#WeekendCoffeeShare (October 30, 2021)

Posted on by Astrid

Hi everyone. It’s almost 8PM here so I already had my last cup of coffee. Still, I’m joining #WeekendCoffeeShare. Or Weekend Soft Drink Share for me maybe, although I didn’t have a soft drink this evening either. Instead, I decided to have water with my chips. We have Pringles, the original flavor, so if you’d like some, here you go. Let’s have a drink and a snack and let’s catch up.

If we were having coffee, I’d share that, like I said yesterday, the weather was good most of the week. Partly cloudy, partly sunny with maximum temperatures between 13°C and even a rare 18°C on Thursday. Today though, it was raining most of the day. By early evening though, the rain stopped for a bit.

If we were having coffee, I’d tell you that, yesterday, I got in over 14K steps thanks to the great weather. Today, I only managed about 6K steps, but I did get in over 250 steps an hour during seven out of the nine hours between 9AM and 6PM. I consider that quite an achievement!

If we were having coffee, I would ask you all to pray for wisdom for both me and my GP with respect to our upcoming appointment regarding my abdominal discomfort. Like I said yesterday, I am grateful my X-ray was normal, but my discomfort is all but gone.

If we were having coffee, I would share that I ended up not pursuing the issue I mentioned yesterday with the €90 software I bought via PayPal from some shady vendor. I did reach the vendor, but he claimed the problem I was experiencing wasn’t on their side, so there’s no way I’ll get my money back. Oh well, I hadn’t had my hopes up too high.

If we were having coffee, I’d share that I finally did start crafting again. The project my staff saw that she brought the supplies in for today, was a polymer clay owl crafted around a metal ring. She also brought a finished owl she’d borrowed from the storekeeper who had inspired her, so that I had an idea what it should look like. It looked very different from how I’d expected it to look. I started working on the project today.

If we were having coffee, lastly I would tell you that my assigned staff, the one who was on sick leave but is slowly recovering, came to the care home for a few hours again today. Remember how I said a few weeks ago that I worried that I caused her burnout by sucking up her energy? Well, she went out of her way to reassure me that I didn’t make her sick.

She also cooked a meal for dinner with another client. It was a potato, leek and mince casserole. At first, I wasn’t sure I’d like it, but I did.

How have you been?

#WeekendCoffeeShare (October 24, 2021)

Posted on by Astrid

Hi everyone. It’s really sunny out this Sunday afternoon! How about you join me for #WeekendCoffeeShare. I had quite a lot of coffee so far today, as I went out to McDonald’s (well, through the drive-through) with my husband for lunch and had coffee there. It was better than the coffee I had at Subway last week. Then when I came back to the care facility, I had a cup of coffee again. If you’d like a cup of it too, I’m pretty sure there’s still some left, as my staff said her colleague had just made a fresh pot. Let’s have a cup of coffee and let’s catch up.

If we were having coffee, I’d almost invite you to the balcony. It’s sunny, after all, but quite cold. Besides, the balcony is covered in fallen leaves. So I guess we’ll sit indoors after all.

If we were having coffee, I’d share that I managed to get in 12.5K steps yesterday. That’s a huge win, as I had thought my physical condition was declining slightly. Apparently not.

I also went on the elliptical for half an hour on Friday and am planning to go onto it for another 30 minutes later this evening.

If we were having coffee, I would tell you that all this is slightly comforting in light of my probable IBS symptoms and the upcoming abdominal X-ray. I mean, if it’s something very serious, I guess I’d have other symptoms, such as unexpected weight loss or declining physical fitness. Please all still pray for me that the X-rays will show something easily treatable.

If we were having coffee, I would share that my husband bought a new car. Well, he’s going to exchange it for our current Volkswagen Golf on Wednesday. It’s a Daihatsu Cuore, a very small car. His VW is still in relatively good shape, but both of us wanted a cheaper car with respect to gas usage, insurance and tax. With the deal he got, my husband says he’ll have saved enough on these to cover the cost of buying the Cuore within the year. I must say I feel a lot better about this car than I felt back when my husband bought the VW.

If we were having coffee, lastly I would share that I woke up after a nightmare early this morning. It wasn’t yet time for my one-on-one to arrive, so the morning staff helped me put on my music pillow and settle back to bed. I thankfully slept well for about an hour and a half after that. I am really hoping this means that the topiramate is working. I mean, my nightmares aren’t your standard scary dreams and as far as I’m aware, topiramate doesn’t suppress REM sleep altogether, but it does seem to make it easier to let go of anxiety-inducing dreams.

How have you been?

#WeekendCoffeeShare (October 17, 2021)

Posted on by Astrid

Hi everyone. I’m rather late joining #WeekendCoffeeShare this week and I’m afraid there’s no coffee left. You can help yourself to a soft drink or a glass of water though. I also have chips in my cupboard. After yesterday’s crying fit over there only being the wrong flavor left, I decided to buy some myself. I did ask the staff to put them into a cupboard which they only have the keys to, but I’m pretty sure they’ll love to open it for you. Let’s have a drink and a handful of chips and let’s catch up.

If we were having coffee (or a soft drink and chips), I’d share that this week is still quite meh. Early in the week, I was feeling a little more optimistic at the prospect of starting my increased dosage of topiramate soon. I started it on Friday and so far, unfortunately, no change. I am grateful though for no side effects either.

Over the weekend, I’ve really been struggling. I landed in a bit of a crisis earlier this evening, but thankfully pulled myself out of it. I did E-mail my nurse practitioner and CPN at mental health to let them know I’m worried about deteriorating. My husband said I’m not, but the fact that I keep increasing my meds, tells me otherwise

If we were having coffee, I’d moan about my orthopedic footwear after all. The shoes squeak and, though I’m still not in terrible pain, I cannot walk for more than twenty minutes on them without them feeling horribly uncomfortable. Mostly my left foot, the foot on which I wear the AFO, starts to drag. I haven’t heard back from the physical therapist, but am pretty sure she’ll just say I need to push through.

If we were having coffee, I would show you all the soap I made for my assigned staff, the one who’s on sick leave. I heard last Thursday that she’ll remain off work until the middle of November or so due to among other things her needing to use up all her days off for the year or they’ll disappear.

Like I said yesterday, the soap contains vetiver, lavandin and clary sage essential oils. I decided to use a white soap base and no colorants, because I felt the scents would speak for themselves.

If we were having coffee, lastly I would share that my husband came by today. We drove to Subway for lunch. I dutifully wanted to get out my CoronaCheck app, but my husband told me to wait. As he expected, they didn’t ask us for it. The taco beef wrap I chose, was rather boring and I’m pretty sure the mince they put in it was vegetarian rather than beef. Oh well, now at least I know what not to choose next time.

How have you been?

#WeekendCoffeeShare (October 9, 2021)

Posted on by Astrid

Hi everyone on this sunny Saturday. Well, it’s not sunny anymore, as the sun has just set, but it was sunny all afternoon. Today I’m joining #WeekendCoffeeShare again. I’m in Lobith and I usually have tea in the evenings here, but if you’d like a cup of coffee, I’m sure my husband can make you one too.

If we were having coffee, I’d share that this week was all quite meh. I’ve said this a couple of times already over the past week. It’s all just one endless stream of sadness, triggers and the resulting flashbacks.

I’m pretty sure I’ve decided I’m going to ask my nurse practitioner to up my topiramate on Monday. I hope this means I won’t have to wait for my next weekly med refill on Saturday to get the upped dose. Of course I know meds won’t solve everything, but I can’t think of anything else right now.

If we were having coffee, I would share that I did find some inspiration in the soaping and essential oil departments again. Yesterday, I even managed to make a simple butterfly melt and pour soap.

If we were having coffee, I would tell you that I also managed to get in more steps this week than last week and that’s not counting tomorrow yet. Okay, last week was quite a bad week in the walking department, but oh well, let’s be thankful for the little things.

If we were having coffee, I would tell you that my orthopedic footwear finally returned from whoever (Shoe or AFO Guy) was working on it earlier this week. It finally seems to be okay now. Not great, but okay. I have at least been able to walk some 25 minutes on the footwear without too much pain and am pretty sure it needs getting used to as well.

If we were having coffee, I would repeat how grateful I am for all the lovely comments on my blog. Like I mentioned last week, I’m participating in #Blogtober21, though my only goal right now is to publish a blog post everyday. I’m no longer going with prompts. Today, I almost wouldn’t have written a post, as I’m with my husband in Lobith like I said and this usually means I can’t concentrate. However, I didn’t want to break my streak.

If we were having coffee, lastly I would share my husband cooked me a delicious rice and meatballs meal this eveningn. Neither of us was full after it, so we ended up ordering something else afterwards. However, the meal was very tasty!

How have you been?

#WeekendCoffeeShare (October 3, 2021)

Posted on by Astrid

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

#WeekendCoffeeShare (September 25, 2021)

Posted on by Astrid

Hi everyone on this cloudy but warm Saturday afternoon. We’re supposed to get temperatures to rise to as high as 25°C tomorrow. I remember once, I think it was in 1999, writing in my diary in late September that I wished for this high a temperature for once that year still. Three or four years ago, it even got to 27°C one day in mid-October.

Anyway, I’m joining #WeekendCoffeeShare. It’s 2:30PM, so I just had my afternoon coffee, but the other clients are still having theirs. Yesterday, the late shift actually came to my room with another cup of coffee at 3:15PM, because apparently the other clients had been late having theirs and she erroneously thought this meant I still needed to have coffee too. I didn’t mind, of course. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that I managed to get my corona pass ready in time for this requirement in restaurants and indoor events today. Not that I’m likely to go eat out at a restaurant or go to the theater anytime soon. In fact, I’m feeling a bit off about this requirement, even though, as a fully vaccinated person, I’m good to go. Getting the CoronaCheck app, on which you need to create your pass, to work, was a bit of a hassle, because for some stupid reason the “Next” button to get beyond the introductory screen wasn’t easy to locate with VoiceOver. I eventually asked one of my staff to click that button for me and from there could do everything myself.

If we were having coffee, I would share that I celebrated two years in the care facility earlier this week. I made a cheesecake with my favorite large cookies, ie. stroopwafels.

Stroopwafel Cheesecake

I did worry at first whether the other clients could eat it, as most are at higher risk of choking. However, apparently the staff were able to sufficiently blend the cake so that it was edible by everyone.

If we were having coffee, I’d tell you that this week was quite a good one in the walking department. I got in over 10K steps almost everyday. That one day that I didn’t reach my goal, I really should have looked at my Fitbit, since I needed only like 100 more steps to reach it.

If we were having coffee, I’d tell you that, at the recommendation of one of the community psychiatric nurses at the mental health team, I’ve been taking my phone with me whenever I go on walks. We were discussing my grief about my vision loss and the wonders of technology and she suggested I take more pictures on my walks. Last Tuesday, I took a picture of the cows in a nearby field.

Cows in a Field

If we were having coffee, lastly I would share that I sadly haven’t been too creative lately. I tried to create a necklace this morning, but found out midway through it that I didn’t have enough of a certain kind of beads that I needed for it. I didn’t want to start redesigning it all over again, so will do that at some later point.

Overall, this week wasn’t too intense, other than Wednesday. It was a pretty good week.

How have you been?

#WeekendCoffeeShare (September 19, 2021)

Posted on by Astrid

Hi all on this late Sunday evening! Boy, am I late joining #WeekendCoffeeShare. I’ve had all my coffee for the day and even had my last soft drink. If you’d like one, I’m sure I can still pass you one through the Internet though. Let’s have a cup of coffee or another drink and let’s catch up.

If we were having coffee, I’d tell you that the weather is still pretty good for September here. Temperatures rose to roughly 20°C in the afternoon and it’s been mostly dry with some sunshine and some clouds. Today while in the car being taken back to the care facility from Lobith, my husband even said I had to wear sunglasses. Now sadly the sunlight wasn’t particularly bright to my (almost) totally blind eyes, but yesterday I’d gotten a headache from what might’ve been exposure to bright sunlight that I wasn’t consciously detecting.

If we were having coffee, I’d share that my husband and I had our tenth wedding anniversary today. We celebrated it yesterday with a large Domino’s pizza. We each had a milkshake too, but it was far too thick for my liking. I couldn’t finish drinking it, whether I tried the paper straw that came with it or my own silicone straw.

If we were having coffee, I would finally show you the picture of the present I gave my husband for our anniversary. It’s a polymer clay heart with the text “Assie houdt van je” stamped into it. Assie is my nickname (and no, in Dutch, there is no connotation to asses) and “houdt van je” is Dutch for “loves you”. There is magnetic tape at the back so that my husband could hang it on the fridge.

Polymer Clay Heart for My Husband

My husband really appreciated the gift.

If we were having coffee, I would tell you that the rest of my week was okay. I was a little sad and grieving the loss of my eyesight, as well as worrying about my upcoming care plan review. The review won’t be until September 30 and of course it doesn’t involve judgment and it isn’t a test.

However, I have been increasingly aware of my inner fight regarding my wish to stay here in Raalte and yet my feeling that I ought to be looking for another care facility or working towards living with my husband. In my paragraph about the bright sunshine, I almost wrote I was taken “home to the care facility” rather than “back”, as if our house in Lobith is less of a home to me than the care facility. My support staff would consider this progress, in that I’m beginning to feel safe here at the care facility. However, there’s an inner voice that tells me that this is betraying my husband. I know he supports me staying here for now, but I also know he struggles with the distance. Ugh, this is so hard.

If we were having coffee, lastly I’d share that I’m very curious about iOS 15, which will be out tomorrow. Like almost every year, there is one critic on the Dutch VoiceOver E-mail group who warns all of us to wait because it’ll be drama. This year though, the accessibility bugs seem not as serious as last year and especially the year before. Still, I’ll probably wait at least a couple of weeks until at least some of the other members of the group have actually installed the official release. I am really curious about live text in photos and improved VoiceOver image recognition though.

How have you been?

#WeekendCoffeeShare (September 11, 2021)

Posted on by Astrid

Hi everyone. It’s long past my last coffee break of the day, but I’m still joining #WeekendCoffeeShare. Fancy a soft drink or a glass of water? I’m off to bed after I finish this post, but I think we can still have a catch-up.

If we were having coffee (or water or a soft drink, but you get the idea), I’d share that the weather was good for most of the week. On Wednesday and Thursday, the temperature rose to around 27°C. That’s pretty awesome for September, isn’t it? It was also sunny most of the time. We got some slight thundering Thursday and Friday, but thankfully nothing too bad.

If we were having coffee, I’d proudly announce that, thanks to the good weather and my feet cooperating, I was able to get in a lot of steps over the week. I so far got in nearly 75K steps and that’s not including Sunday yet.

If we were having coffee, I would tell you that Shoe Guy finally took my orthopedic shoes to his work station with him. He saw pretty quickly that, not only is the combo with the ankle foot orthosis (AFO) giving me problems, but the shoes are also both far too wide. Let’s pray he’s going to get both issues fixed soon and that’s the end of the footwear saga.

If we were having coffee, I’d share that the day center reopened on Monday after eighteen months of being more or less closed due to COVID. I, thankfully, get day activities in the home. In fact, during the time of COVID, my one-on-one was combined with another client’s care, but I now have my very own day activities shift from 10:15AM till 3PM. I was kind of scared that this’d mean I had taken a staffer away from my old group, but apparently not.

I am allowed and more or less expected to visit my old group for a little while each morning, thankfully with my one-on-one accompanying me. However, last Thursday, I was busy preparing my niece’s birthday present, so I asked if I could switch my visit to the afternoon. That was totally okay. My fellow clients at the day center do definitely appreciate me visiting. That makes me feel so grateful.

If we were having coffee, I’d share that I’ve been busy with my husband’s wedding anniversary present today. That’s the secret project I mentioned yesterday, but I won’t disclose what it is exactly until my husband has received it himself next week. He did jokingly nag me a little, but I won’t spoil it to him either.

If we were having coffee, lastly I would tell you that, no, I haven’t lived under a rock all day, ignoring the fact that it’s the anniversary of 9/11. Okay, I did mention it in my other post today, only to blather on about myself. However, it could be me, but the news seems incredibly quiet about it too here. I don’t watch television or read newspapers, only scrolling through so-called “important” news on my iPhone’s home screen. I’ve seen announcements of the deaths of Peruvian terrorist leader Abimael Guzmán and Dutch former train hijacker Junus Ririmasse. There’s also another protest against Dutch pandemic management measures today. The only news article mentioning 9/11 I’ve seen today, is about some cartoon on politician Sigrid Kaag. I cannot see the actual cartoon, of course.

I do feel a little off having seemed to ignore the world’s major crisis of my teens. Then again, I’d rather live under a rock than get depressed by the world’s events.

How have you been?

#WeekendCoffeeShare (September 4, 2021)

Posted on by Astrid

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

#WeekendCoffeeShare (August 29, 2021)

Posted on by Astrid

Hi everyone, how are you? I’m a bit late joining #WeekendCoffeeShare, as it’s already Sunday. I just had my afternoon coffee and, like I said last week, my Senseo is with my husband now. Now I’m assuming he won’t use it much, as not only is he more of a freshly-brewed coffee person, but he’s trying to cut back on his caffeine intake. That’s his decision though. Let’s have a cup of coffee (or pretend to) and let’s catch up.

If we were having coffee, I’d share that I had a good week overall. The weather’s been okay. Not as warm as I’d like it and a little windy for my liking too, but at least it’s been mostly dry.

If we were having coffee, I would share that I decided not to join Steptember, the annual cerebral palsy fundraiser, this year. I participated last year, but the pressure of having to get in 10K steps each day (or as many as I could) and raise money, was a bit too much for me.

If we were having coffee, I’d also moan about my AFO. Yes, it’s been a while, but if you’d thought that no news is good news, you would be wrong. My AFO had been with the orthopedic instrument maker, whom I’ll call AFO guy, for a few weeks, but upon return, we found out that it’s still not working well in combination with my orthopedic shoes. Now AFO guy and shoe guy were both contacted by the physical therapist and it’s up to them to figure out how to solve the issue.

If we were having coffee, I’d also whine a little about my foot pain. The physical therapist hasn’t gotten back to me about that, so I’m not sure what’s causing it. Could be my shoes, since they’re really old (the non-adaptive ones I now wear). Please pray AFO guy and shoe guy will figure out the issue with my adaptive footwear soon.

If we were having coffee, I’d ask you to pray for my niece. I didn’t ask my sister permission to share her hip dysplasia diagnosis last time, which I think now is wrong, so I won’t be sharing any more details. However, she is definitely in need of continued prayers.

If we were having coffee, lastly I’d share that I’ve been really crafty over the past week again. I created some lovely polymer clay ornaments, as well as a hand cream and keychain for one of my fellow clients, who had his birthday on Wednesday. Yesterday, I encountered a lot of frustration with one of my Fimo Professional clays being very crumbly and hard. I eventually managed to restore it to health though.

How have you been?