#WeekendCoffeeShare (May 8, 2021)

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

#WeekendCoffeeShare (May 2, 2021)

Hi everyone on this first Sunday of May. I still honestly can’t believe it’s May already, but it is. Today I’m joining in with #WeekendCoffeeShare. It’s still early in the afternoon, but I didn’t want to be very late with my submission. I’m having my afternoon coffee in a bit, so if you’d like one too, that’s okay. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d tell you that this week was a mixed bag weather-wise. We’ve had sunshine, clouds, wind and rain. The temperatures are still below normal though.

If we were having coffee, I’d be excited to share that, on Tuesday, I went to a playground in a neighboring village with my one-on-one staff. It was King’s Day, so we had the day off from day activities, but I had a lot of fun anyway. The playground had a trampoline, a seesaw and several swings. My husband wondered why I had my shoes on while jumping on the trampoline, but this was apparently allowed.

Me on the trampoline.

If we were having coffee, I’d also share that, on Thursday, I revived my Instagram account. That is, I had posted exactly one photo some four years ago and had deleted that a few months back. On Thursday, as you can see, I uploaded a photo of a soap I’d made with my one-on-one last week. I am not yet certain I will really be posting to my Instagram more often, as I don’t think my pics are really Instagram-worthy, but well. I had fun making the soap and wanted to show it somewhere.

Speaking of soap making though, I’m planning on making a lip balm real soon. I also found out early this week that I will be able to make shampoo bars after all, since it doesn’t require saponification with lye. Now the stuff that is used to make shampoo, is quite concentrated too, but I think I may give it a try after all.

If we were having coffee, I would tell you that the physical therapist once again urged me to wear my AFO after all. It still hurts and, to be honest, I feel as though she dismisses my pain. Then again, I understand the need for the AFO. Let’s just hope my semi-orthopedic shoes will be here soon. I doubt it though.

If we were having coffee, I’d tell you that the manager came by on Thursday to inform me that the opening for a new staff had finally been filled. The new staff will start orienting at my home tomorrow. At first, she will not be working with me, but eventually she might.

If we were having coffee, lastly I would share that I spent the weekend in Lobith with my husband. We had delicious meatballs for dinner yesterday. We also had rice and cucumber. In the evening, my husband gave me a picky eater test he’d found online to see if I had a high score. I scored eleven points, he scored six. Then again, I probably was a little strict on myself, as I said for example that I wouldn’t eat celery. This morning, it was in a salad we had for breakfast and, while I didn’t love it, I didn’t hate it either. There are only a few foods I definitely will not eat. That being said though, the list of foods I’d rather avoid, is quite long.

How have you been?

#WeekendCoffeeShare (April 24, 2021)

Hi everyone! After writing this afternoon’s quick post, I felt I really wanted to write another post today, so I’m joining #WeekendCoffeeShare on Saturday. I’m pretty sure I’ll have something else to share with you tomorrow. Either that or I can take the day off blogging for a change. Anyway, I just had my soft drink and chips for this evening, but there is no doubt still some left. Let’s have a drink and let’s catch up.

If we were having coffee, first, as usual, I’d make smalltalk about the weather. It’s mostly been sunny and dry, but windy and quite chilly. How is yours?

If we were having coffee, I would tell you that I’ve been struggling with foot pain when walking for a while now. I don’t know why, but it seems worse when I wear my AFO (ankle foot orthosis). The physical therapist – not my usual one, since she was off sick – came by yesterday. I can’t remember all that she said, but it came down to my having muscle tension in my feet or something. Massaging my foot before putting on the AFO may work. Other than that, she basically told me that the AFO takes some getting used to. I interpreted this to mean I just need to push through for a bit. That, I think, makes little sense, since I’ve had the AFO for at least a month, probably two, and was fine most of that time.

I was pretty frustrated and depressed when I could barely walk with the AFO on yesterday evening. I immediately catastrophized that I may as well get a wheelchair. Another possibility, and I know my staff don’t buy that one, is that I just need to lose weight. I do, but my staff don’t believe that’s causing my pain. Honestly, neither do I, as I’ve been a lot heavier in the past and then didn’t have issues with pain. My foot also does stand in a weird position when not forced into a 90-degree angle by my AFO. Well, I’m not wearing my AFO for now and we’ll see what will be next.

If we were having coffee, I’d share that on the walk without my AFO this evening, I heard a stork making that clattering sound storks do. We were near the neighborhood supermarket, so at first, my staff didn’t believe me and was convinced it was something else. Then she spotted a stork nest.

Stork

If we were having coffee, I would share that I’ve been reading a lot lately. Some of it involves me exploring the enneagram and other personality-related topics. I’ve also been reading a little on attachment styles and trauma. However, I’m also reading for enjoyment. I am currently reading the foster care memoir A Sister’s Shame by Maggie Hartley.

If we were having coffee, I’d also tell you that I’ve been writing a lot again. Of course, I’m still blogging everyday, but I’ve also picked up my journaling app, Day One, again, and am aiming to write at least a few sentences each day.

If we were having coffee, lastly I would share that I’m finally able to benefit fully from the YouVersion Bible App and Bible.com. I discovered the note-taking feature yesterday. Today, I finally downloaded the Common English Bible translation. This translation’s publishers require a valid E-mail address and I had initially signed up with my Apple ID and a hidden E-mail address. I thought it should be easy to add my actual E-mail address to the app, but not so. Turned out I also had an account, a different one, with my actual E-mail address. Thankfully, I was able to sort it out. I’m fully enjoying my Bible reading again.

What’s going on in your life?

#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?

#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?

#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?