This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.
On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.
On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.
On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.
On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).
Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.
Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.
Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.
Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.
I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.
My 2019 Word of the Year
It feels like forever since I last wrote, even though that was only last Friday. I don’t know whether that’s a good thing or a bad thing. I’ve been wanting to write a lot over the week-end and did in fact write some each day. Just not for my blog. Today, I am going to write a post I’ve been dreading writing, like each year. It is the post in which I announce my word for the year.
Now why is that so dreadful? Because I have a lot of trouble, and that seems to increase each year, choosing a word of the year. I feel like I need to focus on my word of the year, but then again that doesn’t seem to work. I mean, if life is a bunch of choices, focusing on my word for the year should make it happen. That just isn’t how it works, and I’m still undecided as to whether that’s because I’ve not focused on my word for the year enough or because of things outside of my control.
As such, this year, I am going to decide on a word that should be relatively easy to focus on. It shouldn’t be like a heavy weight on my shoulder, like “progress” or “be” were when I chose those words in previous years.
With no further ado, here’s my word for the year 2019: CHERISH.
The word “cherish” was suggested to me by someone in a trauma self-help group. I had wanted to choose words like “self-care” or “nurture”, except that I’d already had those as words of the year previously.
In the year 2019, I want to cherish myself. This means, according to the dictionary, to hold dear, to show loving affection. I want to be kind and loving towards myself. It also means something akin to “hold onto”. In this respect, I want to hold onto life. Because of that, I hope this year I won’t be acting too impulsively.
I also want to cherish the people who are important to me, most notably my husband. In the process of applying for long-term care, it’s sometimes felt as though I was abandoning him. That isn’t my intention. I want to remain with my husband for life. As such, if and when I go into supported housing, I want to make the most out of the time I’m going to spend with my husband. Until this happens, I’ll also hopefully be able to show lots of affection towards him.
What is your word of the year?
Gratitude List (January 4, 2019) #TToT
Yay, it’s time for my gratitude list with #TToT once again. I am also linking up with the Word of the Day Challenge, for which the prompt is “gratitude” today. Do you want to know what I’ve been grateful for lately? I love to share!
1. Two wonderful full days at day activities between Christmas and New Year’s. There were only about five clients there each day and two staff. On Thursday, I went for a walk with one of the staff. We also ate pancakes for lunch. On Friday, the staff drove the center’s van to a restaurant in a nearby village, where we had a drink. I had hot chocolate with whipped cream. One of the clients from my group, an older man who used to drink beers with his friends regularly before he declined from a brain injury, had an alcohol-free beer. I could tell he thoroughly enjoyed the experience. So did I.
2. Resting over the week-end. I was pretty tired from all the Christmassy stuff by last week Saturday. So was my husband, so we chose to have a lie-in. I normally feel bad about getting up at like noon and my husband doesn’t like it either, but neither of us minded.
3. Oil balls or whatever the English term is. These are fried balls made of the same stuff that pancakes are made of. They’re a traditional New Year’s snack here. I was nauseated from them for days, but who cares?
4. Not having gained any weight over the holiday season. That is, I may’ve lost then gained some or vice versa, but in any case I was at the exact same weight last Monday that I’d been in early November. I already mentioned this last Monday, but I’m still so grateful for it.
5. A long walk with my mother-in-law. On Wednesday, she visited me and we went for a walk into the next village. This was about a 5km walk that took us 70 minutes.
6. Horseback riding with my support worker. Yesterday, for the first time in a while, my support worker was available to assist me as I rode the horse. It was truly a lovely trip. While waiting on the taxi back home, a young man from my day activities came into the canteen. Once she’d made out that we knew each other, his staff prompted him: “Who’s that?” I was delighted to hear him say “Astrid!” I only see this man on one of my days at day activities and I hadn’t expected him to recognize me, so it was truly lovely that he did.
7. Fried chicken. Yesterday, my husband cooked a rather boring meal of macaroni with bell peppers and leek. He surprised me at the end by saying that, if I admitted this was the most delicious meal I’d ever had, he might have some chicken for me. So funny! We had wings and filet. I liked the filet better, so my husband gave that to me.
8. Getting a head massage. We havve a head massager at day activities. I love it and today, my staff were doing beauty stuff. I asked for the head massage first, but I also had my nails done.
9. Looking at an online store for sensory supplies with my staff. I already knew the store and have my sensory cat from there, but my staff hadn’t heard of it. They probably got the sensory room modeled by Barry Emons, the inventor of snoezelen, but his shop is harder to use and the itmes are more expensive than the store I found. I was totally excited ooohing and aaahing at all the lovely supplies and all the more excited because my staff was excited too. We might get some stuff for my day activities group.
10. Dancing. On Friday afternoon, one of the staff at another day activities group organizes a “prom” for the entire center. I only went once before, but today, I decided to go again. I loved it.
11. Eating French fries for the first time in a while. Today, my husband heard a doctor on the radio say that you need to go to the snack conrer once in a while or you’ll get fat, or so he said. The real talk was probably about crash diets not working, but I loved my husband twisting it to an excuse to get us fries. We also each had a burger with it.
12. The lovely blog interaction I’ve been involved with this past week. I’ve gotten more interested in reading and responding to other blogs and it probably pays off on my own blog too. Besides, I just love reading other blogs, as it inspires me too.
What have you been grateful for this past week?
Blogging
I am once again joining in with #JusJoJan. Yesterday I did write, of course, but I didn’t link up, since my post wasn’t for the prompt. Today’s prompt is to share about your blogging endeavors. Why did you start blogging? How did you come up with your theme? How has blogging affected your life? And so on.
I probably shared this on my older blogs a couple of times already, but I don’t think I jotted about my blogging on here. I was probably destined to be a blogger, as even as a young teen in the late 1990s, I longed for someone to read what I’d written. Not my parents, of course, but I was pretty open about my writing otherwise. My father at one point joked that I showed my new best friend my diary the first time she visited me. I didn’t, but I did show her some personal writings of mine. Those got her to feel pity for me. The friendship wasn’t healthy to begin with, as I was needy and clingy. The friendship ended not even half a year later. Today, I won’t go into that. It only serves to prove that I was very open in my writing from an early age on.
I got a computer with Internet access in May of 2002, when I was fifteen. Within six months of that, I’d started an online diary. The contents of that diary, unlike those of many of my later attempts at keeping a blog, are still available online. Their original location, on DiaryLand, might even still exist.
In February of 2007, I created my WordPress account and moved the contents of my diary to my first legitimate blog. This diary had over the years started to contain some more essay-like posts besides the diary-style navel-gazing. However, with DiaryLand, there was no way of organizing your posts by categories or tags. My parents criticized me for being too personal in my diary. I didn’t intend on becoming less so, but now I could put all my navel-gazing into a category called “Personal” for people to skip.
I have had three blogs (if I include this one) that were lasting. First, I had said blog moved from DiaryLand. Then I had Blogging Astrid, which I originally intended to keep alongside this blog. That didn’t work.
A Multitude of Musings, the blog you are now reading, is, in fact, a restart of another relatively long-lasting blog I wrote in 2011. I am a bit sad that I deleted its content years ago, but I can’t undo that. Still, my stats say the day I had the most views was in 2011.
Blogging has had a huge impact on my life. My husband checked out my blog – the one that had been moved from DiaryLand – before he asked to meet me in real life. This meant he already knew me pretty well before we’d first met. In this sense, my marriage makes up for the friendship I wrote about above, as my husband chooses to stick by me despite my openness. I don’t encourage him to read my blog now, but if he wants to, he can. He’s occasionally been cross with me for sharing something about him. I try only to share the positive now.
Why did you decide to start blogging? How has blogging impacted your life?
#IWSG: Am I a Writer?
About three years ago, I told my then day activities staff that the number one item on my bucket list would be to write my autobiography. I have said I want to be a writer too many times. Now of course I am a blogger, and my blog posts consist exclusively of words, but does that count?
To kick myself in the butt a bit, I am joining in with the Insecure Writer’s Support Group (IWSG). This is a group of (aspiring) writers who encourage each other via monthly blog hops, a Facebook group and more. I’m still not sure I belong there, as I don’t even know whether I still intend on ever publishing that autobiography, even if I get to write it. I am not sure I’m good enough to publish anything. Of course, I already got a piece published in an anthology in 2015, but does that really count? Besides, it was non-fiction and I’m still unsure whether the IWSG is intended for fiction writers only. Given that my biggest supporter in life, my husband, says my fiction is rather unimaginative, I don’t think I’ll ever attempt my hand at that again, even though sometimes I want to. Insecure I am, at least. The question is whether I’m a writer.
One of the ideas of the IWSG blog hop is to answer monthly questions about your writing. This month’s question is about questions: what are the most and least favorite questions people ask about your writing? I think my favorite questions are about my process and the least favorite ones are about the content. I hate it when my husband asks me what I’m blogging about, because I construct my blog posts as I write. I also write much better than I speak, so I would rather just show someone what I’ve been writing than summarize it. Then again, I don’t like showing those close to me what I’ve written either.
What about you? Are you an insecure writer?
My Hopes for 2019
Happy new year everyone! Today and hopefully throughout this month, I’ll be joining in with Just Jot It! January or #JusJoJan for short, organized by Linda G. Hill. Today’s prompt is to reflect back on 2018 or write about your plans or resolutions for 2019. since I already wrote about my 2018, I’m going to use this post to jot down my hopes, goals and plans for 2019. Here goes.
1. Find suitable supported housing. This is my main hope for 2019. Of course, given my experience with finding (or not finding) supported housing out of the mental institution, I don’t have my hopes up too high. However, I at least want to get long-term care funding approved. That way, even if I don’t find a housing place, I can get more support in my current home than I get now.
2. Get back on track with healthier living. I didn’t gain any weight over the holidays and in 2018, lost a pound or 500 grams, while I expected I’d gained. I’m proud of that, but I’m still obese. Knowing that I’ve experienced some time when my BMI was under 30 this past year, I badly want to lose those two or three pounds it takes to be back at just overweight.
More importantly though, I want to embrace a healthier lifestyle. I want to exercise regularly and eat at least somewhat healthfully.
3. Blog regularly. In January, participating in #JusJoJan means I’ll have something to write about each day, as Linda will be posting prompts. I plan on writing regularly throughout the year though.
4. Get a new computer. I have had this on my list of plans ever since 2017. This year, I’m serious about it though, as I finally convinced my husband too that my current PC is outdated. I am seriously considering getting a Mac, as that’d mean I could do without having to get a screen reader separate from the operating system. I already love my iPhone, but I feel I need a computer too.
5. Stay mentally stable. Over 2018, I’ve not had serious crises other than the one in January that eventually got me kickked out of my old day activities place. I’m still considering terminating mental health treatment once I’ve found suited supported housing. After all, I’m pretty confident that the depression I suffered early in 2018 and that required an increase in my antidepressant dose, was caused by my difficulties coping at home and at day activities. I do still experience trauma-related symptoms, but at this point, they’re manageable.
What are your hopes for 2019?
Small Accomplishments For Today
Yesterday, Girl with the Paw Print Tattoo wrote an interesting post of little accomplishments. She used these to focus on the positive rather than the negative. Like she said, it’s easy to focus on what we could’ve done better, but it’s more helpful to focus on what we did achieve. Today, on the last day of 2018, I am sharing a list of my accomplishments for the day.
1. Got out of bed before noon. My husband got up by 8AM, but it was good enough for me to be up by 11:30.
2. Got showered and dressed. Most people don’t understand that this costs me a lot of energy. I don’t understand it myself sometimes, as I’ve been doing it by myself for so many years it seems obvious. However, it still takes more effort than it would most other people, I think.
3. Ate relatively healthily and not too much. Of course with it being the last day of the year, we had snacks and we had croissants for breakfast too. However, I didn’t eat more than I should have.
4. Went on the elliptical for nearly 30 minutes. This isn’t even a small accomplishment, as it is quite big a deal. Last week, my husband criticized me for having stopped exercising regularly and eating too much. It’s been only a week, but I can already say I’m doing a little better.
5. Was able to sit in the living room with my husband and sister-in-law for two hours without needing to go upstairs to unwind. MY sister-in-law came by for an early new year’s celebration (she left at 9PM). Last year, I was so involved with my special interest du jour that I hardly paid attention to her. This year, I was even able to enjoy it.
6. Didn’t have a meltdown, despite the fireworks and all the things that are unusual on this day.
7. Writing this blog post. I originally didn’t intend on writing today, but then I saw the aforementioned post and I just had to copy the idea.
What “small” things did you achieve today?
2018: The Year in Review
The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. However, I want to do this review for myself if for no-one else. Here goes.
The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.
I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I intended 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.
In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.
I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the parts in me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.
With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.
In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.
Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particularly when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?
My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.
Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.
Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.
I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.
With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.
#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.
Recovery
Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.
I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.
The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.
I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.
Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.
I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.
Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.
A Multitude of Musings 