Things Can Only Go Up

Like I mentioned earlier in the week, on Sunday I was in a major crisis. On Monday, the manager came to reassure me that I wouldn’t be kicked out of the care facility. I wasn’t convinced though and got stuck on a comment that seemed to invalidate my need for more support.

On Tuesday and Wednesday, I cried my eyes out. I felt that there’s no place where I truly belong. It didn’t help that my husband said I experience a lot of internal stress so wherever I go, I’ll take that with me. I’m pretty sure he meant it in a more positive way than I took it. However, I took it to mean I’m too wicked and needy and stressed for this world.

On Tuesday, I started envisioning a place I belong and don’t feel pain. Until that point, I had always assumed there must be a better place for me out there within this world. This had led me to check the care agency’s profiles for other homes pretty much on a daily basis. As of last Tuesday though, this “better place” became more like the afterlife. It wasn’t that I wanted to die, but I wanted the intense pain to end.

On Wednesday, I cried for what seemed like forever. I was crying alone in my room and at one point had the sense of clarity to press the call button. There is this extra staff who normally helps out between 6PM and 8PM. She came into my room and said she’d stay with me for the entire two hours. I cried and talked and let all my feelings out.

At one point, this staff asked whether I’d heard of one-on-one support. I had, but asked her to clarify it anyway. She asked me whether that sounded like something I might benefit from. I finally overcame my intense shame and said “Yes”.

Yesterday, I started the day off pretty sad and had some crying fits throughout the day. At about 4:30PM, a staff came to soothe me and said that that evening, I could sign something to get me more help. I wasn’t sure what she meant. Turned out she meant a letter to the manager requesting more support for me.

My assigned staff wrote the letter, with my input, that evening and I signed it. Now of course we still need to wait for the manager’s response. She may also need to request extra funding for me from the authorities. Even though I’ve known about one-on-one support for almost as long as I’ve been at this facility and have secretly wished I could get it many times, I don’t know that much about the technicalities. That’s not my responsibility though.

From now on, I believe the only possible way is up. Even if I don’t get the one-on-one support I need, the staff have a clearer understanding of my needs and will be able to help me more adequately. Also, with my signing of the letter, I sort of also signed for my wish to stay at the current home. I originally intended on breaking my habit of looking for another place today, but still checked. I wasn’t as affected by what I saw though.

If The Staff Saw My True Nature…: Reflections on Not Belonging

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

#WeekendCoffeeShare (November 8, 2020)

Hi all on this sunny Sunday! Okay, it’s past 9PM here and the sun has set already, but it was sunny during the day. I should really have taken a picture.

I just had my last drink for the day. However, the beauty of virtual coffee shares is that people can join in whenever they want. So grab a cup of coffee, green tea or water. I’m pretty sure there are also soft drinks in the fridge, but I rarely drink those now. Let’s have a drink and let’s catch up. As usual, I am linking up with #WeekendCoffeeShare.

If we were having coffee, I would tell you that this whole week, the weather has been beautiful. It was a little chilly some days, but not as cold as you might expect in November. In fact, today, I even took a walk with my husband without my coat on. I did of course wear a fleece vest. It was sunny and almost warm.

If we were having coffee, I would tell you that I canceled my sister’s visit for this week too. The reason this time is a combination of the stricter COVID-19 management rules and my husband wanting to celebrate his birthday with me this week-end. With respect to the former, for example, my sister could be visiting with her husband and daughter, but three adults are not allowed together outside. This would mean my brother-in-law wouldn’t be able to go on walks with me and my sister. As if the risk of contracting COVID is higher outside than inside.

Also, I wouldn’t be allowed to go to my husband’s after they visited. Or maybe strictly speaking I could, but it’d be against the spirit of the lockdown. My husband felt pressured by me to let my sister and family visit, but eventually it became clear he’d really like to have me over for the week-end to celebrate his birthday. His birthday is on the 12th, by the way. So since my husband’s birthday is more important than a random visit from my family, we’re going to reschedule that sometime after the worst of the lockdown has ended.

If we were having coffee, I’d share that I gave my husband an Airfryer for his birthday. He made us both thick fries in it yesterday. Even though I’m pretty sure he didn’t salt mine, or at least not as much as I’d have done, they were still delicious. My husband joked that we’d have vegan fries (duh!) but to make up for it, we would eat real hamburgers. They were great too.

If we were having coffee, lastly, I would tell you that I was in a bit of a crisis this evening again. I got majorly triggered by a staff raising her voice as she commanded me to go to my room. She had intended for me to seek the quiet of my room, because I was rapidly becoming overloaded with all that was going on with the other clients. Her wording that I’m not the only one (I’m pretty sure she didn’t say it that way, but that’s how I interpreted it) triggered me to feel that I wasn’t allowed to feel the way I did and was attention-seeking. This then quickly spiraled out of control. Thankfully in the end, I was able to talk it through with the staff and also write down my feelings. I did take a PRN lorazepam, but that’s totally okay.

What’s been going on with you lately?

#WeekendCoffeeShare (November 1, 2020)

Oh my, it’s November already! Can you believe it? I feel this year is going both really fast and really slow. How about you?

Today, I’m joining in with #WeekendCoffeeShare. I’ve had three cups of coffee already today and it’s not even time for my afternoon coffee yet. Then again, I was up at seven o’clock this morning. I’m thankfully not too tired as of yet. Let’s have coffee and let’s catch up.

If we were having coffee, I’d tell you that the weather is surprisingly nice. We were supposed to get a lot of rain this week, but so far, it’s been raining only some of the time. This means I’ve been able to go out for walks everyday. I didn’t get in my minutes in active heartrate zones, because most of the time apparently I walked too slowly. I also went on the elliptical once.

If we were having coffee, I’d ramble a bit about my idea of restarting the polymer clay hobby. I did this for a bit some years ago, but never got beyond a child’s level with respect to my sculpting abilities. Then again, maybe if the day activities staff help me read tutorials, I’ll be able to progress somewhat further. I’m not yet 100% sure I’ll actually invest in yet another hobby that might turn out to lead to massive failure. Okay, I’m not a failure at soap making, but I’m not a success either.

If we were having coffee, I would moan a bit about my diet. I’m not sticking to it 100% of the time, but maybe I’m doing an okay job of it. I don’t know, since I haven’t been weighed in yet. I, however, try to remind myself that everytime I make a healthy food choice, I’m doing a good job of caring for my body.

If we were having coffee, I’d share that my sister, brother-in-law and one-year-old niece were supposed to visit yesterday. However, on Friday, I had a slight cold, which wasn’t fully gone yesterday morning. I also had felt slightly out of breath Friday evening. That’s probably just stress, but I canceled the visit anyway. Today I’m feeling as well as possible. We’ve rescheduled for next week.

If we were having coffee, I would tell you that tomorrow marks the thirteen-year anniversary of my mental crisis. I still find the month of November hard for this reason.

I also have been struggling with the end of daylight saving time. I’m more tired than usual and find myself going to bed very early and getting up early in the morning too. My Fitbit has noticed, as it said I seem like a morning person. I’m not. That is, right now, I’m mostly hibernating, in that even though I get up early, I sleep a lot during the day. I can’t wait for spring!

What’s up with you lately?

Gratitude List (October 17, 2020) #TToT

Hello everyone! I hope you’re doing well. I am feeling okay. I’m not sure I’ll continue with the #Blogtober20 prompts, but I will attempt to publish a post everyday anyway. That’s a way of participating in the challenge too. Today, I am writing a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful I am alive. Last week, I was in a major crisis. Though I most likely would’ve survived the attempt at harming myself I was intending on, I am so grateful I didn’t harm myself at all.

2. I am grateful for my staff. They’ve been so nice and helpful lately. They aren’t mental health professionals, but they do a great job of helping me understand why I’m feeling overloaded or anxious.

3. I am grateful that my husband supports me through it all. Like I said last week, I was afraid he’d be frustrated with me for landing in crisis. I am so glad that he didn’t react with irritation at all, even though I’d have understood.

4. I had some delicious treats over the week. On Tuesday, a staff gave us cheesecake for her birthday. There was still some left over on Wednesday too. We also got banana bread then. Then on Friday, we had delicious home-cooked chicken with curry and mayonaise. Today we had homemade chicken and sausage rolls.

5. My mother-in-law visited me on Thursday. We went for a walk and drank a cup of coffee in my room. She also brought me a new bra.

6. I am happy with my new Fitbit Inspire 2. I ordered it on Thursday and it arrived Friday early afternoon. I am loving seeing all my stats in the Fitbit app. For example, yesterday I got 56 minutes in active heartrate zones, all in the fat burning zone of course. I doubt I’ll be able to get into the cardio or peak zone at all.

The tracker itself takes some getting used to, since it has a touch screen, which I can’t see. I keep accidentally turning Do Not Disturb on.

7. I am grateful for relatively good food for dinner. As of last month, I am allowed to choose between a selection of meals for dinner. Before this, I had to turn off foods I didn’t like. This got pretty complicated. For example, I’d say I didn’t like beans because otherwise I’d get them with just potatoes and meat and no sauce. However, turning off beans would turn off chilli too. This led to me occasionally getting just rice, for example. Now I still occasionally get a meal I haven’t picked, but that’s okay too.

8. I am grateful for macrogol. And for apples and other fiber-rich foods. I had been constipated for a bit early in the week, which led to bad bowel cramps. Thankfully, I feel much better now.

9. I am grateful the partial lockdown we’re in right now doesn’t lead to a no-visitors policy in care facilities as of yet. I am grateful I am still allowed to go home to my husband.

10. I am grateful for the ability to be grateful. I started a daily gratitude journal in the app Day One on Wednesday. I did so because I downloaded a free book on gratitude off Amazon and the first exercise is to jot down three things you’re grateful for each evening for a week. It truly helps me so far, as without my gratitude journal to look back on, I may not have been able to get to ten things of thankful.

What have you been grateful for lately?

#WeekendCoffeeShare (October 11, 2020)

It’s Sunday and I’m in definite need of some coffee. For this reason, I’m joining in with #WeekendCoffeeShare. It’s not time for my evening coffee yet, but maybe I can enjoy a virtual cuppa.

If we were having coffee, I’d share that the weather is gloomy. It’s been raining almost the entire day and it’s cold enough that I could use my winter coat.

If we were having coffee, I would tell you that I’m struggling quite a bit. Yesterday I landed in crisis. I didn’t sleep all night and was still feeling very tense by this morning. A walk didn’t even help, because I felt cold and was very tired and overloaded.

I am also struggling with what to tell my husband. The crisis was quite bad and I really want to be open to my husband. However, I fear he’s going to be angry with me for it, because in other places, this could’ve led to me being kicked out. In fact, I’m still worried that the staff are going to decide to kick me out after all.

It makes me feel sad that I, being of above-average IQ, am expected to make my own decisions regarding this stuff and make sure my family is informed.

I mean, of course it has its pros that I’m intelligent. If I had an intellectual disability, I wouldn’t be able to blog, for instance. I also wouldn’t have my husband. However, this discrepancy between my IQ and my ability to cope emotionally, is weighing me down quite a bit.

If we were having coffee, I would tell you that, as unlikely as it may seem now, the rest of the week was pretty good. I made some soap and experimented with baking soda modeling clay. I removed some of the figures from their molds today, but I think they hadn’t fully hardened, as they were still pretty brittle.

If we were having coffee, I would share that I’ve been loving browsing Amazon’s Kindle collection for books to get. I don’t want to buy them yet, but I did download a few free books.

I also finally got Listify on Apple Books. This is a book of journaling prompts (yes, again!) but most are list-based.

What have you been up to lately?

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

The Kindness of Strangers

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

Negative

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

Currently (August 2020)

It’s been forever since I last took part in Currently. That’s partly because the day coincides with the Insecure Writer’s Support Group posting day and partly because I cannot always think of much to say to the prompts. Today though, I’m feeling like writing and the prompts appealed to me.

Choosing

To take an Ativan to avert yet another crisis. Well, not quite avert, as it was already happening. I’m safe and relatively calm now that the Ativan has had about an hour to kick in.

Consuming

Banana chips and grated coconut. I bought a bag of both at a wellness store yesterday. Consumed all the banana chips in one sitting and put some of the coconut in my smoothie. Today, I actually ate some of the coconut as is.

Enjoying

Reading, of course. I spend a lot of the time with my face in a book, figuratively speaking, as I use my Braille display to read books on.

Add to my reading experience some calming music, for example a Robbins Island Music Group album, and some essential oil. I bought two essential oil blends at the wellness store yesterday and particularly love the one called Joy. The other one was called something like Sleep Well, so I may be able to use that tonight.

Ordering

Not anything right now, but the shoes I ordered last Monday, did arrive today. They’re brown with pink walking boots and I love them. I tried to explain to my husband what I’d ordered and he kept coming up with walking boots that cost like €200. Makes me feel I got quite a bargain, as mine cost €80. Of course, that’s still a lot of money.

Remembering

That no-one promised me a rose garden. I need to remind myself of this, because I seem to be dealing with a lot of fear of joy lately, as well as having a big case of “the grass is always greener on the other side” with respect to living situations. Maybe I just need to accept that the care facility I live in now isn’t perfect, but it’s as good as it’s going to get. This issue may be one reason I spiraled into crisis today.

How have you been?