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.

Freewrite on My Transition Into Long-Term Care

Posted on by Astrid

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

#WeekendCoffeeShare (September 15, 2019)

Posted on by Astrid

Hi everyone, how are you? Let’s catch up over a cup of coffee or once again green tea in my case. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I’d share that this week was full of ups and some downs, though the downs weren’t as low as I’d expected. As regular readers of this blog know, I will be moving to the care facility in Raalte in eight days. My staff, my husband and I have been doing some preparation in regards to my leaving my current day activities and going to start up in Raalte.

If we were having coffee, I’d share that I finally told my mother I’ll be going to the care facility. I sugarcoated it a little, saying I’d be staying at my care agency in Raalte during the week and going home to my husband on week-ends. As a result, at first she wasn’t sure I’d be actually sleeping at the care facility. After a little “but I thought you were doing so well” and all, she wished me good luck at the place.

I am not 100% sure how to feel about it. In a way, this seemingly supportive attitude contradicts my memories from years before and that is hard to adapt to. However, I’m trying to be grateful for her support. I haven’t talked to my father or sister about it yet.

If we were having coffee, I’d share that my sister gave birth to a baby girl, Janneke Sietske, last Tuesday. She is named Janneke after my sister’s and my grandma who died last year and Sietske after one of my brother-in-law’s grandmothers. Janneke had some health issues early on and we haven’t been able to visit yet. We’re planning on visiting her next week though.

If we were having coffee, I’d share that today, my husband and I made some small banana soaps for the staff at day activities. I’ll give them to them on Friday, when I have my leave-taking party.

If we were having coffee, I’d share that my last appoitnment with my nurse practitioner went okay. He has referred me to the mental health agency in Raalte. I haven’t seen the referral letter, but he said he’d written about my trauma but that, for now, here and now work is most appropriate for me. I did try to get it through that ultimately, I do want to process my trauma. I’m not sure that will happen, as most likely I can’t get trauma therapy without at least a C-PTSD diagnosis if not DID/OSDD. Precisely getting my trauma-related issues assessed is a huge trigger for me.

If we were having coffee, lastly I’d share that I finally finished The Fault in Our Stars, which I started reading already three weeks ago. I will hopefully be able to finish at least one more book before the end of the month.

What’s been up with you lately?