#WeekendCoffeeShare (April 18, 2021)

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

#WeekendCoffeeShare (April 11, 2021)

Hi everyone on this cloudy and slightly rainy Sunday evening. I’m rather late writing my #WeekendCoffeeShare post this week. I’m having a rather hard time planning when to write, as I cannot concentrate on it when my one-on-one staff is with me and yet struggle to feel well enough to write when alone. I just finished my dinner, so no coffee for me as of yet (though with my parents, coffee after dinner was a ritual). If you’d like a Senseo though, I can make you one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was rather bad weather-wise. It’s been raining all week. On Monday and Tuesday, it even snowed a bit. It’s been near freezing cold too. How is your weather?

If we were having coffee, I’d share that this week, the physical therapist and orthopedic shoemaker came by to discuss my getting semi-orthopedic shoes. My current, store-bought shoes aren’t great for fitting my AFO in. They also have laces, which I can’t tie myself. I’ll hopefully hear next week what models they have available. I did try on a pair already, but this was just to get an idea of what I’d need.

Thankfully, the shoes will be fully covered by long-term care. This did lead to a bit of self-loathing, in that I feel like a burden for costing so much with my one-on-one, the weighted blanket and all the other costs and now this. I try to calm myself by thinking it wasn’t really my decision. Besides, I will most likely experience less pain when walking and be able to walk longer distances. Still, I can hear my inner critic say that I fake my mild cerebral palsy.

If we were having coffee, I’d share that, last Friday, I was in a crisis. I don’t even know what led to me starting to feel triggered. At some point though, I left my room at night. On my way to wherever, I bumped into something and swore. Then I decided I’m unforgivable anyway now and decided to self-harm. I’m okay physical wound-wise and the night staff eventually calmed me down. Still, I have been feeling really unsettled all weekend.

If we were having coffee, lastly I’d share how proud I am of myself for continuing to blog each day and sometimes more than once. Of course, I’m busy with the #AtoZChallenge, but I also managed several other blog posts. That’s pretty awesome if you ask me.

How has your week been?

#WeekendCoffeeShare (April 4, 2021)

Hi everyone on this chilly and cloudy Easter Sunday. I am rather late joining in with #WeekendCoffeeShare. The reason is that I’m participating in the #AtoZChallenge too and couldn’t find the time to publish another post until today. I just had my afternoon coffee and am going to have a soft drink in a bit, so if you’d like something to drink, that’d be great. Let’s grab a drink and let’s catch up.

If we were having coffee, I’d share how much fun I’m having with the #AtoZChallenge. It is a great way of connecting with new bloggers and challenging myself to write (almost) everyday. For those who don’t know, the challenge is to write posts using each letter of the alphabet on each day of April except Sundays. This is the reason I have time to write a blog post today. My theme is aromatherapy and natural wellness.

If we were having coffee, I would share that this week was rather eventful in general. On Monday, I was very much triggered. I have been having emotional flashbacks a lot, as well as paranoid thoughts about my former clinician reporting me for care fraud if she finds out I’m in long-term care. My staff try to reassure me that I’m not responsible for my care funding. After all, my staff, the manager and behavior specialist applied for me. I am still unsure though.

Anyway, on Monday, when I was particularly triggered, I did an exercise of hitting a pillow to symbolically kick my former clinician out of my life. It was truly empowering!

If we were having coffee, I would also share that, on Friday, I had a treatment review at the mental health agency. My nurse practitioner tried to tell me that I’m already actually processing my trauma with the steps I’m taking now, such as the exercise on Monday. This validated me. My community psychiatric nurse, however, wasn’t fully sure of her role in my treatment and wondered whether she could visit me less frequently. For now, we have decided against this in order to maintain weekly appointments with mental health, alternatingly with my nurse practitioner and CPN.

If we were having coffee, I’d tell you that I finally managed to go to Lobith over the weekend. My cold is still not fully gone, but it’s gone enough that I could see my husband. We had delicious Airfryer fries, turkey and peas for dinner yesterday, as well as pudding for dessert. This morning, we had breakfast in front of the television while watching Hour of Power. It was great!

How has your week been? And how’s your Easter weekend?

A Wonderful Wednesday

Hi everyone. This is going to be a quick post. I am really pleased with myself right now. Today is a great day. The sun shone, the birds sang and I broke my daily step record!

In the morning, my day activities staff took me to the marketplace. We got fried fish for lunch. We also wanted to get fried chicken, but the poultry guy didn’t have that today. I also got cookie crumbs (yes, they’re a real thing). They were €2 a bag but two bags for €3, so I treated myself and got two bags. One of them, I already consumed. Then we walked to the supermarket to see if they had fried chicken and they did!

I also went on a walk before going to the marketplace. We went there by car and I didn’t look at my Fitbit until we were back. I wasn’t expecting to have gotten in many steps, but already had nearly 5,000 steps.

Then in the afternoon, my mother-in-law visited me. We went on over an hour’s walk together. The sun was shining brightly and it was really warm, about 24°C. I truly loved the birdsong, the ability to walk and the sunshine!

In the evening, I went on two more walks with my one-on-one. I got in over 19,000 steps, so just yet, I did a little dance just to get to 20,000 steps. That’s double my daily step goal. I broke my daily step record, which was at just over 17,000 on December 18, 2020.

I also got in 173 active heartrate zone minutes. I wasn’t really exercising for nearly three hours today, but the minutes I got in the cardio zone, count twice.

I did worry a little about my heartrate not returning to normal nearly as fast as my mother-in-law’s. Then again, she is of average build, while I am, as much as I hate to admit it, still obese. I’m trying not to worry too much, since my resting heartrate is still within the normal range.

Overall, today was a wonderful day! Unfortunately, the temperature is supposed to drop to a high of like 13°C tomorrow. It’s not supposed to rain though, so I can still walk. That is, if my muscles don’t ache all over.

#WeekendCoffeeShare (March 27, 2021)

Welcome to another #WeekendCoffeeShare post. I just had my afternoon coffee about an hour ago and am going to have a soft drink in a bit. Of course, I can still make you a Senseo if you want. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that I’m just about as well as it gets with respect to my cold. I am still a tiny bit sniffy, but I don’t think it gets any better anytime soon. I didn’t go to Lobith this weekend, even though my husband had promised me pizza at our house if I did. After all, yesterday I still wasn’t convinced I was well enough. Instead, my husband is coming over tomorrow.

If we were having coffee, I would say that this past week has been great in the walking department. Like I said yesterday, I’ve been quite active. Today was an exception, as it was raining on and off all day so far. I hope to still get some steps in this evening.

If we were having coffee, I would talk some about the political saga that unfolded after last week’s general election. The current prime minister, Mark Rutte, won the election again, probably because people are used to him doing the corona-related press conferences. Before the election, he’d hinted at some restrictions being lifted for Easter. Of course, that was just a political game to win voters, as in the last press conference, only the curfew got moved from 9PM till 10PM.

Speaking of the lockdown, my husband predicts from what he’s read that most of the restrictions will remain until mid-June. I really hope he’s wrong, but at least we can still see each other (provided neither of us is under the weather).

If we were having coffee, I’d tell you I’ve been loving reading other blogs as well as writing my own blog posts. I’m not yet preparing for the #AtoZChallenge. Maybe I should, as it’s in less than a week.

I’ve also been in contact with WP support again. The reason is the news that the classic editor might be disappearing after all. I’m not sure WP support itself knows what it’s doing, as I get mixed messages. I’m trying to let it go for now though, as so far at least I can still blog.

If we were having coffee, lastly I’d share that we might get new staff here in my care home soon. I think I mentioned last week that a male staff was having a look around our home last week Saturday to see if he wanted to work here. Turns out he does. He’s been orienting here a few more times. He used to work in a home for people with intellectual disability who also have complex care needs due to behavior. I got the impression he didn’t like that anymore, so I feared I’d scare him away from wanting to work here. Turns out he’s going to work in both homes.

Then on Thursday, another prospective staff, also male, toured my care home. The manager informed me in advance that he was coming, which I liked. I’ll be curious to know if he decides to work here.

What’s been going on in your life?

Getting Active #WotW

Hi everyone. Today I’m joining in with Word of the Week. It’s been nearly a year since I last joined this linky, but today I’m inspired to. The idea is to sum up your week in a word or phrase. My phrase for this week is: getting active.

You see, last week I was still pretty badly under the weather. This week, though I’m not fully recovered, I’m getting back on track. Though I did walk most days last week, I didn’t get in any other exercise.

This week, so far, I reached my step goal of 10K steps a day each day. I am pretty motivated. Last week, my husband joked that I’d earn a Domino’s pizza for every five million steps I took. That’d take me about a year and a half if I reached my step goal each and every day. I don’t, of course, but I do meet the goal about three times a week on average. This week, five times, so far. I still marvel at the fact that, about three years ago, I merely dreamt about reaching my step goal a few days a week and considered it a sign of optimal physical health. This does show that, as much as I may think I’m deteriorating, at least with respect to physical activity, I’m not.

In addition to walking, I went on the elliptical both yesterday and today. I got in only about ten minutes each day, but that’s okay, considering I’m still not fully recovered from my cold. Yesterday, I listened to a Christian workout playlist. Today, I chose the Southern rock playlist I created some years back when I still went on the elliptical regularly. It was good to listen to my favorite song on that playlist, Jessico by the Kentucky Headhunters.

I also did some core training, ie. planking. I can do it for about ten seconds at a time, which isn’t much, but oh well. I know that if I continue to try, I’ll get better eventually.

Being able to be this physically active, truly boosts my confidence. I mean, I had to buy new clothes this past week and the jeans I ordered, seemed a bit tight at first. This caused me to feel rather self-conscious about being overweight. My staff though reassured me that jeans always fit tighter when you first buy them. Besides, though I’m overweight, at least I still have the exact same size I had about six years ago when I ordered my current favorite jeans, for which the new ones are a replacement. This means I’m not gaining weight.

Word of the Week linky

#WeekendCoffeeShare (March 19, 2021)

I am once again early at least for me with my #WeekendCoffeeShare post. It’s right between my dinner and my evening coffee now, but I can make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still having a cold. It’s a lot better than it was last week, but I’m still sniffy. This morning, I had a bad cough, but that seems to be gone now.

I am so glad though that it’s not COVID. This afternoon, I was informed that another home within my care facility is in isolation due to a client having tested positive for COVID. This does worry me a bit, since that client must’ve contracted the virus after being fully vaccinated. The staff do try to reassure me though.

If we were having coffee, I’d share that, now that I’m feeling a lot better cold-wise, I picked up the walking habit again. I managed to reach my goal of 10K steps both yesterday and today.

I did fall on my knee today while walking. Thankfully, I just suffered a slight scrape to the skin.

If we were having coffee, I would tell you that yesterday marked one year since the day center closed due to lockdown. A staff and one of my fellow clients made cheesecake to celebrate. Yummy!

A photo of me in front of the cheesecake

If we were having coffee, I would share about some changes to my care. First, I have a new assigned staff. She isn’t new to me or the home, just new to being my primary support worker. My former assigned staff is in college getting her nursing degree and was a bit too busy to have me in addition to two other clients to be assigned to. I really like my new assigned staff.

However, I was briefly triggered too. After all, my new assigned staff is really involved with my care and I worried she might get too attached and then have to step back. I thought this might’ve happened to my old assigned staff, but they both reassured me this isn’t the case.

Also, my one-on-one got extended with half an hour each day as of today. This might not seem much, but it prevents me having to deal with too many staff changes. After all, in the old situation, I’d have day activities till 4PM, then have to rely on the regular evening shift for half an hour before my one-on-one comes on. Now I’ll have that half an hour covered by one-on-one too. I’ll still have some time without one-on-one in the evenings and on week-ends in the afternoon, but that’s totally okay.

If we were having coffee, lastly I would share that my husband plans on visiting me briefly tomorrow. That is, if my cold isn’t too bad. We’re planning on going to a fast food chain drive-through.

How are you all doing?

#WeekendCoffeeShare (March 12, 2021)

And this time I’m extremely early with my #WeekendCoffeeShare. This week was rather eventful, especially the last couple of days. I just had my afternoon coffee today. You can probably get a cup of coffee, tea or a soft drink from the staff, but I’m so glad this meeting is actually virtual.

After all, if we were having coffee, first I’d share that I’m in room-based isolation. I started having a sore throat yesterday, but wasn’t sure it was the fact that I’d just had a screaming fit or it was actually a symptom of illness. The staff on shift yesterday tried to reassure me. Today though, I woke up very sniffy. I warned the staff, but at first she wasn’t concerned this time either. After she talked to a colleague though, I had to be in room-based isolation. The staff are now wearing protective clothing when entering my room. I’m usually in my room anyway when not walking. For this reason, if I do have COVID, it’s unlikely the other clients will have caught it too, at least from me. The staff though, well, they’ve definitely been at risk.

Thankfully, one of my home’s staff is one of my facility’s appointed testers. She swabbed me right this morning and the test should be at the lab right now. Please all pray that it’ll come back negative.

As for how I’m feeling, well, I’m okay. I’m a little sick to my stomach in addition to the cold symptoms, but overall it’s manageable. I don’t have a fever and my oxygen saturation was normal too.

If we were having coffee, then I’d tell you that I didn’t have as good a walking week this week as I had last week. The reason is that, besides not being allowed out today, I wasn’t allowed outside of the home on Tuesday either. Another client had to be tested for COVID. Thankfully, his test came back negative. I heard this the next morning, but today the staff told me they’d been informed already Tuesday evening at 10PM. I asked the staff to wake me up if this happens with my test too (only if it’s negative).

If we were having coffee, I would share that I had a really productive appointment with my psychiatric nurse practitioner yesterday. The staff who’d seen the PTSD video with me last week, accompanied me. Together, we were able to explain my continuing issues with hypervigilance, flashbacks and emotional dysregulation. I was able to explain about some of my traumas, including traumatic experiences within the psychiatric system. My nurse practitioner was able to validate me from his own perspective as a former psych hospital nurse.

If we were having coffee, lastly I would share that I made a coconut-mango smoothie this morning. It didn’t taste as good as it could have and I’m not sure whether to blame my cold symptoms or the chunks of coconut that weren’t properly blended.

What’s been going on in your life?

#WeekendCoffeeShare (March 7, 2021)

Okay, I’m so very late with my #WeekendCoffeeShare post for this week. Sorry! I was in Lobith yesterday and, though I returned already before noon today, I really didn’t find the time to write. I have so many things I want to write about and yet none come out clearly onto the screen. So let me just ramble. There might still be coffee here or you can grab a soft drink. Let’s chat.

If we were having coffee, I would tell you that I’m still struggling with hypervigilance and emotional flashbacks. If anyone is familiar with complex PTSD, I’d love to know your tips for dealing with these. I mean, I’m constantly on high alert and on the edge of flight.

It doesn’t help that I have no idea what triggered me. I mean, could it still be the dentist’s appointment at the main institution last Tuesday? I’m pretty sure that’s not it. In any case, I’m trying to cope the best I can.

If we were having coffee, I’d share that, on Friday, I showed a staff a case video from the Center for Consultation and Expertise on a woman with severe (complex) PTSD. It helped clarify some of the issues I’m facing.

If we were having coffee, I’d share that I had a bit of a meltdown when I came back to the care facility from Lobith early this afternoon. I wasn’t happy about the student staff doing my one-on-one this evening. Thankfully though, the staff reassured me that the student or I could call for another staff if needed. It wasn’t needed ultimately.

If we were having coffee, I’d then try to lighten the mood by talking about the weather. It’s cold here for March, with tempts dropping below freezing at night. Still, it’s quite sunny. The weather forecast predicts rain for all of the upcoming week though.

If we were having coffee, I’d share about my husband’s great chicken wraps that he’d made me yesterday. They were especially great with tabasco sauce in them.

If we were having coffee, lastly, I would proudly announce that I got in over 10K steps five days in the past week and over 12K steps on three of those. Today and yesterday, I didn’t do so well, but I still got in over 5K steps each day. That’s what my husband says the scientific community has calculated as the real recommended minimum step count each day. My husband said the 10K mark was made up by the inventor of the activity tracker. Regardless, I did average over 10K steps over the past seven days. Unfortunately, my sister still beat me on Fitbit. Oh well.

What’s been going on in your life?

A Very Intense Tuesday

Wowah, it’s been quite the day! I awoke at 8AM from a nightmare. Thankfully it wasn’t about my current care facility. I got weighed in. Thankfully, despite all the treats the staff who left us left behind, I’d only gained 200 grams.

I then got dressed, got breakfast and then read some. When my day activities staff came, she said the hairdresser was here. Like I said last week, hair salons are allowed to open again, though I overheard a staff say this isn’t until tomorrow. Oh well. I don’t go to the hairdresser each time she visits the care facility, so wasn’t sure I’d go this time, especially at such short notice. I eventually decided to go anyway and she cut about 5cm off my hair.

Then I went for a walk. Once back home, I had to eat, because I’d have to leave for the dentist at noon. I wouldn’t have my appt till 1PM, but it’s about a 45-minute drive to the care agency’s main institution, where the dentist is.

The staff had only told me of my dentist’s appt yesterday, presumably so I wouldn’t worry. I didn’t really, but my anxiety went through the roof once the dentist was doing his job, despite my having taken a PRN Seroquel to calm my nerves. It wasn’t noticeable to the staff, as I practically froze.

I had to have two cavities filled. Both were underneath an existing filling. Despite the topical anesthetic, it did hurt a little. To be honest, one of the teeth still hurts. I also got some protecctive layer over one of my other teeth, which had receding gums and for this reason the root had become exposed. That thankfully didn’t hurt.

Once I was back at the care facility, I tried to rest, but couldn’t. The anesthetic was wearing off and it hurt pretty bad. I decided to do some reading. Then the orthopedic shoemaker visited. He had tried to widen my shoes, so that my AFO (ankle foot orthosis) and arch support both fit into it and I would still be able to get my foot into the shoe. It worked, so now I can start practising walking with my AFO in. In fact, I’m pretty sure I won’t have to practise, as the discomfort is already manageable.

Once the shoemaker was gone, it was time to have dinner. I then had a bit of a meltdown over dessert, or maybe because of the reason it was just a spoiled tantrum. I eventually calmed down though and was able to enjoy the rest of the evening.

I finally gave in and got myself a membership to the International Association for Journal Writing (IAJW). I was a member some years ago, but at the time rarely used the member benefits. Part of the reason is that I didn’t know how to work Zoom and the get-togethers are on there. I still don’t know how to use it, but I think I’ll learn quickly enough.

Now it’s past 8:30PM. I’m not tired yet, but maybe I should have an early night anyway. Tomorrow, my community psychiatric nurse will be here at 11AM. That should go okay. Overall, I’m doing pretty well.