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 Multitude of Musings 
Dear Astrid,
Your struggles are heart wrenching. Your attitude is beautiful. I find reading your posts a lesson in humility and measure. Keep sharing and know that you make a difference.
Blessings,
Susan
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Thank you so very much for saying that. That means a lot. 💜
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I’m so sorry you’ve been struggling with so much anxiety and had a crisis again. I really hope you’ll be able to get some medication to help with that a bit.
I can imagine how scary that blinding experience must have been for you, being so sudden, and even if you know that you may likely lose your residual vision I guess this is the kind of thing people are never ready for whenever it comes.
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Thank you so very much for your supportive words. I am so grateful my vision returned eventually, yet this experience was still scary.
As for my anxiety, it’s probably related to the fear of abandonment, which is a major part of my C-PTSD. Still, it causes major unrest particularly at night.
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I guess it makes sense that such a fear like this would particularly creep out at night when you’re alone, plus anxieties generally like night time more.
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That makes sense. Another possible reason is the fact that the night staff isn’t in my home by default. There is a sleepover staff who sleeps across the entrance to my home, but when I was in crisis a few weeks back, I banged on my home’s front door (my home is locked to prevent me eloping at night) hoping to wake them, but to no avail. My door sensor which alerts the staff when I leave my room, did get set to a higher prirority level because of that crisis though.
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Oh yeah, I get how that could be challenging for you that the staff aren’t available directly in your house, especially given that situation when you didn’t manage to wake them up, that could easily make such a fear worse I believe.
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It did make me much more anxious indeed. Thankfully, I told my staff and they made sure the night staff know that when I press the call button or leave my room, it’s really important that they come.
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Keeping my fingers crossed that the nurse practitioner can help with your meds.
The walk in the woods sounds like a nice way to pass the time. Especially as you got to spend it with your husband. Glad to hear that you didn’t encounter a wolf whilst there!
I hope you have the loveliest week ahead. ❤️ #MMBC
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Thank you so much. Walking in the woods definitely was a great activity and I’m so glad we indeed didn’t encounter the wolf.
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One of Seroquel’s side effects is glaucoma, if I remember correctly. It doesn’t bother me, but I have to get my eyes checked regularly because I’ve been on it for years. Good luck to you.
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Oh, thanks for that. I haven’t been on Seroquel for long and the main reason I’m worried about possible glaucoma is because it’s a possible complication from my eye condition.
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Sorry to hear you had a scary experience and nasty headache. I hope your weekend is going well and you have a great week ahead. #WeekendCoffeeShare
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Thank you so much. 🙂 Hope you have a great week too.
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I’m sorry you’ve had some challenges going on but we’re proud of how you’re handling them.
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Thank you! 🙂
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Coming from immediately reading your post on Colour Vision I think I better understand your scary experience… I am glad that your vision eventually returned.
Wolf Woods!!! Well that makes for a thrilling story…. Here’s to finding those seemingly lil things that keep us balanced.
~B
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Thank you. Yes, I’m so happy my vision eventually returned. As for the wolf woods, only one wolf has been seen in those woods so far, but I’m pretty sure there are more.
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Dear Astrid.
Thank you for visiting my blog on O! Cloudsmen day.
I’m so glad you found me because your visit guided me to your blog.
I’ll be reading more of your offerings to get to know your world better. For now, I’d like to say, I enjoyed the no-coffee, coffee meet:)
Have a wonderful day.
Arti
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Thank you for commenting. 🙂 Have a nice week.
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Hi Astrid,
Sorry for being so late this week. It was a busy weekend here.
Wow, scary stuff regarding your sight changes. It ‘s good that you’re having things checked out. I hope they find something that explains it all and maybe even a patch back to what you lost.
Also, it does not surprise me at all that your blog post touch so many people. You are bright, articulate and explain things from a perspective that few ever to hear. I look forward to hearing from you each week for this exact reason.
I hope you have a great week coming.
Blessings.
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Hi Gary, thanks for commenting. Did I overlook it or didn’t you write a coffee share post this week?
I don’t expect any eye doctor to be able to restore even a tiny bit of my lost vision. I had cataract surgery for this and it gave me only just a little more light perception. My condition causes retinal detachments, which cannot be repaired except when detected real early. My eyesight was pretty much given up on when I was eight and I’m only lucky that the eye doc at the university hospital was even willing to try cataract surgery on me with how severely damaged my retina is. That being said, I do appreciate your sympathy.
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Ooh custard cupcakes sound very yummy! The weather here has been nice and sunny too – but also cold at night. Sorry to hear that you’ve been struggling with increasing anxiety – hope that the talk with your nurse practitioner will help to improve things with this for you. I can imagine that losing your light perception was very scary. Hope that it was just a one-off but sounds like a good idea to get your eye pressure checked out. Glad you didn’t encounter the wolf on your walk with your husband and that your new marshmallow tip on your white cane is working well for you. #MMBC
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Thank you so much for your kind words. Yes, I really do hope my losing my light perception was a one-off experience. My talk with my nurse practitioner went well. I’m so happy your weather is good too.
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wow. A wolf, thats kinda scary! I’m glad you got a new tip for your cane! And that your blog is really busy! Way to go! ❤
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Thanks! Yes, the wolf kind of scares me too.
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