Tanka: These Weird Times

Stay silent, listen
Hear the birds’ cheerful chirping
Hear the wind blowing
Hear the music of nature
Despite these times of crisis


I am pretty sure I already published this poem somewhere, but I can’t find it on here and I don’t post my poetry anywhere else. I found it in my Drafts app, which I sometimes use for creative writing. I originally wasn’t sure I wanted to post it to my blog and as I write this, still am not 100% sure.

It may not even be the most appropriate time for this poem. Most people are probably, understandably, tired of the pandemic and want it to end, not be at a crisis point. And honestly, I’m not sure where it is currently. I mean, I saw a headline today saying COVID is being fought well, but the virus fights back. Something like this. Let’s all hope this crisis is over with quickly.

I am using this as an attempt at working the block editor too, as on my iPhone I can of course no longer use the classic editor and the Drafts app works only with Apple devices. I was going to find a workaround, but then decided I would need to get acquainted with the block editor one day anyway. So, well… whatever.

I’m submitting this poem to dVerse’s Open Link Night.

Fight for the Light #SoCS

SoCS Badge 2019-2020

Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

A Bottle of Hope

Today, I feel stuck in the twilight zone between good and bad. I’m not feeling as hopeless as I was two weeks ago, but I can’t quite say I’m feeling happy either. I really feel numb. This seems to be the story of my life anyhow. I’ve rarely felt truly happy. Sometimes, I feel dysregulated, desperate, out of control. Some other times, I feel a glimmer of joy. That rarely lasts long. This afternoon, I experienced such a glimmer of joy when making a necklace. Then this evening, I was in a small crisis again.

Still, I have this instinct to survive, to go on. I still keep this bottle of hope that I know at some level will always be available to me. Even at times when I’m most dysregulated, I haven’t intentionally taken steps that would really end my life. I still, deep down, have this will to continue.

Now if only I could put the energy I’m putting into merely keeping hope alive, into actually practising contentment. If only I could pick up that bottle of hope from the shelf, instead of letting it sit there until I (someday, probably never) find the perfect life circumstances. Keeping hope alive is one thing, but living a life of joy and contentment, is quite a bit further up there.

This post was written for Eugi’s Weekly Prompt and Michelle’s July 1 writing prompt

Nurse Practitioner’s Appt This Afternoon

I had a brief meeting with my nurse practitioner this afternoon. Even though it was only half an hour, we discussed a lot of things. First we made concrete plans for me to start the topiramate. Like I said before, I would need to be on the injectible birth control for two weeks before I could start it. That would be next Thursday, but I proposed I won’t start with the topiramate until the Sunday after that, July 4. That way, I won’t be just starting out when I go to Lobith on July 3. This was okay with my nurse practitioner and he’d make sure the pharmacy would get it ready on time.

Next, we discussed my bloodwork results. In the part that measures metabolic health, nothing worrisome was found. I asked about my kidney function and first my nurse practitioner said that unless your estimated GFR is below 60, it’s no reason to worry yet. Mine was 81. He checked my previous lab results. My estimated GFR was 71 in 2019 and 82 in 2020, so there’s not a clear decrease either.

He also complimented me on my cholesterol level, which was completely normal. Of course, there is only so much you can do about high cholesterol, but apparently I’m doing what I need to. It probably helps that I don’t drink and try to eat a relatively healthy diet.

Then the other page showed my blood level for my antipsychotic aripiprazole and its active metabolite. These were quite high. This means that side effects may outweigh the effectivness of the medication. While I don’t experience any major side effects, we will try to lower my aripiprazole dose in the not-too-distant future. That’s been a long-time wish for me anyway.

Then we got to discuss my crisis last week and my conversations with my husband. My husband had suggested I might have dependent personality disorder and I eventually thought he was right. Of course, in my mind, this led to all kinds of additional conclusions that my husband hadn’t mentioned, like my not having trauma-related issues and my not even being autistic and my being one giant manipulator.

My nurse practitioner said that DPD rarely if ever goes alone and that he wonders whether it even is a valid diagnosis. It is according to DSM-5, of course. He added that this is one of the most negative diagnoses to give someone. My nurse practitioner obviously didn’t mean my husband, as he didn’t really try to diagnose me at all, just wanted to give me food for thought. We will further discuss my issues with dependency in the future.

Overall, it was a good appt. As my nurse practitioner hadn’t read the E-mails we (meaning my inner people) had sent him over the weekend, we didn’t go into those specifically. Those E-mails had included a lot of self-loathing and self-doubt, including about our possible DID. I did explain about the dependency issue, like I said above. He also made sure I’m no longer in actual crisis. I confirmed this. This means I no longer need more frequent contact with the mental health team than I normally have.

#WeekendCoffeeShare (June 20, 2021)

Hi everyone on this sunny and comfortably warm Sunday. I didn’t join in with #WeekendCoffeeShare last week again. In fact, I haven’t been motivated to write much at all over the past week or so. Today though, I’m trying to get out of my rut and join the Coffee Share community again. I just had my afternoon coffee and will probably take a soft drink break midway through this post. If you’d like a drink, feel free to get one and let’s catch up.

If we were having coffee, I’d share that the weather over the past week has been beautiful. It was even a little too hot for my liking on Wednesday and Thursday and the nights were uncomfortably sweaty. However, I’m liking this much more than the rain we had over the month of May. We did get some thunderstorms during the night though, which scare me.

If we were having coffee, I’d share that I went to the doctor with my lower abdominal pain that I’ve had for about a week now. I wrote about this on Tuesday, but hadn’t been to the doctor at that point. I went on Thursday and, even though the urine sample I’d sent off for checking, didn’t show an obvious UTI, I did get antibiotics just in case while the sample is being further cultured. The doctor explained that it’s unlikely I’ll develop resistant bacteria, as I hardly ever take antibiotics. I am also to take paracetamol for the pain.

If we were having coffee, I would tell you that I’ve been in a bit of a crisis over the last few days. On Thursday, while I was still in quite a bit pain, my care facility’s manager came by to inform me that I cannot get more support than I get now. I realize it may seem silly to get into a crisis over this, but I’ve been struggling with major anxiety lately and was really hoping that more support could help me.

With respect to the anxiety, my husband tried to be supportive, but I ended up being triggered by some of his words. Like, he said he thinks I might have dependent personality disorder. This was the exact diagnosis I got in the psych hospital in 2016 and which was used as an excuse to kick me out. I don’t want to be kicked out of long-term care. I guess that proves I’m just being dependent though, as like I’ve mentioned before, I wasn’t dying living with my husband.

My husband tries to encourage me to do more things independently. While really I would like to be able to, the activities he mentioned (showering, for example) give me a ton of overload even now that my staff help me. Then again, who knows this isn’t just anxiety and dependency either? Apparently I’m not able, in my screwed mind, to make that judgment myself.

If we were having coffee, I’d share that I’m almost certainly going to start taking the topiramate in early July. I started the depo-Provera injectible birth control last Thursday and I will be able to start the topiramate once I’ve been on this one for two weeks. Now I’m only hoping the antibiotic won’t mess things up again.

If we were having coffee, lastly I would share that today, my one-on-one staff took me to visit her family’s horses. I loved petting the horses. One of them kept reaching for my lower abdomen. The family member whose horses these were, explained that she goes for the person’s body part with the most tension. I guess she’s right.

How have you been?

Powerful

My Braille display, which I use to access my computer and smartphone as I am blind, is giving me problems again. In fact, it’s been acting up ever since only a few days after it got fixed three weeks ago, but I hadn’t wanted to disclose this on my blog. After all, the Braille display costs several thousands of euros and the company had originally claimed that home contents insurance (which I don’t have at this point) should pay for the repair, so I had been wanting to keep this private while investigating my options. Now though, the thing has been acting up so badly that it caused me to spiral into a parasuicidal crisis. This may seem odd, technology being so powerful as to get me to lose my sanity. Thankfully, my husband calmed me down!


This post was written for Six Sentence Story Thursday, for which the prompt today was “Powerful”. It was also inspired by Abbie’s contribution to the blog hop.

#WeekendCoffeeShare (May 23, 2021)

Hi everyone on this rainy Pentecost! Today I am joining #WeekendCoffeeShare once again. Let’s have a drink and let’s catch up.

If we were having coffee, I would share that the weather is still quite gloomy here. Like I said above, it’s been raining most of the day. It’s also pretty cold. Man, I can’t wait for summer to start!

If we were having coffee, I would tell you that this week was rather emotionally draining. On Tuesday, I found out that I won’t be able to start my new medication until at least this coming week. My care facility’s physician will be back from vacation on Tuesday and should be asked to look into the topiramate then. With some luck, I will be able to start taking it later that week.

Due to the disappointment about this and due to other triggers, I was intensely dysregulated Tuesday evening. Same yesterday. Thankfully, during the rest of the week, I have been able to stay at least out of crisis.

If we were having coffee, I would share that I’m contemplating seeking a re-assessment and possible therapy for what I think may be dissociation. I mean, I’m still unsure whether I’m making the alters up or not. Of course, on some level, I made them up regardless of whether I’ll be diagnosable with a dissociative disorder or not. What I mean though, is I’m not sure whether they are trauma-based or some result of escapism. I’m not even sure my “trauma” is real. I mean, of course it was real, but maybe it wasn’t as bad as I feel it was, or shouldn’t be affecting me as much.

I E-mailed my nurse practitioner about this on Thursday and am hoping to discuss it at our next appt.

If we were having coffee, I would share that I went to McDonald’s for lunch on Friday. I had a crispy chicken burger and fries. It was delicious!

If we were having coffee, I’d share that I was touched to the core by today’s edition of Hour of Power NL. Bobby Schuller’s sermon was on the Biblically-originating saying “Your days are numbered”. It really got me inspired to try to make a regular habit of Bible study and prayer again. I mean, I’ve so far lost only one day in the YouVersion app, two weeks ago, over the past five months. However, I notice that I’m not taking the Bible as seriously as I should and would like to.

If we were having coffee, lastly I’d share that my husband would’ve come to visit me this weekend, but he has a headache. I hope it’s gone soon. Tomorrow is a holiday too so he can come then if he feels better.

How have you been?

#WeekendCoffeeShare (April 18, 2021)

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

#WeekendCoffeeShare (April 11, 2021)

Hi everyone on this cloudy and slightly rainy Sunday evening. I’m rather late writing my #WeekendCoffeeShare post this week. I’m having a rather hard time planning when to write, as I cannot concentrate on it when my one-on-one staff is with me and yet struggle to feel well enough to write when alone. I just finished my dinner, so no coffee for me as of yet (though with my parents, coffee after dinner was a ritual). If you’d like a Senseo though, I can make you one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was rather bad weather-wise. It’s been raining all week. On Monday and Tuesday, it even snowed a bit. It’s been near freezing cold too. How is your weather?

If we were having coffee, I’d share that this week, the physical therapist and orthopedic shoemaker came by to discuss my getting semi-orthopedic shoes. My current, store-bought shoes aren’t great for fitting my AFO in. They also have laces, which I can’t tie myself. I’ll hopefully hear next week what models they have available. I did try on a pair already, but this was just to get an idea of what I’d need.

Thankfully, the shoes will be fully covered by long-term care. This did lead to a bit of self-loathing, in that I feel like a burden for costing so much with my one-on-one, the weighted blanket and all the other costs and now this. I try to calm myself by thinking it wasn’t really my decision. Besides, I will most likely experience less pain when walking and be able to walk longer distances. Still, I can hear my inner critic say that I fake my mild cerebral palsy.

If we were having coffee, I’d share that, last Friday, I was in a crisis. I don’t even know what led to me starting to feel triggered. At some point though, I left my room at night. On my way to wherever, I bumped into something and swore. Then I decided I’m unforgivable anyway now and decided to self-harm. I’m okay physical wound-wise and the night staff eventually calmed me down. Still, I have been feeling really unsettled all weekend.

If we were having coffee, lastly I’d share how proud I am of myself for continuing to blog each day and sometimes more than once. Of course, I’m busy with the #AtoZChallenge, but I also managed several other blog posts. That’s pretty awesome if you ask me.

How has your week been?

#WeekendCoffeeShare (February 21, 2021)

Happy Sunday everyone! I’m rather late joining in with this week’s #WeekendCoffeeShare, but better late than never I’d say. In addition to coffee, today we have two types of soft drinks in the fridge, both partly lemon-flavored and neither of which I like. If you’d prefer cold water, I totally get you. Unfortunately, the water hasn’t been in the fridge that long yet, so it’s not super cold. I hope you enjoy whichever drink you choose anyway. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d ask about your weather. Is yours as crazy as ours? Last week, remember, we had snow and temperatures below freezing. Now, the weather is really spring-like, with the temperature having risen to 17°C here in Raalte and to 19°C in some places in the south of the country. Tomorrow we might get even warmer weather.

If we were having coffee, I’d share I went to Lobith for the week-end. My husband and I got Domino’s pizza yesterday. The one I got, curry kebab, was good, but not as great as I’d expected.

On the way back to Raalte, my husband had a radio station on playing summer hits to celebrate the warm weather. I now have the Venga Boys’ Boom, Boom, Boom stuck in my head and I actually don’t mind. I don’t think anyone who isn’t a child of the nineties can truly appreciate the beauty of this music. 🤣

If we were having coffee, I’d share that I still don’t feel back to my normal self. My magnesium, which I started last week for constipation, has been upped. I’m struggling to decide whether this was a good thing or not. Guess I’ll give it a few more days to see how I do.

I’m also still pretty fatigued and easily overloaded. On Thursday, I landed in a minor crisis due to it. Unfortunately, my community psychiatric nurse didn’t work that day and the substitute couldn’t help me much at all. He offered to ask my CPN to call back on Friday, but I think she may not have received the memo. By then though, I was feeling somewhat more functional.

If we were having coffee, I would tell you that a fellow client and staff cooked spaghetti for us today. It was good.

If we were having coffee, lastly I’d share that I made a lip scrub with my one-on-one staff this evening. I used coconut oil, sugar and vanilla extract. Unfortunately, it didn’t turn out to be the consistency I liked. However, it did make my lips feel soft.

What’s been going on in your life?