Gratitude List (August 7, 2020) #TToT

Happy Friday everyone! I still have a lot I want to write about, but it’s soaring hot here and my brain is melting. For this reason, I’m going with a relatively simple post and do a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. Barbecues. My husband bought a mini barbecue last week and we had sausages on it on Saturday. To get some healthy food in us too, my husband served us both a full plate of cherry tomatoes. That was funny.

2. Ice cream. Lots of ice cream! Like I think I said last week, the freezer was still full of ice cream from my birthday and the previous time it was hot. Well, my staff bought even more and so we had ice cream for dessert or as an afternoon treat several days this past week.

3. New shoes. I ordered new walking boots on Monday and they arrived on Wednesday. They are a size bigger than the ones I had before, as those didn’t fit well anymore with my feet swelling. These are pretty cool.

4. Getting motivated to walk again. I signed up for Steptember, a sponsored walking/movement event in support of the cerebral palsy community. At first I wasn’t sure whether to sign up, as I can’t make it to 10K steps every single day of the event. However, my husband encouraged me. I can’t wait to start walking a lot again. Not now though, as it’s incredibly hot, like I said. By the way, I’m not sure there’s an English-language site where you can donate.

5. Liquorice. I bought a bag yesterday and had some tonight. Yes, I still had it unopened by then. Okay, full disclosure, I did also buy a bar of white chocolate and did eat that one, but oh well. Oh, how I loved the black liquorice!

6. Reading time. I actually finished a book this week that I’d started a long time ago. I loved sitting up late at night reading, as it was too hot to sleep.

7. My staff. I was feeling very much on edge for the first few days of the week. On Wednesday, I even had to take a lorazepam again to calm me down. However, all through it, my staff were so very supportive.

8. All the lovely comments I get on here. You all are so special. I’m also so happy to be motivated for writing a lot again this time around.

That’s it for now I guess. What are you grateful for?

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?

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.

#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?

#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?

Five Things I Enjoyed During Lockdown #5Things

Today I’m joining in with the Five Things Challenge, for which the topic this week is things we enjoyed during lockdown.

Now I must say we had an “intelligent” lockddown here. Most businesses were closed, as were schools and restaurants. Many people still weren’t taking it seriously. After a week of school and business closures, on March 23, the prime minister announced stricter enforcement of the stay-at-home order. That’s when he invented the term “intelligent lockdown”. The care facility implemented a no-visitors policy after this. Still, there were no curfews or rigid restrictions on where or when you could be outside. As such, my list may be a little different from that of those who experienced a complete lockdown. Here goes.

1. Walking. Like I said, we didn’t have a curfew. Still, according to Fitbit, in the Netherlands too steps taken dropped significantly during lockdown. I, however, was able to increase my steps a lot.

2. Blogging. It’s great that the #AtoZChallenge was in April, in the midst of lockdown. I truly enjoyed blogging almost everyday during the strictest stay-at-home orders.

3. Reading. Similarly, suddenly I had time to read. Not only did I not go visit my husband or need to fulfill other obligations, but the day center was (and still is) closed. At the day center, I occasionally tried to read, but the noise was just too much. As a result, I had much more time to read. I don’t think I finished any of the books on my lockdown TBR list, but that’s probably because I’m a mood reader.

4. Saving money. Okay, that’s not something I did, but it did happen. I didn’t go out to dinner or have to buy transportation tickets to go to my husband. I didn’t get my hair done, which was really okay as I hate getting it done. In the end, I ended up saving some money. Then I bought my iPhone, of course.

5. Snacking. In the early weeks of lockdown, I was using the added stressor as an excuse to snack on candy and cookies and basically anything. Magically, I more or less maintained my weight throughout the lockdown. I’m due to get weighed in tomorrow again.

What were the positives of the lockdown for you?

Lovin’ Lately (June 19, 2020)

Hi everyone and welcome to another edition of Lovin’ Lately, in which I share all the things I’ve been loving recently. I’m joining in with Friday Favorites.

Today was a pretty busy day. It was the Friday we have day activities (every other Friday is a day off). As such, I’ve been pretty active. This is why I didn’t sit down to write until now that it’s past 10PM. With no further ado, let me start.

1. Netflix. Last Saturday, in an impulse, I decided to get a Netflix subscription again. I always get the basic one, as I, being blind, don’t need HD video or multiple screens to watch on. I wanted to see the Netflix original documentary series Diagnosis. This is really fascinating!

2. My yoga mat. My husband brought it to me last week and I finally unfolded it this evening to get some working out done. I tried several yoga apps, but haven’t found one that I like yet. Then again, I love doing yoga just the way I like it. I mean, I’m pretty inflexible and don’t have much strength in my muscles at all, but if I don’t practise, it will remain this way. I tried a beginner’s yoga class with the app Down Dog, but couldn’t follow it without being able to see the video. Still, I loved the feel of working out.

3. Journaling prompt collections. I’ve probably mentioned half a dozen times already that I love to collect books of writing prompts, particularly those geared towards journaling. This week, I got a few good ones. The Goddess Journaling Workbook by Beatrix Minerva Linden is great. I already worked on some of the prompts over the past few days, as you can see. I however also love The Year of You by Hannah Braime.

4. A stuffed pillow. I got to borrow one from another client here at the care facility earlier this week and was totally in love with it. I kept stroking its soft side as I dozed off to sleep.

5. My Fitbit. This is by no means a new product, but I just want to mention it as a way to celebrate the huge step achievement I reached this week. So far this week, I got over 56K steps. This includes a short elliptical workout this evening. My Fitbit doesn’t count the yoga workout.

What products have you been lovin’ lately?

Gratitude List (June 12, 2020) #TToT

It’s Friday again. I’m still feeling pretty off. I have a lot on my mind, but rather than dwelling on it, I’m going to write a gratitude list. I’m joining in with Ten Things of Thankful (#TToT) again.

1. Bookshare. This is a service that provides accessible eBooks to people with print disabilities. It costs $50 per year and my husband just renewed my subscription. I love it! Not all books are available internationally, but enough are that I enjoy the service.

2. Smoothies. A staff gave me a smoothie maker on Monday. I already had a blender, but this one is a bit smaller and comes with its own screw-on drinking bottles. I have been loving making my own smoothies! Particularly, I loved one with apple, cinnamon, almond milk and oatmeal.

3. Tacos. Or Tortillas or whatever these particular ones are called. We made those at day activities yesterday. We filled them with lettuce, chicken and pesto. My husband commented that pesto isn’t supposed to go on a wrap, but whatever.

4. Crafting a bit. The same staff who brought the smoothie maker, came again today and did some crafting with me and another client. We made some type of cards for a staff who earned her carer diploma recently.

5. Lots of steps again. I reached 10K steps each day this week except for today.

6. My former support coordinator. I texted her yesterday, half assuming she had deleted my contact info and wasn’t sure who I was anymore. Not so though. She offered to call me and we spoke for a bit.

7. My current staff. They are absolutely taking my care needs seriously. One thing I found out through my former support coordinator is that they’re considering applying for a higher care profile for me. This has me feel all sorts of things that I can’t describe on my blog in case someone from the funding authorities reads it. Particularly, I was scared this would mean a whole new long-term care assessmment, which would mean a risk of losing my care. My support staff did reassure me though.

8. My community psychiatric nurse. I tried to call her through the mental health agency’s secretary this afternoon, but the secretary had their automated lunch-break message on long past 1PM. I E-mailed my CPN and thankfully she got from my message that I wanted a call despite my not actually having asked her for one. She helped me process some of my feelings.

This is it for now. What are you grateful for?