Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

Journal #SoCS

SoCS Badge 2019-2020

Journaling is one of my favorite activities. That being said, I’ve taken forever to find the right means of doing it. I tried a regular Word document, at least twenty apps on my iPhone and a couple on my PC too. In fact, at one point I spent $100 on an app that didn’t even work.

I currently use an app called Day One on my iPhone. It’s not perfect, but it’s the best I can get so far. That is, at one point there was an app called Dyrii that was better, but they went into maintenance mode and at the last update, messed things up pretty bad.

In addition to journaling, I love to collect journaling prompts. I probably have about twenty collections of journaling prompts in my various book apps and on my PC. I don’t use prompts as much as I’d like, but just the thought of having them at hand is helpful. It may be a kind of autistic perseveration, but oh well.

In Day One, I have four different journals righ tnow. One is a general journal that I rarely update. The second is specifically for my alters to journal their thoughts. The third is a prompt-based journal and the fourth is a gratitude journal.

Just yesterday, I thought of starting another one, specifically for chronicling my recovery from compulsive overeating. I also may want to start a quote-based journal. I so far decided against either of these, but Day One allows unlimited journals if you have the Premium version. Which I’ve had a couple of times but each time deactivated again. I’m pretty sure I’ll keep the Premium subscription now though.

This post was written for #SoCS, for which the prompt today is “Jour”.

My Essential Oil Container #SoCS

SoCS Badge 2019-2020

I’ve been perseverating a lot about essential oils, so when the prompt for Stream of Consciousness Saturday (#SoCS) was “Container”, I immediately thought of my box of essential oils. The box was specifically made for storing 10ml bottles of essential oils. It was built by people with intellectual disability.

I’ve had this one box for many years and stored a large amount of essential oils in it. It can store at most 30 bottles and I had it full until I weeded out some expired oils at the beginning of the week. That is, I didn’t just store essential oils in it, but also fragrance oils. I have those stored in a separate basket now.

Currently, there are eighteen oils in my container. I bought them pretty much randomly, so cannot use all of them in blends, because that would require I had other oils to go with them. However, I enjoy each and every oil.

I have been counting and calculating which oils to buy next too. I don’t have many citrus oils, because I had to throw several out that were years beyond their shelf life. I may buy some basic ones, like lemon and orange, but not sure. I will maybe also buy some spicy ones, as I love the scent of litsea (may chang), but it is usually combined with spices such as cinnamon or clove.

I also created a folder on my laptop with essential oil blends and an index of the box. After all, I cannot read the bottle labels and I cannot label each bottle in Braille (that would take up too much space). So I have them sorted alphabetically, from field mint (which translates to “akkermunt” in Dutch and which I can barely use) and anise to tea tree and ylang ylang.

What are y’all’s favorite essential oils? I’d love to know so that I can decide on which, if any, to buy next.

Choosing Love #SoCS

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that Jeroen is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love Jeroen more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my husband to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my husband anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.

I Want to Feel Better #SoCS

SoCS Badge 2019-2020

I want to feel better. Or maybe I need to feel better. No, that’s not correct. Feeling normal mentally may be a want, but I cannot need to feel it everyday.

I’ve been really in a depressed funk over the past week. Maybe, like I said on Thursday, it’s just that I was feeling so well over the past six weeks or so. Now that it’s passed, at least for now, I feel frustrated and depressed. I feel tired too. I’ve been lying in bed most of the morning and part of the afternoon today.

So what am I going to do about it? I’m writing now at least. That’s better than lying in bed. I still at least have some writing mojo left. In this sense, it helps that this writing exercise is stream of consciousness so that I don’t need to worry about structure.

What else can I do? I could be forcing myself to stay out of bed, but this is hard especially on weekends. So I’m not doing that.

I will be going for daily walks unless the staff have no time to take me on a walk all day (which is rare). Then, I will dance in my room for at least 15 minutes and/or go on the elliptical.

I will continue to write everyday. If it isn’t “blog-worthy”, so be it, but I’ll at least try.

I will meditate. It doesn’t need to be a long guided meditation or anything. A few minutes is enough. But I’ll make sure to incorporate mindfulness into my day.

Hopefully, committing to these will help me keep depression at bay. And if it doesn’t, then at least I’ll know that I’ve tried.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “want”.

Valid? #SoCS

I’m not sure I’m valid. I joined some groups for highly sensitive people and empaths on Facebook. I relate to literally almost every trait associated with being an HSP/empath. Then again, I’m also autistic and this means I don’t have the cognitive ability to know what’s expected of me in social situations.

I’ve heard there’s some theory about autistics being hyperempathetic where it comes to feeling others’ emotions but less able to know what another person needs. Something with cognitive empathy being lower than emotional empathy. Or was it the other way around? I have no idea and am too lazy to google it now.

I always feel like I want to see myself as a lot more positive than I am. I mean, some people close to me have said I even have some narcissistic traits. Some people think of me as a pretty stereotypical autistic and I’ve always felt good about that, as it validates my feelings of being different and my need for support. Empath/HSP only validates my feeling different.

Yet sometimes I feel that my seeing myself as somehow highly sensitive, is a way of obscuring my negative traits. It’s not that I don’t see them, but that I label them positively in a way. I mean, 90% of empathy traits are worded at least somewhat negatively. For example, have you been told you are “too sensitive?” Do you need alone time a lot? When a friend is distraught, do you feel it too? Heck, I sense negativity a lot, but isn’t that just me being a generally negative person?

I have a feeling that part of the reason I want to see myself as unique somehow, has to do with an external locus of control. I don’t want to see my huge flaws and instead go label them as assets or blame them on my childhood trauma.

And yet most people say I have a negative self-image. My CPN from mental health wants me to do a module of cognitive behavior therapy on helping me get a better self-image. Maybe I need to learn to see myself as just the ordinary person I am without either negative or positive stuff that make me different. After all, when I say I’m a pretty good writer, people close to me often say: “Well, about average for someone with your education.” Apparently I’m quite arrogant in this respect.

So am I allowed to feel different or is that just an excuse to set myself apart from the herd? Remember, feeling like you can only be understood by certain people, usually those with high status, is a narcissism trait in the DSM. I’m not sure. I want to feel okay about myself, but doesn’t that mean seeing my negative traits too? And seeing them as well as the positive ones for what they are: just traits? I guess I’ll learn this in the module.

I’m joining in with #SoCS, for which the prompt today is “val”.

Welcome to Another Day #SoCS

Welcome to another day. What day is it anyway? I have to check my iPhone to be sure. It’s Saturday, March 21, 2020. Here I almost wrote it’s March 20. Where does time go?

It’s the first week of whatever this self-isolation thing is called here in the Netherlands. It’s not a complete lockdown, but there’s not much we can do anyway. I went to the supermarket today, only realizing later on that if I’m allowed to go there and be relatively close to other customers, I should be allowed to see my husband too. Or is that flawed logic? I mean, no-one is really keeping the five feet distance that’s recommended.

I miss my husband. It dawned upon me last Thursday that if I do fall seriously ill with COVID-19, my husband won’t even be allowed to see me. I know, I’m in good immunological health, so I most likely will just get some nasty flulike symptoms, but still. It sucks not being able to be close to my husband.

Then a voice in my head said: “But you chose to leave him.” I didn’t leave him, as in divorce or abandon him. We’re still married and planning on staying so for life. But I did go into long-term care when I wasn’t literally dying living with him. I was struggling to keep up, but I did have food to eat and could, for the most part, get ahold of something when I was hungry.

I bought a bag of liquorice and ate it almost in one sitting today. Then I had a terrible stomachache. I don’t know why I decided to eat all the liquorice. I guess some part of me is feeling rather awful.

Yesterday, a little (inner child, for those not familiar with dissociative identity disorder) wrote to an E-mail list. I don’t know what she wrote and haven’t checked the responses.

Generally, we feel pretty calm, but I guess there are parts of me who are severely triggered by something about this COVID-19 crisis. Other parts are just bemused. It’s a strange world we live in indeed.

I’m linking up with #SoCS, for which the prompt today is “Welcome”.

Whale Sounds #SoCS

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

What a Year! #SoCS

SoCS Badge 2019-2020

What a year it’s been! It had a lot of ups and some really deep downs too. I will post a year in review sometime in the next few days, as I can’t do them in stream of consciousness form. However, today I already want to say that this year was huge. Really, I’m still struggling to grasp that my twelve-year-old wish to find a suitable care facility finally came true.

I’m not sure what else I can say about this year. I mean, the whole year has been filled with first applying for long-term care funding. Then it was denied and I had to keep quiet on my blog and social media about it, in case someone from the funding agency would find out and use my writing against me. I still wonder whether the funding people might’ve read that one blog post I wrote on June 3. It was essentially a suicide letter in disguise. I mean, yes, it was positively worded, as a letter from myself in 2021, when everything would be okay and I would be in supported housing. However, it was clear to anyone reading between the lines that I was in a very dark place. The next day, my appeal was granted and funding approved.

Then I had to wait for another two months to find out I was accepted into the place I wanted to go into. It was the second care facility we’d been checking out. The other one was closer to my old home (and is also closer to our current home), but the vacant bed had been filled up by the time my funding was approved. I had my doubts about that place already, as I heard at my day center that staffing was cut at the day center people from there went to. It would’ve been nice if I could live in that facility, at least in that it’s closer to our home, but it works out now too.

I had lost hope again by the day the care consultant for my current care facility called my support coordinator to inform her that I’d been accepted. No depressing blog posts this time though. This was August 20. On September 23, I moved in. Wow, that’s already been three months!

I feel calm now. Calmer than I’ve felt in a long time. Not just today, but in general. Of course, I still get frustrated when my computer doesn’t do what I want, when I don’t understand a social situation or when I need to clean up a mess I created and don’t know where to start. I still have very poor distress tolerance and that’s unlikely to change anytime soon. I still find that everyday life takes a lot of energy. However, emotionally speaking, I feel better. I don’t experience nearly the level of irritability I used to. More importantly though, my post-traumatic symptoms seem to have lessened. Yes, I’m still dissociative, but I don’t experience nearly the amount of flashbacks I’d experienced before.

For 2020, I really hope to be able to be more alert. That probably requires me decreasing my antipsychotic dose, which is a goal I have anyway. I want to experience the full range of emotions more. After all, now that I’m not overcome with emotional flashbacks that often anymore, I want to open up my mind to what life has to offer.

I’m linking up with #SoCS.

Key #SoCS

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.