#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?

#WeekendCoffeeShare (April 11, 2021)

Hi everyone on this cloudy and slightly rainy Sunday evening. I’m rather late writing my #WeekendCoffeeShare post this week. I’m having a rather hard time planning when to write, as I cannot concentrate on it when my one-on-one staff is with me and yet struggle to feel well enough to write when alone. I just finished my dinner, so no coffee for me as of yet (though with my parents, coffee after dinner was a ritual). If you’d like a Senseo though, I can make you one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week was rather bad weather-wise. It’s been raining all week. On Monday and Tuesday, it even snowed a bit. It’s been near freezing cold too. How is your weather?

If we were having coffee, I’d share that this week, the physical therapist and orthopedic shoemaker came by to discuss my getting semi-orthopedic shoes. My current, store-bought shoes aren’t great for fitting my AFO in. They also have laces, which I can’t tie myself. I’ll hopefully hear next week what models they have available. I did try on a pair already, but this was just to get an idea of what I’d need.

Thankfully, the shoes will be fully covered by long-term care. This did lead to a bit of self-loathing, in that I feel like a burden for costing so much with my one-on-one, the weighted blanket and all the other costs and now this. I try to calm myself by thinking it wasn’t really my decision. Besides, I will most likely experience less pain when walking and be able to walk longer distances. Still, I can hear my inner critic say that I fake my mild cerebral palsy.

If we were having coffee, I’d share that, last Friday, I was in a crisis. I don’t even know what led to me starting to feel triggered. At some point though, I left my room at night. On my way to wherever, I bumped into something and swore. Then I decided I’m unforgivable anyway now and decided to self-harm. I’m okay physical wound-wise and the night staff eventually calmed me down. Still, I have been feeling really unsettled all weekend.

If we were having coffee, lastly I’d share how proud I am of myself for continuing to blog each day and sometimes more than once. Of course, I’m busy with the #AtoZChallenge, but I also managed several other blog posts. That’s pretty awesome if you ask me.

How has your week been?

#WeekendCoffeeShare (February 21, 2021)

Happy Sunday everyone! I’m rather late joining in with this week’s #WeekendCoffeeShare, but better late than never I’d say. In addition to coffee, today we have two types of soft drinks in the fridge, both partly lemon-flavored and neither of which I like. If you’d prefer cold water, I totally get you. Unfortunately, the water hasn’t been in the fridge that long yet, so it’s not super cold. I hope you enjoy whichever drink you choose anyway. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d ask about your weather. Is yours as crazy as ours? Last week, remember, we had snow and temperatures below freezing. Now, the weather is really spring-like, with the temperature having risen to 17°C here in Raalte and to 19°C in some places in the south of the country. Tomorrow we might get even warmer weather.

If we were having coffee, I’d share I went to Lobith for the week-end. My husband and I got Domino’s pizza yesterday. The one I got, curry kebab, was good, but not as great as I’d expected.

On the way back to Raalte, my husband had a radio station on playing summer hits to celebrate the warm weather. I now have the Venga Boys’ Boom, Boom, Boom stuck in my head and I actually don’t mind. I don’t think anyone who isn’t a child of the nineties can truly appreciate the beauty of this music. 🤣

If we were having coffee, I’d share that I still don’t feel back to my normal self. My magnesium, which I started last week for constipation, has been upped. I’m struggling to decide whether this was a good thing or not. Guess I’ll give it a few more days to see how I do.

I’m also still pretty fatigued and easily overloaded. On Thursday, I landed in a minor crisis due to it. Unfortunately, my community psychiatric nurse didn’t work that day and the substitute couldn’t help me much at all. He offered to ask my CPN to call back on Friday, but I think she may not have received the memo. By then though, I was feeling somewhat more functional.

If we were having coffee, I would tell you that a fellow client and staff cooked spaghetti for us today. It was good.

If we were having coffee, lastly I’d share that I made a lip scrub with my one-on-one staff this evening. I used coconut oil, sugar and vanilla extract. Unfortunately, it didn’t turn out to be the consistency I liked. However, it did make my lips feel soft.

What’s been going on in your life?

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.

Another Appointment With My CPN

Today, I had an appt with my CPN again. I can’t remember all the details, but I did tell her that I had had a breakdown on Sunday. I was completely honest, sharing that I had seen and heard things that aren’t there. It was as if something was truly telling me I’m a monster and everyone will leave me. Then I saw some form of Heavenly light. I can’t describe it really and it wasn’t very vivid even then, but it was more than mere wishful thinking.

My CPN encouraged me to discuss this with the psychiatrist when I see her on the 22nd. I really hope she can help me. My husband later asked me whether it was truly psychosis or a panic attack. I don’t think I was full-on psychotic but my perceptions and thoughts were definitely headed that way. My CPN agreed.

I can’t remember whether I told my CPN, but I had these thoughts and perceptions once before. Well, a few weeks ago I had them too, back when this depressive stuff all started, but then it wasn’t that bad. Back in December of 2009, I think it was even on Christmas, it was. I had run off from the psych ward in the snow. I picked up snowballs and somehow was convinced they contained drug needles. I wasn’t depressed at the time, just batshit crazy. It lasted only for a few hours though, but came back several times within the next few months, only disappearing when I was put on Abilify.

Now I’m pretty pessimistic. After all, I’m already on the highest dose of both Abilify and the antidepressant Celexa. (I mention this because I’m pretty sure I’m depressed, whether clinically or not.) I’m hoping though that the psychiatrist can put me on some PRN medication other than lorazepam, which I can use if I fully break down again. I know I have had experience with Phenergan (promethazine, a low-potency neuroleptic) and that worked great when I was on no other medication but not at all once I was on my current regimen. Maybe the psychiatrist can prescribe me something similar but different.

I also talked to my CPN about the incessant crying. She told me this may be useful. After all, I learned from a young age on to hide all negative emotions except for frustration (because I couldn’t hide that). In fact, I was told that I was “too quick to anger”, but this was used as an excuse to force me to repress every emotion other than a smile. I hadn’t been able to cry unless I was angry first until only a few months ago. As such, my CPN reasoned that I might have a lot of catching up to do.

Fighting the Depression Demon

I was in yet another crisis yesterday. When the extra staff was about to leave, I crashed and started crying. The staff felt somehow obliged to stay and, when she finally left, another staff tried to comfort me. I cried for like three hours.

Then today it seemed to start all over again. I decided to call my husband, who told me to push the depressive thoughts away. I was going to say I feel like a selfish monster for having even unconsciously made the staff stay yesterday, but my husband said that I need to push away those thoughts too.

My husband kept repeating that I’m not a monster and I need to stop those thoughts now. He said that these thoughts are destructive. I find it hard to understand, but maybe on some level I do. I mean, I feel that I’m wicked and that’s why I’m depressed and that’s why I ask for more and more help and that’s why people leave me and that’s why I’m depressed. I can see now that this is a vicious cycle. I’m not sure it isn’t true, but I remember from the little cognitive behavior therapy I took years ago that really it doesn’t matter. It’s non-functional. Or destructive even. And that’s what matters.

My husband tried to remind me that God loves me. I kept getting stuck on technicalities such as the fact that I wasn’t baptized. At first he told me: “So then get baptized if it helps you.” I can’t see how I could be baptized in this time of social distancing.

Then my husband started to tell me that I am at a crossroads and can take one step towards despair or one step towards hope each second. Maybe even if I don’t get baptized at this point, because well I can’t, I can take a number of baby steps towards hope. Towards God.

Lord, please help me take every second as it comes. Please help me choose each second to take that one step, even if it’s a snail’s step (or crawl, whatever snails do), closer to You.

Lord, thank you for bringing my husband into my life. Thank you for speaking through him and reminding me to live positively. In Jesus’ name, Amen.

Now I’m totally clueless about the supposed format of prayers, so I have no idea whether this was a proper one. I trust God hears me whether my prayer was written properly though.

An Okay Day

I once again want to write, but am not too inspired to write anything more than a diary entry. That’s okay though. After all, when I first created this blog, I intended it to be my personal space to share my feelings and thoughts.

Today was a relatively good day. It was better than yesterday at least. Yesterday evening, I landed in a bit of a crisis. The extra staff who had been having dinner with me in my room, said that, while I’d do stuff on the computer, she’d be back “in a while”. That confused me and my first response was to elope. Thankfully, the staff foudn me pretty soon, as it was freezing cold outside.

I talked some to her about my needs and wants re extra support and what they’d do with me. She suggested I get a daily or weekly calendar that has activities on it for me to do with the staff. She also understood that her being unclear about when she’d be back, was confusing for me.

Thankfully, today, I feel okay. I went for a walk in the morning. Then at 2PM, my mother-in-law came by. We had a cup of coffee in my room and then went for a walk. I got in over 13K steps total today, even though in the evening, it was raining so I couldn’t go for another walk.

My mother-in-law offered to buy me an interactive stuffed cat. It’s not really a toy, as it can’t be handled harshly, so isn’t suited for young children. It was specifically developed for adults with dementia. The cat makes soothing sounds, purrs and moves a little when stroked, meows, etc. It obviously has an on/off switch. I am not sure how crazy this would be, as it’s obviously not a real pet. However, I think I’d really like it. I seem to remember at day activities there was an interactive dog, but I’m not sure that one was the same sort of thing as the cat my mother-in-law is thinking of buying.

The evening was okay. I played some card games of mau-mau with the extra staff. I also helped her make coffee or tea for my fellow clients. That is, I told her which cups everyone uses and whether they drink coffee or tea. I actually enjoyed myself a little being in the communal room.

I started reading Hatch, the second book in Kenneth Oppel’s alien invasion trilogy, which came out last Tuesday. So far, I am totally rooting for the main characters. I mean, I hardly even care whether the aliens wipe out all of humankind if they leave our heroes alone. That may be a bit weird, but I at least know it isn’t real.

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.

If The Staff Saw My True Nature…: Reflections on Not Belonging

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

#WeekendCoffeeShare (November 8, 2020)

Hi all on this sunny Sunday! Okay, it’s past 9PM here and the sun has set already, but it was sunny during the day. I should really have taken a picture.

I just had my last drink for the day. However, the beauty of virtual coffee shares is that people can join in whenever they want. So grab a cup of coffee, green tea or water. I’m pretty sure there are also soft drinks in the fridge, but I rarely drink those now. Let’s have a drink and let’s catch up. As usual, I am linking up with #WeekendCoffeeShare.

If we were having coffee, I would tell you that this whole week, the weather has been beautiful. It was a little chilly some days, but not as cold as you might expect in November. In fact, today, I even took a walk with my husband without my coat on. I did of course wear a fleece vest. It was sunny and almost warm.

If we were having coffee, I would tell you that I canceled my sister’s visit for this week too. The reason this time is a combination of the stricter COVID-19 management rules and my husband wanting to celebrate his birthday with me this week-end. With respect to the former, for example, my sister could be visiting with her husband and daughter, but three adults are not allowed together outside. This would mean my brother-in-law wouldn’t be able to go on walks with me and my sister. As if the risk of contracting COVID is higher outside than inside.

Also, I wouldn’t be allowed to go to my husband’s after they visited. Or maybe strictly speaking I could, but it’d be against the spirit of the lockdown. My husband felt pressured by me to let my sister and family visit, but eventually it became clear he’d really like to have me over for the week-end to celebrate his birthday. His birthday is on the 12th, by the way. So since my husband’s birthday is more important than a random visit from my family, we’re going to reschedule that sometime after the worst of the lockdown has ended.

If we were having coffee, I’d share that I gave my husband an Airfryer for his birthday. He made us both thick fries in it yesterday. Even though I’m pretty sure he didn’t salt mine, or at least not as much as I’d have done, they were still delicious. My husband joked that we’d have vegan fries (duh!) but to make up for it, we would eat real hamburgers. They were great too.

If we were having coffee, lastly, I would tell you that I was in a bit of a crisis this evening again. I got majorly triggered by a staff raising her voice as she commanded me to go to my room. She had intended for me to seek the quiet of my room, because I was rapidly becoming overloaded with all that was going on with the other clients. Her wording that I’m not the only one (I’m pretty sure she didn’t say it that way, but that’s how I interpreted it) triggered me to feel that I wasn’t allowed to feel the way I did and was attention-seeking. This then quickly spiraled out of control. Thankfully in the end, I was able to talk it through with the staff and also write down my feelings. I did take a PRN lorazepam, but that’s totally okay.

What’s been going on with you lately?