#WeekendCoffeeShare (October 25, 2020)

It’s already late Sunday evening. I was up real early today, but still didn’t get to blog so far. Today, I’m joining in with #WeekendCoffeeShare. We may still have some coffee, although our official evening coffee break has passed. Otherwise, I can offer you green tea or water. Let’s have a drink and let’s catch up.

If we were having coffee, I would share that last week, I bought a new Fitbit Inspire 2. It’s pretty cool to be able to track not just my steps and distance walked, but also my minutes in active heart rate zones. I got more than twice the required number of minutes this week.

That being said, I’m already looking at someday buying myself an Apple Watch. I discovered just a few days after I’d purchased the Fitbit, that there’s a new Apple Watch SE that’s significantly cheaper (or should I say less expensive?) than the regular one. I’m really hoping I’ll be able to buy that one someday.

If we were having coffee, I would share that I had a health check on Tuesday. Like I said, it showed that my blood pressure was somewhat high and of course I’m significantly overweight.

I did find out on Friday that my blood pressure is actually pretty normal when resting, ie. just after waking up. It was 115 over 75 then, but rose to 129 over 91 after I had showered and gotten dressed. I have no clue of the significance of this, but my staff E-mailed my GP about it, as the nurse from the health check-up had recommended.

If we were having coffee, I would tell you how frustrated I was when discussing my health check with my husband. He wanted me to go on a diet. I want that too, but it’s hard for me to follow through especially long-term and the staff refuse to enforce a healthy lifestyle.

After a sleepless night and some frustrated discussions with my staff, they talked to the behavior specialist. She recommended we make a food plan together, my staff and me. Then all of us know what I’m supposed to eat and not eat and the staff can redirect me when I want to overeat. So far, it’s going okay’ish. That is, the staff have still occasionally offered me food I’m not supposed to eat at that moment and then I struggled to refuse it. I did eventually talk to the staff about it and try to make up for my bad choices later on. I’ve not yet had a moment when I requested food I wasn’t supposed to eat, which according to my food plan would require the staff to tell me it’s not wise and to offer an alternative.

If we were having coffee, I would tell you that my husband came by for a quick visit today to take me on a walk. That was fun.

If we were having coffee, I’d tell you I finally updated my iPhone to iOS 14. I hadn’t expected iOS 14.1, which came out a few days ago, to solve any of the many accessibility bugs the original iOS 14 had come with. After all, the release notes didn’t mention VoiceOver at all. To be sure, I asked on a Dutch VoiceOver users group about it and got a reply from the most critical iPhone user on the list saying that the update had fixed most of the bugs. Practically all other list members had already updated, claiming that most bugs can be circumvened. I didn’t want to take the risk, but I do believe this particular member. So far, it’s all pretty good. I am having a play around with VoiceOver recognition, which describes images. It’s pretty cool so far.

What have you been up to?

Health Check

Yesterday, I had a physical health check-up at the mental health agency. Because of the risks psychiatric medications cause for your health, they are required to do this every year. Oh well, the nurse told me not to expect another check-up until sometime in 2022.

I had to have bloodwork done to check for vitamin levels, cholesterol, glucose, etc. Everything was within the normal range except for my white blood cell count, which was slightly elevated. That’s probably because I had a cold about four weeks ago. At first, I was tempted to say “No” when the nurse asked whether I’d had a cold because of the coronavirus scare that’d cause. It turned out it explained my high white blood cell count though.

There were also two things that were low, which might indicate anemia. My hemoglobin though was normal and I’m not very tired lately. This is probably nothing to worry about.

Thankfully, my cholesterol, blood sugar, etc. were all normal. I know I run a risk of developing type 2 diabetes because of my weight. The nurse didn’t make a big point about my being obese though. She did chehck my blood pressure. My diastolic blood pressure was 93, which is considered hypertensive. My systolic blood pressure was also a bit high, namely 132, but that wasn’t too worrisome.

The nurse recommended we measure my blood pressure a couple of times over the next few days. It was 126 over 99 this morning. The latter number really worried me.

Right now, I feel pretty awful. My husband is also worried. He asked me to really “lose weight and relax”. I told him that both is not likely possible, but I’d try to at least lose weight. He asked me what options the care facility has to force me to go on a diet. Not many, I think. In fact, the staff are less worried than I am. I am likely mostly myself responsible for restricting my diet.

After I explained my and my husband’s concerns to my assigned staff, she did agree to E-mail the dietitian and behavior specialist to see if I can be put on a diet. Then again, if I nag for food, they say they’re more or less required to give in as I’m a voluntary admission. I don’t think that’s entirely true especially with the new Care and Force Act, but I think the staff feel less able to resist someone verbally pestering them for food versus someone who screams for it without actually asking, as they are non-verbal. After all, at least one of my fellow clients is on a diet and the staff flat out refuse to give her food she isn’t supposed to eat.

I feel really torn. On the one hand, I want to believe the nurse from the health check that losing weight shouldn’t be an absolute top priority, because, well, I don’t want to give up chips and sausages on week-ends. On the other hand, I absolutely don’t want to have to add yet another medication to my regimen. I originally said I wanted to avoid blood thinners at all cost. Then I found out blood thinners aren’t the same as blood pressure medication. Still, I want to avoid needing to add a blood pressure medication too, especially since, once on any medication, it’s hard to get off.

Of course, I want to avoid getting a heart attack or other cardiovascular disease for as long as possible. This means I really need to go on a diet. I’ll start with eating bread instead of cereal for breakfast. It’s hard, but I’m going to do it.

#WeekendCoffeeShare (October 11, 2020)

It’s Sunday and I’m in definite need of some coffee. For this reason, I’m joining in with #WeekendCoffeeShare. It’s not time for my evening coffee yet, but maybe I can enjoy a virtual cuppa.

If we were having coffee, I’d share that the weather is gloomy. It’s been raining almost the entire day and it’s cold enough that I could use my winter coat.

If we were having coffee, I would tell you that I’m struggling quite a bit. Yesterday I landed in crisis. I didn’t sleep all night and was still feeling very tense by this morning. A walk didn’t even help, because I felt cold and was very tired and overloaded.

I am also struggling with what to tell my husband. The crisis was quite bad and I really want to be open to my husband. However, I fear he’s going to be angry with me for it, because in other places, this could’ve led to me being kicked out. In fact, I’m still worried that the staff are going to decide to kick me out after all.

It makes me feel sad that I, being of above-average IQ, am expected to make my own decisions regarding this stuff and make sure my family is informed.

I mean, of course it has its pros that I’m intelligent. If I had an intellectual disability, I wouldn’t be able to blog, for instance. I also wouldn’t have my husband. However, this discrepancy between my IQ and my ability to cope emotionally, is weighing me down quite a bit.

If we were having coffee, I would tell you that, as unlikely as it may seem now, the rest of the week was pretty good. I made some soap and experimented with baking soda modeling clay. I removed some of the figures from their molds today, but I think they hadn’t fully hardened, as they were still pretty brittle.

If we were having coffee, I would share that I’ve been loving browsing Amazon’s Kindle collection for books to get. I don’t want to buy them yet, but I did download a few free books.

I also finally got Listify on Apple Books. This is a book of journaling prompts (yes, again!) but most are list-based.

What have you been up to lately?

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

It’s Just Another Manic Monday #Blogtober20

Today’s prompt for #Blogtober20 is “Manic Monday” and how appropriate this is today! One of my day activities staff celebrated 25 years working for this care agency. For this reason, the manager and a few of her coworkers from the day center came round for coffee and cake. You see, the day center is still not operating as usual due to COVID-19 restrictions and this staff usually provides day activities at my home now. She did visit her normal day activities group for a bit in the afternoon, where currently another home’s clients do day activities.

Anyway, due to the manager and some other staff coming by for a visit, it was really hectic here this morning. I did enjoy a cup of coffee and some cheesecake, but I was really overloaded most of the time.

The staff had really done her best to make us feel festive. In addition to the cheesecake, we got Airfryer snacks for lunch and candy bars with our afternoon coffee. Another staff had also decorated the home with photos of this staff from throughout her career.

Thankfully, I managed a mid-morning walk after the manic events of the manager’s speech and coffee with cheesecake. That went well, although my accompanying staff’s chatter did get a bit on my nerves.

I spent the afternoon so far relaxing in my room or having coffee with a candy bar. I still need to make a present for this staff, like a soap, but that can wait and of course isn’t a requirement. I did after all contribute to the home’s gift to this staff.

This evening, I intend on checking other blogs and just chilling out in my room. If it’s not raining, I might go for a walk after dinner. I may also read a little. Right now, I’m reading a Dutch book chronicling a year in the life of an obstetrician.

Normally, my Mondays aren’t as manic as today. In fact, I like the hustle and bustle of it, compared to boring Sundays. After all, I spend a lot of my Sundays in bed. On Mondays, day activities start back up, so I normally go for a walk or two and/or make a soap or some other craft or DIY project.

Of course, compared to parents or people who work, I’m not as busy even on a Monday. I mean, I still get more than enough time to relax and even the activities I do during the day, don’t feel like chores or work. I do, however, feel easily overloaded by lots of stimulation, so it’s exactly right the way things are right now.

#Blogtober20

#WeekendCoffeeShare (September 27, 2020)

It’s pretty late in the evening already and I had a few gulps of wine. That isn’t a wise idea, as I normally literally never drink. It was one of my staff’s leaving party and the other staff dared me to drink to it. I only had one gulp of red wine and one gulp of white wine, but I was definitely feeling the effect. Call it placebo, I don’t care.

I’m joining in with #WeekendCoffeeShare. The staff who is retiring took the remaining wine home with her, so we don’t have that now. We do have several types of soft drinks and a type of orange-peach juice. We also, of course, have coffee or tea. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that, thankfully, all clients who had cold symptoms last week, tested negative for coronavirus and are on the mend now. I am still a bit sniffy but other than that feel fine.

If we were having coffee, I would share that now, unfortunately, my husband is sick. For this reason, I couldn’t see him over this week-end again. I hope he’s better by next week, both for his sake and mine.

If we were having coffee, I would tell you that I made an experimental soap yesterday. I made it with real coffee grounds and espresso fragrance oil. I was planning on making a soap for the staff who’s retiring, but didn’t have time to make one for myself to try out first. Here’s hoping the staff will like it.

If we were having coffee, I would then go on and on about my new essential oil diffuser and my new oils to go in it. I had a blend I made myself in it yesterday, which I call lime love. It uses lime, lavender and ylang ylang essential oils.

If we were having coffee, I would also share how happy I am with the weighted blanket I’m allowed to try out for two weeks. Last night, I didn’t sleep well due to once again hyperfocusing on a project – my umpteenth attempt at blogging in Dutch. However, I did feel more rested than usual when I woke up.

Lastly, if we were having coffee, I wouldn’t have coffee at all, as I’m wanting to go to bed soon. I love lying in bed with my essential oil diffuser on with a relaxing blend in it, some soothing music in the background and my weighted blanket over me.

What’s been going on in your life lately?

Negative

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

#WeekendCoffeeShare (September 20, 2020)

It’s Sunday and I want to tell you more about my life right now. For this reason, I’m joining in with #WeekendCoffeeShare. The image above is taken on a bridge over the local channel. I’m not there right now and in fact did not go out for a walk today at all. I did drink coffee. And pure green tea – not the matcha powder type. If you want any, you can grab some. There’s also cold water in the fridge. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that it was my and my husband’s ninth wedding anniversary yesterday. I wasn’t able to visit him though, because I have a cold. At first I wasn’t sure whether just a cold means I need to stay home, but my husband sent me the COVID-19 FAQ from the health authorities that said I had to. Strangely, a staff who has a cold slightly milder than mine, was working this morning anyway.

If we were having coffee, I’d tell you that I did send my husband a card with a photo of me in it. He appreciated it.

If we were having coffee, I’d tell you that I just got interrupted while writing this post by a staff to tell me several other clients show cold symptoms. I already knew this, but it means we’re from now on being cared for in our rooms. We’ll get tested for COVID-19 as soon as possible, maybe today but I don’t think so.

If we were having coffee, I’d share that I am loving learning more about essential oils and soap making. I downloaded three books on the topic of essential oils from Bookshare yesterday. Of course, since I don’t have a microwave or stove in my room, I won’t be able to make soap while we’re still being isolated. However, I do have my essential oil diffuser and oils here, so I can make my own diffuser blends.

If we were having coffee, I would tell you that I requested my staff bring me some coffee cups so that I can make Senseo coffee in my room. I mean, staff do come here to deliver our meals and help us whenever we need it, but they do need to wear protective clothing when entering our rooms. I think that’d be a bit annoying for them if they had to bring me coffee.

What else is new? A lot really, but all seems futile now that we’re in room quarantine. For those who pray or send positive vibes, do get those prayers/healing vibes/etc. coming our way.

What have you been up to lately?

A Sunny Monday

Hi all on this beautiful Monday! It’s mid-September but the temperatures rose to 29°C here anyway. Tomorrow we’re supposed to get even hotter weather, with temperatures rising to 34°C in some places in the south of the country.

I went for three walks today. In the morning, my regular day activities staff was in a meeting, so a substitute came. She took me on a long’ish walk. I think we took over half an hour. Then in the afternoon, I took my usual 20-minute walk when the regular staff had returned.

I was originally planning on taking some pictures, but ultimately I didn’t really have the courage. That little voice that says as a blind person I shouldn’t be interested in visual stuff like photographs, was pretty prominent in my mind.

In the evening, I took another longer walk. The staff who took me pointed out that there were some cows real close. I asked her to take a picture with my phone. Both Seeing AI and Envision, my two image description tools on my phone, didn’t get beyond calling it livestock, but my iPhone itself did identify cows in the picture.

Ultimately, I took over 12K steps so far today. This gives me an excuse to take it easy tomorrow, when it’s going to be so hot. I might make a soap then or maybe I’ll try out the matcha green tea in a smoothie. I doubt I’m going to try it as regular tea, as I’ve heard it tastes pretty bitter then.

I may also visit the sensory garden attached to the day center. I went there some weeks ago and loved smelling the herbs. There’s a birdcage there too, although at the time the birds didn’t make a sound.

I may try to take some pictures myself. What do you think? As a blind person, should I be interested in pictures, and if so, is it worth it if I try to take them myself? I mean, would you like to see more pictures on this blog even if they’re not good?

The Ordinary Moments

#WeekendCoffeeShare (September 6, 2020)

Welcome to another Sunday and another edition of my #WeekendCoffeeShare. It’s past 8PM here, so I’ve had all my coffee for today. Still, if you’d like a virtual cuppa, that’s fine with me. We also have two flavors of Crystal Clear soft drink, neither of which I like, in the fridge, as well as my favorite Dubbelfrisss: apple and peach. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still a bit tired. Like I said on Friday, I was sick on Thursday with diarrhea, nausea and a low-grade fever. Thankfully, the fever was gone by Thursday evening and so far hasn’t returned (yes, I did get it checked). However, I’m still very tired. I wasn’t yesterday. It could be a delayed case of sleep deprivation, as Friday night I got only a few hours of sleep.

If we were having coffee, I would share that yesterday, we had another online meeting of the cerebral palsy charity’s chapter in my province. It wasn’t as eye-opening as the one we had in July, but it definitely was interesting. We discussed whether COVID-19 has a more severe impact on CP folk than on the general population – the consensus was that, unless you have co-occurring breathing issues, it doesn’t. Then we discussed fear of suffocating and the reasons for our CP. Some of the participants were oxygen-deprived at birth. Some were not (like me) and some had no idea. From there, we discussed whether it’s useful to have access to your birth-related medical information, since CP occurs before, during or shortly after birth. Overall, I loved connecting to other people. In October, the CP charity will organize some online activities in place of the CP day that would’ve taken place on October 31 if not for the coronavirus crisis.

If we were having coffee, I would tell you that I miss my husband. Like I said on Friday, he couldn’t take the risk of coming by. I really hope we’ll be able to see each other next week.

If we were having coffee, I would tell you that there were quite a few new staff, student staff and people orienting at becoming staff at my home this past week. It was a little chaotic sometimes, because the staff need to explain a lot to these new people.

If we were having coffee, I would share that I had ice cream for dessert yesterday and today. There was hardly any custard and no flavored yoghurt, so I used that as an excuse. I could’ve eaten plain yoghurt of course, but didn’t. I loved the ice cream!

What’s been going on in your life?