A Productive Tuesday

Hi all, how are you doing? I didn’t write at all yesterday. That is, I wrote a lot in my new private journal. I finally got a subscription to the premium plan of Day One. Day One is an iPhone (and Mac) app for journaling. I discovered how to work it last April. Okay, I’ve had this app for years, but I didn’t know how to insert links, headings, etc. until then. However, even as I found out, I didn’t write a lot. I now do plan on writing in there everyday and have set a reminder to do so. I have three journals: one general one, one for chronicling my journey living as a multiple, and one for prompt-based journaling. I may copy some of those here, but the one I did today, isn’t really suited for this blog.

I also started reading fostering memoirs again. I bought Who Will Love Me Now? by Maggie Hartley. I’m loving it so far, although it’s a sad story.

I also got the littles a little picture book about emotions. I got that one off Bookshare. It’s called ABC of Feelings. I also still have a lot of free bedtime stories in my Apple Books and Kindle libraries.

This morning, I made yet another keychain. It’s for the friend at the other home that’s part of my facility I’ve mentioned before. She regularly gives me cards and, since she has a birthday in August, I thought I’d make her something.

This evening, I talked to a staff who doesn’t work here often. She told me she likes crocheting and I asked her to teach me. We did a little crocheting, but that didn’t really work for me. I then remembered I had a knitting loom too and we tried some loom knitting. I didn’t get far, but I got the first couple rounds done. She may bring a metal loom knitting needle tomorrow, as the one that came with the loom is made of plastic.

We also had a cooking activity this morning, but I didn’t participate in that. A staff made us noodles with chicken and veg. I loved it!

Oh, and I did go for three walks today. They weren’t very long walks, but it was good being outside.

Overall, the day has been relatively productive. I didn’t feel this way at first, because I didn’t feel inspired to blog. However, now that I got to write down all that I did, it’s quite a lot.

#WeekendCoffeeShare (July 26, 2020)

Hi all on this summerly late Sunday evening – or should I say early night, as it’s actually past my bedtime right now? I’m still wide awake though, so thought I’d join in with #WeekendCoffeeShare. It’s too late for me to grab a coffee, but if you’d like one, I can make you one.

If we were having coffee, I would share that we were supposed to get heavy rain here today. We got some light rain in the morning and did get rain at night, but overall, it’s been a pretty rain-free day. I got to take an evening walk at 9PM. That suited the staff, as most other clients are in bed by then.

If we were having coffee, of course I’d share that I got approved for a higher care profile last Thursday. This means that the facility gets more money for me and they might be able to get some extra staff hours in. I found the letter detailing the decision in my government inbox on Friday. It was a bit hard to read how challenging my behavior really is. This care profile is called “living with very intensive support and very intensive care” and is the highest care profile for people with visual impairment.

If we were having coffee, I would tell you I made another keychain, this one for my husband. I like this one more than I do the one I did for my sister-in-law. My staff got the heart-shaped keyrings at a budget store.

If we were having coffee, I would tell you that after Tuesday’s appt with my nurse practitioner, I’ve been feeling at the same time more out of sorts and more feisty than ever. I do know there’s a great risk that, if I get assessed for trauma-related symptoms, the assessor will deny I have them because I’m too open about my trauma. However, a lot of people in dissociative disorder groups have been validating my experience. Of course, I’ll need a diagnosis of at least (C-)PTSD to get treatment and the prejudices among professionals suck in this respect. However, I’m feeling more and more that I may’ve found a community I belong to and find that I can access support from them.

If we were having coffee, I would tell you that I’m feeling similarly about my body and food. I mean, I at once feel very disorganized and disordered, and at the same time I’m trying to do something about it. Not that it’s any more than just trying at this point. I mean, I just noticed how my jeans fit a little better around my waistline, and that’s not a good thing, as they were rather loose. This upsets me, but it’s quite a challenge getting all of me to agree on how to change it.

If we were having coffee, lastly I would share that this week-end wasn’t quite the healthy food week-end. On Friday, we had French fries and snacks and ice cream for dessert. I also ate a whole bag of sweet liquorice between Thursday and Saturday. That though is a win, in that I’d normally have eaten it all in one sitting. I guess I’ll need to dialogue with myselves to get us on the same page re healthier living.

How have you been?

Yet Another Night-Time Crisis

Honestly, I don’t know why I want to share this. It’s late Monday evening here and I’m feeling okay’ish. Tomorrow, I’ll have another meeting with my CPN and nurse practitioner to discuss my treatment. This got us worrying a lot last night, so much so that we ended up in crisis.

As I probably said a few weeks ago, my nurse practitioner wants me to try acceptance and commitment therapy. This wasn’t what we’d expected at all and honestly I still don’t understand how he thinks it’s a good fit for my issues. I mean, it’s evidence-based for depression, anxiety and OCD, none of which we deal with to a significant degree.

He was also pretty dismissive of my trauma-related symptoms. Obviously he doesn’t believe we’re plural. Fine by me, though not by some of the others. But somehhow he seemed not to believe I suffer with any type of trauma-related condition at all. At least, he didn’t feel that trauma treatment could or should help us.

This got us worrying last night, as we really have no idea how to advocate for ourself without coming across like a malingerer. It got so bad that we ended up impulsively leaving our room.

After our last case of elopement, the staff decided to lock the door to our home, so I couldn’t go outside. The night staff though hadn’t come to my room to check on me yet. It was 11:10PM. The night shift normally starts at 10:30. Eventually, a substitute night staff came by, saying he had to do one-on-one with another client, that the real night staff was delayed and he was really busy so could I please go back to my room? That upset us greatly, so even though we went back to our room as requested, some of us started self-harming.

About twenty minutes later, the real night staff came to check on us. We were upset, so told her to leave. She left and we cried and self-harmed some more because we were still very upset. Our signaling plan says staff are to stay with us if we’re upset even if we tell them to leave, but I don’t know whether the night staff have access to this plan.

Finally, we left our room again and waited, still panicked, for the night staff to be alerted and to come check on us. She was distraught at seeing us so upset. It makes me feel shame and guilt for making her feel this way. She got us a PRN lorazepam, which calmed us slightly. Still, we didn’t sleep till 2AM.

Now I’m feeling okay again, but I’m still not sure what to do with tomorrow’s appt. I mean, after each crisis, my mental health team say I somehow managed to get out of it. They probably mean it as a compliment, but it doesn’t feel that way. Today, I didn’t even care to call the mental health team. I’m still shifting between wanting to give up mental health treatment altogether and demanding trauma therapy. After all, the reason the appt upset me so much is that it triggered my feelings of being unseen, unheard, unsupported. Then again, maybe we’re not worth being seen, heard or supported.

#WeekendCoffeeShare (July 19, 2020)

Hi everyone on this sunny Sunday evening. It isn’t hot or too sunny here, but the sun does shine and it’s warm. Around 22 degrees Celsius. I like it. Today, I’m joining in with #WeekendCoffeeShare. Grab a cup of coffee, tea or your favorite soda. I think the staff also put some water in the fridge to be cool. Let’s catch up.

If we were having coffee, I would share that the week started off rather rough. Like I wrote on Monday, I was feeling rather overwhelmed. Thankfully, as the week progressed, my mood and general wellbeing got a little better. I still experience some level of pain on a daily basis. Not 100% sure why, but at least right now it’s manageable.

If we were having coffee, I would tell you about the physical therapy appt I had on Wednesday. The physical therapist noticed I was pretty tense all over. She might give me some exercises and is going to massage my back next week. She also put tape on the inside of my knee, because I overextend it. I have known I do this for nearly 20 years, but thankfully it didn’t cause significant pain until recently.

If we were having coffee, I would tell you about all the beautiful jewelry-making supplies I received in the mail yesterday. I had ordered them from a children’s craft supplies store that I didn’t know before. When the things got shipped and yet I didn’t receive them the next day, I checked and it turned out they had to come from England or something. As such, it surprised me that they did get here on Saturday. The best part is a collection of 90 silver-colored charms. They are truly beautiful.

If we were having coffee, I would share that my husband took me to our home for a night yesterday. We got takeout pizza at my favorite pizza chain. I think my husband entered my E-mail address, because I got a lot of advertising in my inbox today. That’s no problem though.

If we were having coffee, lastly, I would tell you excitedly that I rediscovered at least part of my gemstone collection. I had been wanting to order new gemstones about a week ago and had been thinking or had dreamt that I’d left my collection at the student apartment when I moved out of there in 2010. Turns out my husband has two of the four boxes I had at our home. I guess the other two are either at my parents’ or indeed gone.

I loved telling my husband about all the gemstones in the collection. Sadly, I forgot to take pictures and didn’t take the collection with me to the care facility. I might select some stones to bring here.

How have you been?

Tuesday, July 14

Hi all on this rainy Tuesday evening. Here in the Netherlands at least, the summer is hardly a summer to be honest. What a contrast with last year!

I’m feeling uninspired today, but I do want to write. I hope yesterday’s post didn’t just attract the engagement because I predicted it wouldn’t. Regardless, I think I like the ability to ramble.

I started jewelry-making back up again last week. It’s still pretty hard and frustrating. I mean, I have to gather the right supplies and I keep forgetting something. Last week, I ordered wire, but it was too thick for the thinnest needle and yet the beads wouldn’t fit over the slightly thicker needle. I as a result managed to make only one simple bracelet so far.

Today I ordered some additional supplies, but I forgot to order clasps. My husband asked me to make a bracelet or necklace for his sister, who had her birthday last week. Not that she wears a lot of jewelry, but he thought it might be a kind gesture. I ordered some heart with dog paws pendants, because she loves dogs. Here’s hoping I can make something decent-looking with the supplies I have at hand right now.

In other news, I got a haircut on Thursday. My hair is quite a bit shorter than it was before. I like its current length though. It’s kind of wavy now and feels a bit tougher when brushing through it with my fingers. Since that’s one of my main stims and I like the feel, I think I may keep my hair at this length. My husband has so far only seen the picture, as he didn’t visit last week-end. I will be going to our house this coming
Saturday though.

Today despite the rain I managed three walks. Not long walks, but long enough. I also did a short yoga practice. I just googled yoga for beginners and selected a YouTube video. I didn’t complete the full practice, but I managed to do some. My day activities staff helped me by explaining what the woman in the video was doing. I liked it.

I also listened to some women’s magazine on audio. It was a nice way of unwinding.

I didn’t rest as much as I had originally planned to, but still I feel okay. It’s now nearly 9PM and, though I’m physically tired, I’m not as overwhelmed as I was yesterday.

Hope you all are doing well.

I Am Overwhelmed

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.

We Ordered Some Beads

I’m feeling pretty uninspired to write today. I’m still feeling upset about last Friday’s meeting with the nurse practitioner. I mean, I don’t want to claim to have a dissociative disorder, even though on this blog I do sort of claim this. At least, we claim to be multiple. I’m not sure we fully are, but we’re definitely not fully singlet either.

We sent an E-mail to my assigned support worker explaining our issues with the nurse practitioner’s comments. She might forward it to my other staff and maybe the behavior specialist too. The behavior specialist replied to her E-mail from last Friday that I could ask my nurse practitioner why he thinks ACT is proper therapy for me and why he doesn’t want me to do EMDR. Some of us were pretty upset at her reply too.

Today we were upset at not being able to do much with respect to day activities. It rained all day, so we could only take one walk. Other than that, we sat in the living room or in my room. At the end of the day, our crafty part came up with some ideas. We might try making some bead jewelry. It doesn’t have to be professional-looking, but it could be cool.

So I ordered some beads at a store called Creadream. I originally intended on ordering glass beads, but ended up going with plastic ones. They were cheaper and the store had a larger variety of shapes. I got some round beads, some cubes, some rectangles and even some butterflies. Some of the purple ones were on a discounted price, so only like €0.66 for 25 grams (about 45 beads I think it said).

I also ordered some wire and elastic, including memory wire. This is a type of metallic wire that is shaped like a coil that fits around your arm. It can be used for making bracelets. I forgot to order pliers to cut and bend the wire with, but I or my day activities staff might be able to find some later. I also forgot to order a beading needle.

I think the littles will definitely enjoy working with all the different shapes and colors. Of course, we can’t see the colors, but we have some memory of what they look like. We ordered mostly purple ones, like I said, but also some pink, green and I can’t remember what else.

Now I constantly feel shame when I refer to the littles or write in first person plural or the like. I know I can’t fully be myself with mental health professionals, because they aren’t my friends, but why can’t I be myselves on here? My CPN knows the address to this blog and has occasionally read it, but yeah.

#WeekendCoffeeShare (July 5, 2020)

Hello all and a happy Sunday evening! Today I’m joining in with #WeekendCoffeeShare. I honestly crave a cup of strong coffee right now, as I’ve only had one cup so far today and it’s past 6PM. Unfortunately, I think all I can get now is decaf. Anyway, how have you been? Grab a cup of decaf, tea or your favorite type of soda and let’s catch up.

If we were having coffee, I would rant about the meeting I had with my nurse practitioner and community psychiatric nurse last Friday. I was very worried about this meeting beforehand. It didn’t go as I expected at all, but that wasn’t a good thing.

The reason we had the meeting was to decide whether I can get trauma treatment, such as EMDR. I voiced my fear that, if I tried EMDR or the like, my parts would come forward and sabotage the therapy. Instead of reassuring me or even asking further questions, my nurse practitioner said he doesn’t believe I have alters because he’s to his knowledge always seen Astrid. He added that everyone has different sides to themself.

For whatever reason, the whole EMDR/trauma therapy thing went out the window too. He wants me to do acceptance and commitment therapy (ACT). He recently trained in this and it seems this is more of a reason for him to want a guinea pig than that he genuinely thinks it’d suit my symptoms. My husband joked that it’s almost like, if I go to the hospital with a broken leg and the orthopedic surgeon isn’t on call, they’d send an oncologist to give me chemo.

If we were having coffee, I would tell you that after the meeting, my staff and I went to get fries at a snackbar. We also drove by a store to get me a large bag of sweets. I had originally intended to get cold tea too. Oh, I forgot to offer you all some of that. It’s basically herbal tea that you put into cold water and then let sit for ten minutes. It’s good.

If we were having coffee, I would also tell you that I spent a night at my husband’s yesterday. It was good. We had roti delivered for dinner.

If we were having coffee, I would tell you that despite the not-so-great weather, I did go for a walk today once I got back to the care facility. There’s a new staff who’s being trained to work on my unit and she took me for a walk. Unfortunately, it seems as though my Fitbit battery won’t charge. Maybe it’s time for a new one.

How have you been?

Not Quite a (Traumagenic) System?

I feel so awful right now. The visit from my parents went so well and this is actually confusing me. I mean, I consider some of my childhood experiences traumatic. Quite a few, in fact. How can this be the case if I have such loving parents? I mean, yes, they’re still a bit odd. My father just talked about the birds and butterflies and flowers we encountered. He didn’t ask me any questions or share anything about himself. That doesn’t make him a CPTSD-engendering parent though.

I had a dream yesterday about me needing to take the SCID-D assessment for dissociative disorders and it came back showing that I don’t have a dissociative disorder. It was probably triggered by my having read a message in a DID support group about how plurality is now something anyone can claim because of endogenic (born multiple) systems etc. We’re not an endogenic system, but can we claim to be traumagenic? Can we even claim to be a system at all?

I mean, other than online and to a few specific people who know us closely, we don’t share our names. It could just be that I gave names to different emotions or aspects of myself that I find hard to understand. This is what my community psychiatric nurse said on our last appointment. She said the consultant recommending EMDR for my traumatic experiences hadn’t recommended any type of “deep-digging” therapy. Not that I want that, but on some deep level (no pun intended), her claim that my parts are feelings, made me feel invalidated.

I told my CPN that, whichever treatment approach I try, my parts always show up and disrupt the process. She countered that we hadn’t tried EMDR yet. I know, but this approach is known to cause worsening of dissociation in those with dissociative disorders. Can it get me to “split” even more, even if I’m not a genuine multiple in the first place?

When I shared my doubts/denial on an E-mail list for DID, someone replied that I sign my E-mails with lots of different names. Well, that’s as easy as typing on a keyboard. No-one needs to have any special characteristics to be able to do this. It doesn’t prove my multiplicity. Besides, I know there are parts and they have names, but are these parts truly differentiated enough?

In a sense, it doesn’t matter. I’m not planning on seeking a DID/OSDD diagnosis anytime soon and by the time I might have overcome my fear of psychological evaluations, I guess DID has been removed from the DSM. Either that or Onno van der Hart and other scandalous therapists have given it such a bad name that no-one in the whole country will support me. And that’s even assuming that said assessment would show some type of dissociative disorder. Then again, if I’m claiming plurality for the sake of it, am I not contributing to the stigma surrounding DID myself?

In addition to the dream I had yesterday, I have recurring dreams about my parents finding out I’m in childhood trauma survivor support groups. They always confront me and my husband always sides with them. I guess I should leave those groups in case it really happens. I mean, I’m not an adult child of normal parents, maybe, but then again who is?

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?