#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?

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.

A Really Validating Psychiatrist’s Appt

Today, we had our first appointment with the psychiatrist from the local mental health team. To my surprise, our nurse practitioner came to get us out of the waiting room. He attended the appt too though and looking back, it was really good.

I started to explain that our PRN lorazepam hardly worked at all. The psychiatrist seemed to think that’s a bit odd. We ultimately came to the conclusion that it does do something but the anxiolytic effect causes more emotions to surface.

The psychiatrist then started to talk about the “pieces”, as we call ourselves when talking to mental health professionals. She asked whether I’d ever been in touch with people with similar experiences. This utterly surprised me, as our nurse practitioner had said comparing our experience with others’ is useless. I felt able to share that I’d Googled my symptoms and come across dissociation and had met other people with similar symptoms that way. I did say I don’t really want a diagnosis.

The psychiatrist asked whether each of us experiences the effects of medication differently. Thankfully not, but some are more willing to take medication and to let it work than others. She explained that the mind is stronger than a pill, so if we don’t want to calm down, no medication can make us.

She ended up prescribing us a low dose of quetiapine (Seroquel). This is an antipsychotic when used at higher doses (like in the 100s of mg) but has a greater calming effect when prescribed at lower doses. She told me she had learned how this works – why its calming effect is greater at lower doses -, but had forgotten. I said I’d find out about it someday and let her know.

At one point, I started zoning out. The psychiatrist as well as the care staff who attended, noticed. I honestly had no idea other people, let alone virtual strangers like the psychiatrist, could tell if I didn’t say I was feeling out of it. The psychiatrist told me it’s a coping mechanism and fighting it will only make it last longer. I will work with my nurse practitioner on ways of coping with it when alone.

I also mentioned compulsively looking up things that trigger us online. Like, I now remember yesterday someone was reading a newspaper story about Russian opposition leader Navalny’s poisoning. Then one of the littles got triggered into thinking someone had put poison in her underwear too. The same happens on a more severe scale with us compulsively looking at other places to live. Our nurse practitioner said he’s definitely going to remember this for our upcoming appts.

Looking back, I’m so glad we had this appointment and also so glad our nurse practitioner attended too. He had seemed a bit dismissive when we had an appointment on Thursday, but we were able to express that via E-mail too.

Clarissa