn’t really tired or grumpy at all.

Today was even better. On Wednesdays, the staff interns at day activities usually do a cooking activity with me, as most other clients are off to a weekly music performance in the assembly hall. I hate the music performance but love cooking, so that’s a win-win. One of the interns changed her schedule, so isn’t on on Wednesday anymore, but the other still is. Today, we made a smoothie bowl. It didn’t turn out as well as I wanted. Particularly, we used a little too much milk.

What We Used

  • 1/2 cup milk. The original recipe had us use 75ml of oat milk, but I thought that would be too little. Apparently not. Half a cup, so roughly 125ml, made the smoothie a little too thin. As a side note, we used regular cow’s milk.
  • 1 1/2 bananas. We used one for the smoothie bit and the other half on top.
  • 1 tablespoon peanut butter. The recipe I used had us use two tablespoons, but I think that would’ve been way over the top.
  • 1 tablespoon cocoa powder. I can’t remember how much the recipe said we needed to use.
  • A handful granola. This is spread on top of the smoothie.

This made for one large bowl.

How We Made It

First,, I peeled the banana and cut it into slices. I had the intern do the half banana that would be used on top, as I doubted my slices would be thin enough. Then, I scooped the banana, peanut butter, cocoa powder and milk into a measuring cup. I then mixed it using an immersion blender. I have a regular blender at the care home, but had forgotten to take it to the day center. The intern poured the mixture into a bowl and we added the granola and sliced half banana on top. You can also add coconut chips.

How Did It Taste?

It was delicious! Like I said, it was a little too thin. I had expected the thickness to be like custard, but it was more like a milkshake. The chocolate and peanut butter tastes were really well mixed. The smoothie almost tasted like chocolate-coated peanuts. There were hazelnuts in the granola, which tasted extra good when combined with the smoothie. Overall, I loved the activity and the result.

Linking up with the Wednesday link party.

PoCoLo

A Mixed Monday

Posted on by Astrid

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

Essential Oil Diffuser!

Posted on by Astrid

Today we had a Christmas lunch at day activities. It was good. We got a hamburger, salad and ice cream. At the end of the day, we also got our Christmas presents from day activities. It’s a tradition here in the Netherlands that employers give their employees a Christmas package (usually a box with foods and a small gift). Though we aren’t really employees, our day activities gives us a present too. I had been more or less pestering my staff for an essential oil diffuser. A fellow resident at the care facility got one as a St. Nicholas present on December 5. I have at least one and probably two at home already, but they work with a fan and hardly give off any scent. The one my fellow resident got, works with water. You add a cup of water and a few drops of essential oil to it and then it somehow heats the water or otherwise diffuses the oil. I had had such a diffuser a few years back but that one had a lot of safety warnings on it and my husband was pretty sure I’d harm myself using it, so I returned that one to the shop.

Anyway, we did get the essential oil diffuser! It’s a cheap one from something similar to the Dollar Store, but I love it. Right now, it’s diffusing a bit of vanilla fragrance oil that I borrowed from the fellow resident, as I don’t have my EOs with me here yet. Its scent is a lot stronger than what came off the fan-based diffusers. I checked and it doesn’t seem like this diffuser is actually heating the water. Don’t know how else it produces the smell, but oh well. This particular diffuser also has lights in it that change color and it actually releases a bit of mist. I can’t see the colors, of course. I’m curious to know what this diffuser will do when I diffuse eucalyptus essential oil. I tried this in the fan-based one and hardly smelled it, even though eucalyptus is supposed to be a really strong scent. This diffuser has only a small water reservoir, so you can only add five or so drops of EO. This means I can hardly make any blends, but who cares? Maybe I’ll figure out blending tiny amounts anyway.

Dream #SoCS

Posted on by Astrid

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

#WeekendCoffeeShare (November 10, 2019)

Posted on by Astrid

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

The Wait Is Over…

Posted on by Astrid

Today, V.J.’s Weekly Challenge is all about waiting. It’s an interesting topic, considering that, as I said before, it’s been twelve years this week since I embarked on my journey to finding the right care. The wait is over. On June 4, exactly five months ago today, I was granted long-term care funding. I moved into the care facility on September 23.

It was an extremely long wait. Twelve years is roughly fifteen percent of a person’s lifetime, and they covered almost my entire adult life so far. In other words, I spent most of my adult life waiting. And now it’s over.

And yet, I don’t feel the sense of relief I was sort of expecting to feel. I, after all, hadn’t put my life on hold while waiting for this magical moment. I’m glad I didn’t, as that would’ve meant I didn’t have a husband now. You see, originally, when he told me he was in love with me in January of 2008, I planned on waiting to reciprocate his love until I’d moved into supported housing. I’m glad I didn’t wait.

And yet, my life did seem on hold in other areas for all of these years. I was always in a waiting position at least on some deep, emotional level. And now I can stop waiting and start living. I hope.

Then again, can I truly let go of that paralyzing feeling of apprehension that I’ve carried with me all this time? I still feel like I’m in waiting mode. Hibernation. This long-term care placement still feels temporary to me. Then again, well, guess what, life is temporary. I’d rather get a grip on it than spend the next so many years waiting for some magical miracle that won’t ever happen to make me feel all good.

Lately, I’m constantly reminded of a comment one of my fellow patients on the locked psychiatric unit made in those early days of my hospitalization. I can change my environment all I want, but I’m still me and I need to look to change myself instead.

Tomorrow, I’ll have a review with the behavior specialist and my home and day activities staff. I already discussed with my home staff wanting to get more out of my day than I do now. I came up with the idea of taking my Braille display and external keyboard with me to day activities, so that I can do more stuff on my iPhone than simple dice games and texting. I did this today and unfortunately felt immediately overwhelmed when I tried to read a blog post while a fellow client was making noise playing with macaroni. That almost made me give up and retreat into hibernation mode again. I hope I won’t give up though.

Validating Jane?

Posted on by Astrid

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

#WeekendCoffeeShare (September 29, 2019)

Posted on by Astrid

Hi everyone, how are you doing? I have had a for me incredible amount of coffee for a Sunday today, so am feeling pretty energized despite it being nearly 9PM here. This evening though, I chose two cups of green tea and two apple and peach flavored soft drinks. Anyway, I’m joining in with #WeekendCoffeeShare again.

If we were having coffee (or green tea or a soft drink), I’d share that my transition into the care facility went relatively smoothly. I moved in on Monday. I do miss my husband, obviously, but am mostly enjoying my time being here. I feel, overall, a lot more relaxed than I did when still living semi-independently.

If we were having coffee, I’d share that the house-buying process was finalized last Wednesday. As I said in my previous post, the paperwork was somewhat stressful as I couldn’t read or sign the agreements due to being blind. That got sorted though thanks to a very accommodating solicitor.

If we were having coffee, I’d share that my husband has been very busy doing odd jobs in the new house. I muted the house-related WhatsApp group because, not being there, I couldn’t conceptualize what all was being done. However, I guess in a few weeks, I’ll like it in the new house. I saw it for the first time on Wednesday before we saw the solicitor and it’s larger than I expected.

If we were having coffee, I’d share that I’m excited for my husband to come over here on Thursday. He originally said he’d come by either MOnday or Friday, so since I hadn’t heard a thing yet, I assumed he was coming on Friday. Today he said though that, after the final inspection and handing in the keys to our old house, he’d travel my way. He said we could have lunch at an Australian restaurant that’s in a nearby town.

If we were having coffee, I’d share that I am totally in love with all the sensory equipment at both the day center and the care home. At the day center, there’s a snoezelen® room. I spent some time on Thursday lying next to the bubble unit and on Friday lying on the waterbed. At the home, there’s a room with a rocking lounger. The staff also retrieved a kind of teeter board from another client’s room. That client has a swinging chair that’s hers but I was allowed to sit in it in her room for a bit.

If we were having coffee, I’d share that the care facility food is pretty good. I got mashed potatoes twice this week, which is one of only a few things I truly can’t stand, but they were able to swap my meal with someone else who didn’t mind mashed potatoes. My husband would say I’m a pretty picky eater, as I also had instant noodles one day when we actually got spaghetti carbonara. I think I can make myself eat that though and I won’t put it on my dislike list unless it’s very easy to do so.

If we were having coffee, lastly I’d share that I did have a relatively good amount of physical activity this past week. I don’t have my elliptical yet, as my husband will be delivering it on Thursday, but I did go for some walks. I don’t use my Fitbit right now, as I can’t find its charger and I don’t want to be discouraged by it, but I do feel pretty good about my activity level. I am eating pretty well. Now I guess I do still get too many calories for the amount of exercise I get, but I will hopefully soon find ways around that. At least I haven’t really craved binge food much. Finally, I also made time to do mindfulness meditations most days.

How was your week?

Saying Goodbye at Day Activities Again

Posted on by Astrid

I contemplated for a bit what to title this post. Seriously, I don’t hope next year will see yet another goodbye from day activities. I really hope I will be able to stay at the day center in Raalte much longer than I did at the one I left last year and this one. I know, I didn’t have to leave this center because the team or management no longer wanted me. I’m so glad I left knowing that the reason was mostly down to my own choice and circumstances.

So today I had my leave-taking party at day activities. First, we had French fries with a snack for lunch. I loved them. Most times I’ve gotten a choice of snacks, it was just between the two most commonly-eaten Dutch snacks. I told the staff I wanted a type of spicy snack called “mexicano” and suggested another client, who is non-verbal but about whom we know that she likes spicy food, might like it too. She definitely enjoyed it.

Then when having coffee break in the afternoon, I presented my group with “stroopwafels”, a type of Dutch caramel-filled waffle. I also gave each of the staff a small handmade soap. The staff gave me a large stuffed panda bear.

Then some clients and staff from other groups visited to say goodbye. I got a lovely huge card, the size of a small painting you can hang on the wall, from another group. It had a greeting in wooden tactile letters stuck on it. I also got chocolates. Another group gave me a card and two huge chocolate bars. Now my attempt at losing weight when I go to the care facility will have to be postponed a little

I do not know whether the clients on my own group will notice I’m gone. I guess they will, but most probably don’t have the words to ask about me. People from other groups have definitely been asking about me leaving for a while now and some say they’ll miss me. I will for sure miss them too.