Dream Small

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

Right to Health

In his daily prompt yesterday, Scott Andrew Bailey asks us about the “right to health”. I purposefully put that between quote marks, as obviously no-one has a right to health. We all get sick and die eventually. Okay, that was my autistic brain’s literal thinking acting up again. What Scott means is the right to medical care.

Scott asks whether medical care is something the government should provide for the people or whether it’s best left to the private sector. Are there drawbacks to your choice?

The answer to that last question is, of course, yes. Any system has its drawbacks. My answer to the first question, on the other hand, is: I’d like it to be a little of both. For my Dutch readers, the answer can be short: I like my own system best, despite its drawbacks, such as the mandatory copay and the diagnosis-treatment combinations which dictate that you’ll get care based on a diagnosis, not your needs. Those were a particularly problematic thing in mental health. I believe they’ve been altered to something else this year, but I don’t know whether it’s better or worse.

For my international readers, here is a little explanation of how the Dutch system works and why it has the best of private and public healthcare combined. Basically, what is called basic health insurance is more or less public, even though it is covered through the same insurers that will cover your additional insurance should you get it and the insurance companies are private. The government decides which care is covered under basic insurance and insurers must accept every Dutch resident for this package, regardless of health status. The basic package covers visits to your GP, hospital care, most medications, specialist mental health services (ie. services for people with more severe mental health problems), etc. Things that are not covered include physical therapy, dentistry for adults over 22 I believe, contraception (even though Christian parties have been demanding it gets put into the package to prevent women needing abortions), etc. When I lived with my husband, I had mostly just the basic package (I did have some physio coverage but didn’t use that) and I didn’t have to pay a lot of extra money for things that weren’t covered.

You can decide to get additional coverage for things like dental care, physical therapy, alternative medicine, etc. However, insurers can refuse you for those. They usually don’t for the cheaper packages, but then again getting these hardly outweighs the cost of paying for care out-of-pocket.

Basic health insurance currently costs about €133 a month if you want to have free choice of healthcare providers (I do). You can opt for a cheaper policy where the insurer has contracts with only certain providers and you have to pay 30% of treatment costs if you go to an uncontracted provider. Like I said, there’s a mandatory copay of €385 a year on your healthcare. GP visits do not count towards this.

Like I said, I think our system has the best of both public and private worlds. Before the current system was put in place, low to medium income people were covered under the sick fund, which was similar to the UK’s NHS, including its problems of extreme waiting lists and bureaucracy. People with higher incomes would need to get private insurance, but I don’t think it was much better for them, in the sense that those with private insurance would be treated favorably. That’s a good thing.

A note about those who cannot afford to pay for health insurance at all: as a general rule, basic insurance is mandatory and there are several ways in which the government aids low-income people, but ultimately if a person doesn’t pay at all, insurers have the ability to stop insuring them. In that case, hospitals can refuse care, but not in acutely life-threatening circumstances such as when someone has a heart attack. In that sense, you have a right not to die on the health system, but not an ultimate right to medical care.

Most Relaxed When I Am Slightly Distressed?

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

Independence

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.