Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

#WeekendCoffeeShare (September 7, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s 7:40PM as I start writing my post, so like most times, I’ve had my last cup of coffee for the day. I will have a glass of my favorite soft drink in about half an hour and after that it’s just water, or maybe a cup of bedtime tea. However, I’d love for you to join me for a virtual cup of coffee. Let’s get into my post.

If we were having coffee, first I’d rave about the weather. After all, if you know me, you know that in my opinion summer is the best season. It’s September, but the weather is still summer-like. During most of the week, we had daytime highs above 25°C. Tomorrow, it’s supposed to cool off slightly and after that, sometime next week the temps are supposed to drop to 15°C.

If we were having coffee, I’d tell you that I got in a lot of exercise minutes over the past week, mostly walking. I’m doing a challenge with my spouse on our Apple Watches that lasts up till this Monday and so far, I’m doing much better. I had expected to be slightly better because my spouse is a truck driver, but then again we have the same movement goal even though I’m shorter and as a result lighter than my spouse, which means I burn off fewer calories with the same activity.

If we were having coffee, I’d share that I had my second play therapy session on Wednesday. The first was a bit of a disappointment, because as soon as she saw my staff, the therapist started saying I could come alone next time. I felt mostly disappointed about the fact that she hadn’t asked me or my staff why I need a staff to attend our sessions. When I explained this at this week’s session, she was totally cool with it.

We mostly played with PlayMobil®, which was really intriguing. I did overshare a bit this week, which I later regretted. It feels really challenging to set healthy boundaries, which is one of my goals that I told the therapist about.

If we were having coffee, I’d share that I spoke with my support coordinator again today. On Monday I had a meeting with her and the behavior specialist. One of the things I’d asked to be implemented as soon as possible, is the agreement that staff won’t unlock the door for me when I’m in crisis and will, if necessary, physically prevent me from leaving the home. I had since wondered where the agreement that the door be unlocked came from. I looked at my support agreements, but there was nothing. Today, my support coordinator looked all through my file and couldn’t find the agreement either. This frustrates me, as honestly I have no idea who came up with it. It wouldn’t have been as frustrating, had this not been interpreted as a rule by literally all staff, even staff who hadn’t previously let me out the door. I mean, on Thursday I said I was leaving in an agitated tone and immediately the staff said she’d unlock the door for me. It frustrates me to no end that staff are making rules that they don’t write down and that, as a result, can’t be discussed with me. I hope that, once my support coordinator writes the agreement that I can’t be let out the door, which she’s going to do on Tuesday, this at least will stop in this case. I’m pretty sure there are many other unwritten rules about my care though.

If we were having coffee, lastly I’d tell you I’m really feeling like doing something with polymer clay again, but I am rather uninspired. I did try to make a flower pendant this evening, but so far it’s just a cut out flower with no detail.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

#WeekendCoffeeShare (July 13, 2024)

Posted on by Astrid

Hi everyone. I’ve once again not been blogging, but this time it’s not because I’m struggling. Well, I still don’t feel the greatest, but the main reason I haven’t blogged is that something else has caught my attention. I’ll talk about it in a minute. Want a coffee? I’m joining #WeekendCoffeeShare once again. It’s past 10PM, so no coffee for me, but since this is a virtual get-together, you can have whatever you like. Let’s have a drink and let’s catch up.

First, if we were having coffee, I’d share about the weather. It’s been all over the place. On Tuesday, it was hot and humid with a daytime high of 30°C. Then we got this giant thunderstorm. Wednesday and Thursday were still okay with daytime temperatures of around 22°C. Yesterday though, it was not just raining all day, but it was freakin’ frigid with a daytime high of 16°C. Today is slightly better.

If we were having coffee, I’d tell you that, despite having my new Apple Watch wristband, I didn’t meet my movement goals each day this week. I blame the weather. I thankfully no longer care as much as I used to and can sit back and relax every now and again rather than having to keep up with my activity rings. I did try to walk each day (except for yesterday) and went swimming on Thursday too.

If we were having coffee, next I’d tell you that, yesterday, I went to an Eye Association meeting for young people who are blind or visually impaired (and a few who have an eye condition but can still see quite well). I originally thought I’d be too old to qualify as a “young person”, but the target age group is 18-45. I had a good time, but towards the end got quite overloaded. I had a near-meltdown when the taxi driver called me but I couldn’t hear him over the noise in the cafe in which the meeting was held. I for a bit thought I upset the entire group and wouldn’t be welcome anymore, but thankfully it wasn’t this bad according to several people.

If we were having coffee, lastly I’d tell you all about my latest obsession. I originally wanted to write a separate post about it on Thursday, but got distracted by the actual thing. It’s learning Spanish on Duolingo. I’m currently still at the early A1 level of proficiency. My spouse and mother-in-law have both been learning Spanish on this app for several months. What got me into it though was a conversation in a Facebook group about language learning. Some people said Duolingo isn’t always correct, but I’m not sure whether they were referring to a specific language. I can see why though in a way, as for example early on in the Spanish course, you’re learning the word “elegante”, which Duolingo claims translates to “elegant”. Now I’ve never heard an English-speaking person use the word “elegant” in everyday conversation. I honestly couldn’t care less though, as if I ever get to a point where I can actually talk in Spanish outside of the app, I’ll teach myself the finer details of conversation.

#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.

A Birthday Visit From My Sister and Her Family

Posted on by Astrid

Hi everyone. It’s really been forever since I last touched the blog. I won’t even promise I’ll try to make a habit out of posting more regularly, as I just don’t know when the motivation and inspiration strike again.

I originally wanted to link this post up to Leigha’s Sunny Sunday, then realized my post, though not overtly negative, wasn’t specifically positive either. I could say that yesterday was a literal sunny Sunday though, with lots of sunshine and daytime temps of 25°C. We’re supposed to get sunny weather at least up till this Thursday. I actually like it, but some people are already complaining that it’s too hot. Then last week they were complaining that we didn’t get a proper summer, as it was raining and the temperature usually didn’t get above 18°C.

Yesterday, my sister and her family (my brother-in-law and two nieces) came by for an early visit for my birthday. They arrived here shortly after 9AM, because they had wanted to visit the petting farm here on institution grounds and, according to the website, its opening hours were 9AM-10AM. When we arrived, we saw that it wouldn’t close till 11AM. Its size was a little disappointing to my sister and my nieces (particularly the older one) were tired so it was hard to keep their attention.

We also took a walk on grounds, during which my older niece went on the swings. I tried to push her, but just as my sister was about to take a picture, she jumped off. Both of my nieces also had a turn playing the outdoors xylophone. At one point, my youngest niece, who is two, played “Jingle Bells”. Couldn’t have been farther away from Christmas, but who cares?

The family gave me two unicorn-themed presents: a unicorn bag filled with shower products and a My Little Pony Unicorn which supposedly has candy-scented hair. I probably looked a bit disappointed when I opened the gifts and to be honest I was, but when I talked to my spouse later on I realized from my nieces’ perspectives these are really well thought out gifts. My sister also promised me a gift card for one of my favorite claying supplies stores, which will be really very much appreciated.

We had lunch in my room and backyard. I had ordered poppy seed and sesame seed buns, as well as muesli rolls, from the local bakery. These were delicious!

The family left at around 1PM. It was a good visit overall, although looking back I’m glad I didn’t have my spouse over as well, as that would’ve been too tiring.

#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

Hi everyone. How are you doing? I’m joining #WeekendCoffeeShare again. It’s nearly 9PM Saturday, so I’ve long had my last cup of coffee for the day. If you’d like, I can offer you a cup of green tea, a glass of soda or some water though. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been quite good with daytime temps most days around 22°C, sometimes higher. On Thursday, we did get a thunderstorm, which scares me.

If we were having coffee, I’d share that, as a result, I had no trouble meeting my movement goal on my Apple Watch each day. I went for walks each day. On Thursday, before the thunderstorm, I also actually rode the side-by-side bike for a little in the morning and then we cycled to Colmschate, a neighborhood of Deventer, the nearest city, in the afternoon. In total, I did 25km of cycling according to my Apple Watch. I reached double my movement goal that day.

If we were having coffee, next I’d say that, generally, Thursday was my best day of the week. I finally worked on a polymer clay project once again. The new student staff was being introduced to me so I decided to show her how I make a unicorn. I got distracted by the thunderstorm a lot, so the unicorn didn’t turn out as great as I’d hoped, but oh well.

If we were having coffee, I’d tell you that the rest of the week was a bit challenging. I’ve been struggling with attachment issues lately. I keep clinging to my “favorites” among the staff. I’ve decided I will discuss this with the behavior specialist when I’m having en appt with her and my mother-in-law on Tuesday, as it really needs to stop for my and the staff’s sake. I mean, I’m allowed to have preferences re staff I get along with, but my anxiety around them abandoning me and the resulting distress isn’t healthy and besides, it might just lead to that exact thing if they feel I’m too clingy.

If we were having coffee, finally I’d share that my spouse and I were trying to figure out ways for seeing each other over the weekend, since due to Pentecost all shops and lunchrooms are closed on Sunday and Monday. I finally came up with the idea of traveling to our house by ParaTransit on Monday. I haven’t been there since Christmas. It should really be cool.

#WeekendCoffeeShare (May 11, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s been a long week, honestly, so time for a cup of coffee, green tea or a smoothie. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been quite warm and sunny most days, with daytime highs around 20°C. Tomorrow, the temperature is even supposed to reach 25°C. The mornings have been cooler though, as it’s not yet July, obviously. Which makes me think, with temperatures like this in May, will we get a soaring hot summer again? Most likely. I love warm weather, but it’s not like I want summertime temps over 35°C.

If we were having coffee, I’d tell you I’ve been walking a fair bit over the past week. I also rode the side-by-side bike yesterday. We finally figured out how to make it so that I can actually push the pedals properly rather than just moving along with the person who’s on the steering side of the bike.

If we were having coffee, I would tell you that, on today’s morning walk, we came by the intensive support home and several clients were calling out to me. I decided to come over and join them in their backyard. Eventually, one of the staff who did work there when I still lived there, joined us and offered me a cup of coffee. I think that’s nice!

If we were having coffee, I’d share that, finally, it looks like my orthopedic shoes are actually good to wear. The last adjustment was to the front, which scratches the ground due to my ever-worsening drop foot, causing the shoe to need repairing almost on a weekly basis. Now, it’s not like it doesn’t still scratch the ground and get damaged, but not nearly as much as it used to. And the big positive: I can actually wear these shoes without getting blisters. Like, okay, that’s normal, but I only used to be able to wear my specific brand of walking shoes and I’d get blisters from everything else, including every pair of orthopedic shoes I’ve tried before. I have actually been wearing these shoes most of the day for the past few days without a problem.

If we were having coffee, I’d report that, speaking of my drop foot, the physical therapist has been here. We went for a 20-minute walk, during which I didn’t walk with a drop foot as much as before, thankfully. It hasn’t had me convinced that my mobility isn’t worsening, but at least it isn’t as bad as I’d feared. I mean, it could just be normal aging with mild cerebral palsy.

If we were having coffee, I would share that I bought yet another pair of new headphones. Originally, I wasn’t intending on giving up on my AirPods, but because they keep losing connectivity to my computer, I needed headphones that come with a wired option. Well, guess what? The wired option for the JBL Tune 770NC headphones isn’t all that awesome, but the headphones don’t lose connection to my computer when connected via Bluetooth. Besides, it can be connected to both my iPhone and computer at the same time. How I wish I’d known about these before buying the AirPods, that were literally three times the price of these headphones.

If we were having coffee, I’d share that I also finally replaced my desk chair. I got a gaming chair. That’s the reason I have been wearing my orthopedic shoes all day: the chair is too high for me to sit on without shoes on. Other than that though, it’s much better than my previous chair.

I also ordered a table and two chairs for in my little backyard. These weren’t in stock at the store I went to, so I’ll have to come back to collect them. While at that store, I saw a really cute unicorn soft toy and just had to get it.

If we were having coffee, lastly I’d admit that I have been struggling with my mental health again and, as a result, haven’t been too inspired in the creative department recently. I do really hope to get back into the groove soon. I did, last week, buy some kitchen tools, like measuring spoons and a sugar/flour sieve. I’ve only used the measuring spoons for smoothie making so far, but that’s a start at least.

Opportunities for Peer Support

Posted on by Astrid

Hi everyone. Recently I was talking to my spouse about ways to enrich my life and my spouse mentioned trying to connect to more people through peer support. I have some negative experiences with peer support, for example being kicked out of the Dutch DID peer support group for allegedly being a faker. However, once I’ve found the right tribe, peer support could certainly enrich my life.

Last Tuesday, I attended an online meeting for my regional branch of CP Netherlands, the Dutch cerebral palsy alliance. Even though I’m not 100% sure I have CP, I was welcomed with open arms. Originally, the organizers were thinking we may need to end the meeting early, as there were only five of us in attendance including them. However, we ultimately chatted the entire 90 minutes of the meeting. I even showed the other participants the polymer clay dinosaur my spouse and I had created.

One of the other participants is also visually impaired in addition to having CP. He told me there’s a “young people’s” (ages 25-45) meeting of the Eye Association (for blind and visually impaired people) in Zwolle. Zwolle is about 50km from where I live, so not too far away but not quite in my local area. This means I can travel there at a heavily discounted price using my national ParaTransit taxi card.

I also found out, when looking at the Eye Association website, that there are general meetings in Apeldoorn, Deventer and Zutphen, the three cities nearest to where I live. These meetings, since not catering to “young people” specifically, will most likely be mostly attended by people over age 50, but I don’t mind. I don’t yet have a local ParaTransit taxi card though, so can’t go there yet. My male assigned staff is going to apply for one for me though.

On Saturday, I attended the annual nationwide conference of CP Netherlands. It was less informative than the last few times I attended, since I knew most things the workshop leaders talked about already. However, it was much better with respect to peer support, in that I got to meet several people I’d either spoken with at the online meeting the previous Tuesday or met at nationwide conferences before. I also felt validated once again. And, yet again, I came away with the idea to finally ask my GP for a referral for rehabilitation medicine. Given that most likely my childhood medical records are all gone somehow, I’m pessimistic about getting any answers as to whether I actually do have CP or not. I’m trying to reason that this might be beside the point, but honestly my gut instinct is that it’s not.

I’m linking up with #WWWhimsy again.