#WeekendCoffeeShare (February 13, 2021)

Hi and welcome to another #WeekendCoffeeShare post. I just had my soft drink of Dubbelfrisss and some Pringles for today. However, I can make you a cup of Senseo coffee if you’d like. I can also make you tea. A staff brought me some green tea without additional flavoring earlier this week, which I’m so grateful for. I love this kind of tea! Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that it’s still pretty white outside here. The below picture was taken on Thursday, but not much of the snow has gone yet. That should change tomorrow, as temps are supposed to rise above zero.

A picture of me in the snow

If we were having coffee, I would tell you that I’m happy to report feeling much better than I was earlier in the week. Like I said yesterday, I had some worrying health symptoms on Monday and Tuesday that were probably attributable to constipation (and possibly some stress too). Like I mentioned, the doctor prescribed me magnesium tablets. I’m feeling much better now. Not yet completely normal, but almost so.

If we were having coffee, I’d tell you that I got a wonderful stuffed bear from my husband as an early Valentine’s Day present today. I gave him an airdry clay heart I’d made.

My husband paid me a quick visit at the care facility on his way back from buying a trailer for his car. The trailer is truly huge for one that’s behind a regular VW car!

If we were having coffee, I’d share that my support coordinator told me that I thankfully no longer need to tell the staff several days in advance when my husband is going to pick me up. The reason they so far required this, is my one-on-one support. However, my coordinator and the manager agreed that it’s possible for them to schedule the staffing regardless. This is a huge relief, as especially with COVID and all, it’s hard to plan ahead.

If we were having coffee, I would tell you that today, my one-on-one support staff took me to a farm with my care agency where we could see the horses, goats and rabbits. Unfortunately, they were eating, so they didn’t show me much attention. I didn’t take my phone with me, so no pictures. That will have to come next time.

If we were having coffee, lastly I would tell you I’ve done a lot of reading and book hoarding lately. I will have to do another reading wrap-up soon. Let me say for now that I’m totally inspired to read more SciFi. I totally love the escapism!

That being said, I’d also like to moan (probably for the third or fourth time) about the fact that Amazon doesn’t accept payment methods other than credit cards for their digital products. This is really annoying, as I don’t own a credit card. I really wish I could benefit from their Kindle deals, but apparently Amazon doesn’t want me buying anything there. Okay, I could still buy physical products, but what’s the point? We have Bol.com for that, and I want Kindle books! *Whines.* Okay, I can still get the free ones, but well.

What’s going on in your life?

#WeekendCoffeeShare (February 6, 2021)

Hi everyone on this windy Saturday! Welcome to my contribution to the #WeekendCoffeeShare. It’s past 8:30PM, so I’ve long had my last cup of coffee for the day. However, I still have cold water in the fridge, as well as several flavors of soft drinks. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week went by relatively smoothly. I did struggle a bit early in the week because I felt guilty that the one-on-one support I’ve been getting lately isn’t helping me as much as I’d like. The staff reassured me that things have just settled down and I shouldn’t expect an instant great improvement. Besides, in a way, I am doing better than I was.

If we were having coffee, I’d tell you that I got some wonderful new essential oils. I got lavandin (which is like lavender but milder), lemongrass, ginger, clary sage and white fir. I am so happy about being able to make some new diffuser blends. I’d totally expected to sleep like a log because of the clary sage, but I didn’t. That’s okay though.

If we were having coffee, I’d share that I also finally purchased a talking scale. That way, I can weigh myself each week at the same time rather than relying on when I remember to ask a staff to weigh me. The scale wasn’t too kind to me when I first stepped onto it.

If we were having coffee, I’d announce that I got my first shot of the COVID vaccine on Thursday. It hurt a little more than the flu shot had, but the pain was over within the hour.

If we were having coffee, I’d tell you that my husband didn’t visit me today. We already established on Thursday that I wouldn’t be going to Lobith this week, because of the heavy snow and wind that’s been forecasted for tonight. We’re supposed to get up to 30cm of snow with a possibility of snow dunes. I originally thought snow dunes were the ones that would be 30cm high, but my husband said they might be up to a meter or even two. I can’t really imagine we’ll get this much snow, but I know how quickly it can come down indeed. Looking back, my husband could’ve come by for a quick visit this afternoon.

If we were having coffee, lastly I’d share that I made banana bread with my one-on-one staff this evening. We used just eggs, bananas and oatmeal for the batter and then added nuts, cranberries, dates and raisins. The other staff didn’t like the nuts in it, but I loved it.

Banana Bread

What’s been going on in your life lately?

Five Years Ago #Write28Days

Welcome to day four in #Write28Days. Today, I am not going with the word prompt. It is “Make” and maybe I can make the prompt fit into my post somehow (pun intended). Not sure though. Instead, I picked one of Mama Kat’s Writer’s Workshop prompts. It asks us what, if we could give ourself a snapshot five years ago of what our life would be like now, it would look like and how we would’ve felt.

Five years ago, I still resided in the psychiatric hospital with the intention of leaving for my and my husband’s then home by my 30th birthday on June 27, 2016. I still trusted my mental health professionals to a degree and had at least some trust in my ability to live with my husband. The whole saga of my changing diagnosis, or diagnonsense as I called it, hadn’t happened yet.

I just checked my old blog for what I’d written in February of 2016. I admitted, in some posts, that I still struggled with the reality that I hadn’t fulfilled most of my childhood dreams and yet wasn’t a total failure, in that I’d be living with my husband. I didn’t use the word “failure”, but my writing certainly connotes that I should feel like a failure if I need residential care for the rest of my life. Which possiblity I held open to an extent, and which indeed came true.

I mean, I got kicked out of the psych hospital not by the summer of 2016, but by May of 2017. Then lived with my husband for nearly 2 1/2 years, until I was accepted into the care facility.

If I could give myself a snapshot of my life right now, it’d likely be of my room here at the care facility with my one-on-one staff in it. I might give myself an additional snapshot of my and my husband’s house in Lobith to convey that we’re still together.

Honestly, I have no idea how I’d have felt about these snapshots back then. I mean, four years ago is easier. Then I’d certainly have been elated at knowing I’d eventually end up in long-term care despite all the attempts my psych hospital staff took to prevent me getting the care I need. But in early 2016, I may not have seen this need.

Probably, the most likely emotion I’d have felt is mistrust. I mean, how could I possibly ever get the level of care I never even openly admitted I needed? I mean, I never asked for one-on-one, but got it anyway. How is it possible that people truly saw this? I can hardly believe it now, let alone five years ago.

Looking back at my life five years ago, however, makes me so intensely appreciative of the life I have now! I thank the Lord for sending my former support coordinator, the Center for Consultation and Expertise consultant and my current staff into my life, as well as the funding authority people in charge. Without these people, I honestly don’t know where I’d be right now.

Mama’s Losin’ It

New Normal

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

Things Can Only Go Up

Like I mentioned earlier in the week, on Sunday I was in a major crisis. On Monday, the manager came to reassure me that I wouldn’t be kicked out of the care facility. I wasn’t convinced though and got stuck on a comment that seemed to invalidate my need for more support.

On Tuesday and Wednesday, I cried my eyes out. I felt that there’s no place where I truly belong. It didn’t help that my husband said I experience a lot of internal stress so wherever I go, I’ll take that with me. I’m pretty sure he meant it in a more positive way than I took it. However, I took it to mean I’m too wicked and needy and stressed for this world.

On Tuesday, I started envisioning a place I belong and don’t feel pain. Until that point, I had always assumed there must be a better place for me out there within this world. This had led me to check the care agency’s profiles for other homes pretty much on a daily basis. As of last Tuesday though, this “better place” became more like the afterlife. It wasn’t that I wanted to die, but I wanted the intense pain to end.

On Wednesday, I cried for what seemed like forever. I was crying alone in my room and at one point had the sense of clarity to press the call button. There is this extra staff who normally helps out between 6PM and 8PM. She came into my room and said she’d stay with me for the entire two hours. I cried and talked and let all my feelings out.

At one point, this staff asked whether I’d heard of one-on-one support. I had, but asked her to clarify it anyway. She asked me whether that sounded like something I might benefit from. I finally overcame my intense shame and said “Yes”.

Yesterday, I started the day off pretty sad and had some crying fits throughout the day. At about 4:30PM, a staff came to soothe me and said that that evening, I could sign something to get me more help. I wasn’t sure what she meant. Turned out she meant a letter to the manager requesting more support for me.

My assigned staff wrote the letter, with my input, that evening and I signed it. Now of course we still need to wait for the manager’s response. She may also need to request extra funding for me from the authorities. Even though I’ve known about one-on-one support for almost as long as I’ve been at this facility and have secretly wished I could get it many times, I don’t know that much about the technicalities. That’s not my responsibility though.

From now on, I believe the only possible way is up. Even if I don’t get the one-on-one support I need, the staff have a clearer understanding of my needs and will be able to help me more adequately. Also, with my signing of the letter, I sort of also signed for my wish to stay at the current home. I originally intended on breaking my habit of looking for another place today, but still checked. I wasn’t as affected by what I saw though.