Desperate Yet Determined #WotW

Posted on by Astrid

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

#WeekendCoffeeShare (November 6, 2021)

Posted on by Astrid

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

A Good Enough Tuesday

Posted on by Astrid

Today is November 2. It’s a Tuesday. A good enough Tuesday, mind you. I didn’t dwell too much on it being the anniversary of my crisis in 2007.

I didn’t really get stressed out about the prime minister delivering another press conference, one in which he’d be announcing new COVID-related restrictions, either. If I’m correct, the press conference is happening right now or has just finished. When I passed by the living room, where the television is, I heard the prime minister say something about “strongly recommending” us to social distance again. Well, whatever. If it’s just a “strong recommendation”, it’s a suggestion, so no-one will do it. Masks are similarly “strongly recommended”.

I didn’t do too much today. Had my blood pressure taken this morning, which was within the normal range (112 over 77) even though I had already been up for a bit. I normally ask that staff check my blood pressure first thing in the morning, because it’s usually up a little when I’ve been active. Not this time though.

I also went to Action, a budget store, to buy some Christmas decorations. I won’t be putting them up till early December, but I wanted to be early buying them to make sure I still had a wide selection to choose from.

I have been wanting to craft too, but that will have to wait till tomorrow. After all, then one of my more creative one-on-one staff will be there for my day activities shift. I will finish the polymer clay owl I’ve been working on.

I did struggle a bit with attachment issues and emotional flashbacks today, but both were manageable. Overall, like I said, it was a good enough day. And that’s totally okay.

#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?

An Eventful Wednesday

Posted on by Astrid

Hi everyone on this Wednesday evening. The weather was beautiful today. It was cold in the morning, but sunny and about 21°C in the afternoon.

This morning, I had an appointment with my community psychiatric nurse. I hadn’t seen her in four weeks, as two weeks ago she had had to cancel due to a crisis situation. This time, I was able to talk through some of my struggles. I vented some of my grief with respect to my blindness. I ended on a positive note though, sharing the wonders of VoiceOver Recognition.

At 1PM, I had a quick dental check-up. The dentist comes to our day center four times a year for these, so I didn’t have to travel. Thankfully, all was well and I was literally gone within minutes.

Then I had a talk with my support coordinator about my upcoming care plan review. We had to discuss my risk inventory. This is a long list of possible risks someone can experience, such as of choking, falling, epileptic seizures, aggression, etc. With each box, the staff have to tick of “Yes” or “No” and if yes, elaborate on the risk. I disagreed with several “No” answers, but then my support coordinator explained that this is within the current care situation. For example, there is no risk to my personal hygiene because my staff are there to help me with this.

I did get my coordinator to add a “Yes” to risks re social media use because my Internet use can often trigger me and lead to meltdowns. I did ascertain that these risk assessments are not necessarily associated with restrictive measures. In other words, just because there’s a risk associated with my Internet use, doesn’t mean they need to restrict my online activity.

Later, I realized there really needs to be a “Yes” in the box on risks associated with overweight too. I had said this at the meeting but my coordinator had said that since I don’t suffer with sores due to fat or the like, there’s no risk. I do feel there is, given that my BMI is above 30 and I need support in maintaining a healthy’ish diet.

I went on three walks this afternoon and evening. On my way back from one of them, my one-on-one asked me whether I wanted to photograph the chickens near the day center. A client at another care home here has always wanted to have chickens and he finally got his wish granted a few weeks ago.

Unfortunately, only one of them lays eggs so far. The guy whose chickens these are says the other one’s crest needs to get redder before she will lay eggs. My husband said it might actually be a rooster though. I hope not.