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.
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?
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.
It’s Friday again, yay! Last week I skipped my gratitude list post. Not because I didn’t have much to be thankful for, but because I wanted to write some other things and was feeling sick with a cold. Today, I’m taking my chance to do the post. I have a lot to be thankful for this past week. Here goes.
1. The wonderful Christmas box I got last week. I already wrote about it last week, but I want to mention it here too. I particularly love Snowflake, the stuffed unicorn. I also loved the fleece blanket I got in my package. I sat covered in it on Saturday when my cold was at its worst.
2. My cold being almost over. I am still a little sniffy, but with how bad my cold felt last Saturday, I”m truly grateful it’s much better.
3. My staff being well again. My support coordinator was off sick for a few weeks, but late last week, she returned to work. She first visited me on Wednesday. My nurse practitioner, who was off sick even longer, returned to work this week too. I had a good appoitnment with him.
4. A Christmas meal at day activities. On Tuesday, we had a delicious lunch. It was a little chaotic, but good too.
5. Horseback riding again. It was rainy yesterday, but thankfully we could still go on an outdoors ride.
6. Eating delicious tuna macaroni with my mother-in-law. She went horseback riding with me and after that, I ate at her house. It was just the two of us, so I could decide what we had.
7. The application for long-term care being mailed. It was sent out yesterday. It was a little hard reading the application, because my staff had to fill out how impaired I am in various areas on a 0-3 rating scale. I got quite a few 3s.
8. My husband being supportive. He showed his support of me even when I disclosed some rather embarrassing aspects of the long-term care application (ie. The fact that I am quite impaired in my personal care). He knows to some extent, of course, but still it’s a little awkward to admit.
9. All the Christmas decorations at day activities and some at home too. I didn’t use to like those. In fact, the first Christmas of my psychiatric institutionalization, I even pulled them all off the wall on my ward. Now I like a little Christmassy cheer.
10. The weighted blanket a staff made for my day activities group. She gave it to us a few weeks ago and I may’ve mentiooned it before, but then I mention it one more time. I love being in the sensory room and lying under it.
11. Painkillers. I had bad shoulder pain last Tuesday and still it’s not completely gone. I also had a headache today. However, ibuprofen and paracetamol worked well respectively.
12. Christmas songs. I can’t get some out of my head, but it’s lovely. This year is the first year I can appreciate Christmas.
This list was a bit random in its order, but I can’t seem to reorder the items on my phone and am too lazy to open my computer. I hope you enjoyed reading it anyway. I looked forward to linking up with #TToT, but saw it had come to a close for 2018 last week. The linky also is no longer open, but I hope some of those who visit me from #TToT regularly, will leave me a comment anyway.
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.
What one piece of advice would you give your younger self?
One of the questions in The Self-Exploration Journal is simple, yet not so simple to answer. It is: “Where do you belong?” For today’s #Write31Days post, I am going to attemtp to answer this question.
I am a restless person. Even though I crave stability, I keep fleeing from wherever I am. I can never seem to find a place where I feel I belong.
I must say though, it probably has to do with control. I have a pretty horribly external locus of control. This means that I have a feeling that others or circumstances control my life, rather than life being a bunch of choices I make. This isn’t necessarily healthy, but in y case, it is somewhat realistic.
I grew up with parents who had my life planned out for me. I knew by the time I was nine that I’d leave the house at eighteen to go to university. It scared the crap out of me. Lately, I’ve been feeling an insider who holds these memories.
I left the house at nineteen to go into independence traing. That wasn’t what my parents wanted, but I for the first time in my life showed some major rebellion. Even then, I needed my parents’ albeit reluctant approval to actually take the step.
I continued to consistently seek approval from others for my major decisions. This may’ve been a major reason I got moved into independent living after the training home despite the fact that the staff and I agreed this wasn’t the best possible placement for me. The staff after all, had promised my parents they’d prepare me for independence.
I landed in a mental hospital three months into independent living. By this time, I’d lost every bit of self-determination I had. I didn’t know what I wanted and just let the psychiatrist admit me to the hospital.
I regained a small amount of self-determination over the years of my hospital stay, only to have it all destroyed by my last psychologist. She said I was being dependent, not for letting others make choices for me or for needing their approval, but for demanding care she felt I didn’t need.
Now I’m living with my husband. I don’t feel safe here. Not relationally – my husband is lovely. I mean that I lack the support I feel I need.
So I often flee this place too. I don’t feel like I belong. But will this ever change? Will I ever find the peace of mind to live a stable life without needing to constantly be on the run?
Maybe if I get into long-term care, I will. After all, then I’ll hopefully finally feel safe without the pressure of needing to be re-assessed for care at least every year. Then I can have goals that I can take years to maybe meet or maybe not. Maybe then I will find a place where I belong.
Welcome to day five in #Write31Days. So far this month, I’ve used a bunch of prompts from various sources already, each with a different perspective on personal growth. Today, I picked a prompt from one of my older collections of journaling prompts, a book of 100 self-help journal prompts by Francie Brunswick that I have in my Adobe Digital Editions. Adobe Digital Editions is no longer accessible with my outdated version of the JAWS screen reader, but I managed to get it working a little with NVDA, an open-source screen reader.
The prompt is to journal about your greatest dream or the ultimate goal you have in life right now. I do have goals, but if I have to be really honest, my biggest dream is to feel mentally stable and safe.
I have suffered with depression on more than off ever since middle childhood. My parents tell me that, before then, I was a cheerful, laid-back child. I still had social and emotional deficits, but they were manageable. According to my parents, my psychiatric struggles didn’t start until I was around seven. They blame it on my becoming aware of my blindness.
I am in contact with an autism-specialized consultant for getting me proper care. She says that many children with normal or above-average IQ and autism get stuck in school at some point. Usually the first point of actual breakdown is the beginning of secondary school. I remember this point really well. One day, in my first year of secondary school, only one month in, I wrote in my journal that I’d rather earn a high level high school diploma in six years than have to settle for a lower level with more special education support. In the years that followed, I kept hearing this inner voice: “YOu don’t want to go back to special ed, do you?”
The next point of breakdown usually happens in college. I finished one year of college only with a lot of support. Then I broke down at university. I never fully recovered.
Over the next eleven years, I resided in general mental health facilities until being kicked out for allegedly being dependent. People had control over my life all this while and I never felt safe. Now I’m away from the controlling professionals and my parents, living with my husband, but I still feel extremely unsafe.
I was originally going to write down my goal more specifically. I was going to write that my biggest dream right now is to get into long-term care. That sounds extremely off though. I’m still not free from the interalized stigma surrounding long-term care. Still, I think I should be too “high-functioning” for it. I’m scared that, if we apply for long-term care funding, the decision-maker will read this blog and say that someone who can write a blog, should not need 24-hour care. That’s a terrible misconception that could cost people their lives. And yes, that includes me.
Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.
Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regardign going into supported housing. There I said it and now I’m hoping my parents never read this blog.
Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.
However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.
It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.
Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.
So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.
We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.
Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.
On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.