#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?

I Want to Feel Better #SoCS

SoCS Badge 2019-2020

I want to feel better. Or maybe I need to feel better. No, that’s not correct. Feeling normal mentally may be a want, but I cannot need to feel it everyday.

I’ve been really in a depressed funk over the past week. Maybe, like I said on Thursday, it’s just that I was feeling so well over the past six weeks or so. Now that it’s passed, at least for now, I feel frustrated and depressed. I feel tired too. I’ve been lying in bed most of the morning and part of the afternoon today.

So what am I going to do about it? I’m writing now at least. That’s better than lying in bed. I still at least have some writing mojo left. In this sense, it helps that this writing exercise is stream of consciousness so that I don’t need to worry about structure.

What else can I do? I could be forcing myself to stay out of bed, but this is hard especially on weekends. So I’m not doing that.

I will be going for daily walks unless the staff have no time to take me on a walk all day (which is rare). Then, I will dance in my room for at least 15 minutes and/or go on the elliptical.

I will continue to write everyday. If it isn’t “blog-worthy”, so be it, but I’ll at least try.

I will meditate. It doesn’t need to be a long guided meditation or anything. A few minutes is enough. But I’ll make sure to incorporate mindfulness into my day.

Hopefully, committing to these will help me keep depression at bay. And if it doesn’t, then at least I’ll know that I’ve tried.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “want”.

Fatigue (For Lack of a Better Word)

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.