Things Can Only Go Up

Posted on by Astrid

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 I Have a Good Day…: Ramblings on Fear of Joy

Posted on by Astrid

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

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

Posted on by Astrid

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.

Gratitude List (October 17, 2020) #TToT

Posted on by Astrid

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?

The Lockdown Tag

Posted on by Astrid

I don’t think anyone specifically tagged me for this tag, but I saw it on a number of other blogs. The idea is to answer a number of questions about life in lockdown. We just went into “partial lockdown” again, or really are going tonight, but the prime minister delivered the news yesterday evening. I think it’s about time I write about life in lockdown again.

1. Overall, how are you handling the quarantine?
I’m hanging in there. Now that at least some restrictions have been going on for over half a year, I’m coping less well than at the beginning of the lockdown.

2. Have you violated any of the restrictions? If yes, what rule(s) did you break?
Honestly, yes. When the no-visitors policy in care homes was lifted last May, we were expected to still keep our distance from visitors and avoid physical contact. Well, I did at first try, but I just couldn’t resist hugging my husband.

3. What viral recipes have you tried during the lockdown?
I didn’t even know that this is a thing. I haven’t really tried any new recipes, honestly.

4. What activities have you missed the most during quarantine?
At first, of course, I missed seeing my husband altogether, as it wasn’t allowed at all. Now that we’re allowed visitors again, I miss going places, like restaurants, with my husband. Restaurants are closed again for two weeks at least from tonight on, but even when they were still open, I wouldn’t take the risk.

5. Do you wear a mask when you leave the house?
Uhm, no. I don’t travel by public transportation at all or go to public places much. Until yesterday’s press conference, the government didn’t want to mandate mask-wearing except on public transportation, but only “strongly advised” it in public places like stores. As of tonight, a mask will be required in all public places and also outside of classes in secondary and tertiary education. It’s not required when going for walks outdoors. I do think that, when my mother-in-law visits tomorrow, I’m going to wear a mask to protect her, as she’s generally very careful and I’m not.

6. Are you an essential worker? If yes, what is your job title?
No. I don’t work. Thankfully, my staff are classed as essential workers and we didn’t get holiday or weekend staffing levels so far, which I was worried about at first.

7. How do you exercise during the lockdown?
I go for walks, go on the elliptical, do weight training and yoga. Basically, all my usual exercise activities. I was on the waiting list to go swimming before lockdown and had considerd going to a gym too. Swimming was canceled here at the facility and, though gyms are still open, I don’t want to take the risk.

8. Have you subscribed to any new subscription services since the lockdown started?
No. I did briefly restart my Netflix subscription, but canceled it again after a month. I much prefer reading to watching.

9. What did/does your daily schedule look like before the pandemic started?
I’m assuming the question is meant to ask how our schedules differ now that we’re in lockdown, because of course the pandemic is raging so there’s no present tense “does” before the pandemic. Anyway, before the pandemic I would go to the day center at around 9:30AM and stay there until 4PM. Now that we’re provided day activities in the home, I usually don’t start them until 10AM at least. I also take more breaks than I used to. I much prefer the current arrangement.

10. Do you think that the pandemic is getting better or worse?
Worse. It’s all pretty awful. I really hope they’ll find a vaccine soon.

11. What have you learnt/became grateful for during the lockdown?
I’ve become more appreciative in general. For example, I’m grateful for my health, my ability to still go outside for walks, being able to see my husband… lots of things!

12. How do you think the world should learn from this pandemic so that things are better in the future?
I think in general people have learned to be more health conscious. Other than that, I don’t think the pandemic taught us any big lesson or whatever. Of course, I could get all fluffy about people possibly being kinder and more grateful towards each other and the planet, but I don’t think that’s going to happen.

I’m not tagging anyone, but if you want to do this tag, feel free to.

#WeekendCoffeeShare (October 11, 2020)

Posted on by Astrid

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

Posted on by Astrid

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

If I Could Turn Back Time… #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

Negative

Posted on by Astrid

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!

#WeekendCoffeeShare (September 20, 2020)

Posted on by Astrid

It’s Sunday and I want to tell you more about my life right now. For this reason, I’m joining in with #WeekendCoffeeShare. The image above is taken on a bridge over the local channel. I’m not there right now and in fact did not go out for a walk today at all. I did drink coffee. And pure green tea – not the matcha powder type. If you want any, you can grab some. There’s also cold water in the fridge. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that it was my and my husband’s ninth wedding anniversary yesterday. I wasn’t able to visit him though, because I have a cold. At first I wasn’t sure whether just a cold means I need to stay home, but my husband sent me the COVID-19 FAQ from the health authorities that said I had to. Strangely, a staff who has a cold slightly milder than mine, was working this morning anyway.

If we were having coffee, I’d tell you that I did send my husband a card with a photo of me in it. He appreciated it.

If we were having coffee, I’d tell you that I just got interrupted while writing this post by a staff to tell me several other clients show cold symptoms. I already knew this, but it means we’re from now on being cared for in our rooms. We’ll get tested for COVID-19 as soon as possible, maybe today but I don’t think so.

If we were having coffee, I’d share that I am loving learning more about essential oils and soap making. I downloaded three books on the topic of essential oils from Bookshare yesterday. Of course, since I don’t have a microwave or stove in my room, I won’t be able to make soap while we’re still being isolated. However, I do have my essential oil diffuser and oils here, so I can make my own diffuser blends.

If we were having coffee, I would tell you that I requested my staff bring me some coffee cups so that I can make Senseo coffee in my room. I mean, staff do come here to deliver our meals and help us whenever we need it, but they do need to wear protective clothing when entering our rooms. I think that’d be a bit annoying for them if they had to bring me coffee.

What else is new? A lot really, but all seems futile now that we’re in room quarantine. For those who pray or send positive vibes, do get those prayers/healing vibes/etc. coming our way.

What have you been up to lately?