Fatigue (For Lack of a Better Word)

Posted on by Astrid

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.

Song Lyric Sunday: Bus or Truck

Posted on by Astrid

Man, I totally flaked out on the 31-day writing challenge. Well, whatever. I’ve not been feeling well, both physically and mentally. Today I’m feeling slightly better, so it’s time for a blog post.

This week’S theme for Song Lyric Sunday is Bus/Truck/Lorry. I am going to share my favorite children’s song: Wheels on the Bus. The lyrics I found weren’t the same ones I normally listen to and I can’t find the right ones (unless they’re attached to the YouTube video). Here are the lyrics I found first, and then my favorite version on YouTube, which is by The Gigglebellies.

The wheels on the bus go round and round
Round and round
Round and round
The wheels on the bus go round and round
All ’round the town
The wipers on the bus go swish, swish, swish
Swish, swish, swish
Swish, swish, swish
The wipers on the bus go swish, swish, swish
All ’round the town
The driver on the bus goes ‘move on back’
Move on back
Move on back
The driver on the bus goes ‘move on back’
All ’round the town
The people on the bus go up and down
Up and down
Up and down
The people on the bus go up and down
All ’round the town
The horn on the bus goes beep, beep, beep
Beep, beep, beep
Beep, beep, beep
The horn on the bus goes beep, beep, beep
All ’round the town
The baby on the bus goes ‘whaa whaa whaa’
Whaa whaa whaa
Whaa whaa whaa
The baby on the bus goes ‘whaa whaa whaa’
All ’round the town
The parents on the bus go ‘shh, shh, shh’
Shh, shh, shh
Shh, shh, shh
The parents on the bus go ‘shh, shh, shh’
All ’round the town

There’s also a similar song about the wheels on the truck. I don’t listen to that nearly as often though.

#IWSG: Writing Without Reading?

Posted on by Astrid
IWSG

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) day. This months’ optional question is about your thoughts re whether reading is required for writing.

In August, I did a good amount of both reading and writing. In September, my reading went almost entirely out the window and I also wrote far less than I intended. However, I still managed to write at least one blog post each week.

To answer the question, for fiction writing, I think reading is essential. Of course, this means your writing is a mixture of your own ideas and someone else’s, but a good fiction writer (which I’m not) can write imaginatively enough to appeal to readers looking for an original viewpoint. My own fiction writing has always bordered on plagiarism, if it wasn’t actually plagiarism.

For non-fiction, I tend to think that original viewpoints are good, but they require some level of familiarity. I have read blogs where the author’s words were so jumbled that I couldn’t make sense of them. I also happen to love personal essays or blog posts I can relate to.

I for one love both reading and writing prompted pieces. I like to read about other people’s original perspecctives on a common theme. For this, reading is essential for writing. Even so, I don’t tend to read others’ responses to prompts I participate in before posting my own. So well, there are two sides to this story and the truth is probably somewhere in the middle.

Why I Am in Long-Term Care

Posted on by Astrid

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

31 Days of Prompted Ponderings Landing Page

Posted on by Astrid

Okay, so I’ve not written nearly as much over the past few weeks as I’d wanted to. For this reason, I’m not sure whether the challenge I’m embarking on will be a success. Last year, I joined #Write31Days but didn’t finish. The challenge was discontinued this year, but Kate Motaung has done achallenge-within-the-challenge for years of doing 31 days od five-minute freewrites. I won’t do those, as sticking to five minutes once I’ve started writing is too hard. However, I will use the daily prompt words to hopefully inspire me to write everyday in October.

This is the landing page or table of contents for the challenge. In previous years, keeping my landing page updated was as much of a challenge as writing everyday, so we’ll see how this goes.

Anyway, I won’t have a theme for my challenge. I’m not even sure I’ll be able to use the prompts as main focus of my posts, but we’ll see. Enjoy!

#WeekendCoffeeShare (September 29, 2019)

Posted on by Astrid

Hi everyone, how are you doing? I have had a for me incredible amount of coffee for a Sunday today, so am feeling pretty energized despite it being nearly 9PM here. This evening though, I chose two cups of green tea and two apple and peach flavored soft drinks. Anyway, I’m joining in with #WeekendCoffeeShare again.

If we were having coffee (or green tea or a soft drink), I’d share that my transition into the care facility went relatively smoothly. I moved in on Monday. I do miss my husband, obviously, but am mostly enjoying my time being here. I feel, overall, a lot more relaxed than I did when still living semi-independently.

If we were having coffee, I’d share that the house-buying process was finalized last Wednesday. As I said in my previous post, the paperwork was somewhat stressful as I couldn’t read or sign the agreements due to being blind. That got sorted though thanks to a very accommodating solicitor.

If we were having coffee, I’d share that my husband has been very busy doing odd jobs in the new house. I muted the house-related WhatsApp group because, not being there, I couldn’t conceptualize what all was being done. However, I guess in a few weeks, I’ll like it in the new house. I saw it for the first time on Wednesday before we saw the solicitor and it’s larger than I expected.

If we were having coffee, I’d share that I’m excited for my husband to come over here on Thursday. He originally said he’d come by either MOnday or Friday, so since I hadn’t heard a thing yet, I assumed he was coming on Friday. Today he said though that, after the final inspection and handing in the keys to our old house, he’d travel my way. He said we could have lunch at an Australian restaurant that’s in a nearby town.

If we were having coffee, I’d share that I am totally in love with all the sensory equipment at both the day center and the care home. At the day center, there’s a snoezelen® room. I spent some time on Thursday lying next to the bubble unit and on Friday lying on the waterbed. At the home, there’s a room with a rocking lounger. The staff also retrieved a kind of teeter board from another client’s room. That client has a swinging chair that’s hers but I was allowed to sit in it in her room for a bit.

If we were having coffee, I’d share that the care facility food is pretty good. I got mashed potatoes twice this week, which is one of only a few things I truly can’t stand, but they were able to swap my meal with someone else who didn’t mind mashed potatoes. My husband would say I’m a pretty picky eater, as I also had instant noodles one day when we actually got spaghetti carbonara. I think I can make myself eat that though and I won’t put it on my dislike list unless it’s very easy to do so.

If we were having coffee, lastly I’d share that I did have a relatively good amount of physical activity this past week. I don’t have my elliptical yet, as my husband will be delivering it on Thursday, but I did go for some walks. I don’t use my Fitbit right now, as I can’t find its charger and I don’t want to be discouraged by it, but I do feel pretty good about my activity level. I am eating pretty well. Now I guess I do still get too many calories for the amount of exercise I get, but I will hopefully soon find ways around that. At least I haven’t really craved binge food much. Finally, I also made time to do mindfulness meditations most days.

How was your week?

First Few Days in the Care Facility

Posted on by Astrid

So I haven’t written in nearly a week. I wanted to, but on Monday, was still adjusting to being in the care facility. On Tuesday, I felt really off. Then yesterday my husband and I traveled to our new house, the house we bought, and to the solicitor to sign the paperwork. That was somewhat of a hassle, as I cannot make a signature that looks remotely like the one on my passport. So for this reason, the solicitor had two coworkers sign in my place. Thankfully though, the thing is now finalized and we’re officially homeowners!

My adjustment to living in the care facility has been harder than I imagined. On Monday, I did pretty well. Tuesday I started day activities. It was a good day weather-wise, so I was able to enjoy some time outside.

Then tuesday night I suddenly was overcome with shame about my care needs. It all makes me so confused, since if I truly function emotionally at a 16-month-old level, I probbably shouldn’t be able to feel shame. And yet I do. My father’s voice is in my mind like all the freakin’ time. So is my former psychologist’s.

Yesterday, my husband came to pick me up for the official stuff at 11AM. We returned to the care facility at around 6:30. I did okay other than obviously missing my husband. I rationalized that away though. He told me he was a little disappointed in how far the journey is from our new house to here. There will no doubt be a solution, for example me traveling to our house by train and ParaTransit taxi. Still, the conversation did upset me.

I’m constantly facing this bit of cognitive dissonance between the parts of me that are severely disabled and truly function at a young child’s level and the parts that can be married and have a normal life. I can’t and don’t want to disown either, but it’s a huge challenge finding the middle ground.

Besides, even if I wanted to, I can’t go back to my life before moving here. The old day center has a pretty long waiting list and they’ve most likely filled up my place by now. I don’t have a room to myself in the new house. I can’t go back to community support funding from long-term care. Now of course if I truly could disown the severely disabled parts of myself, I might’ve been able to find a solution to at least the last of these problems. Long-term care funding is available to those who live at home too, after all. Maybe I just need to admit that I’m too darn selfish to actually choose my husband over proper care.

Saying Goodbye at Day Activities Again

Posted on by Astrid

I contemplated for a bit what to title this post. Seriously, I don’t hope next year will see yet another goodbye from day activities. I really hope I will be able to stay at the day center in Raalte much longer than I did at the one I left last year and this one. I know, I didn’t have to leave this center because the team or management no longer wanted me. I’m so glad I left knowing that the reason was mostly down to my own choice and circumstances.

So today I had my leave-taking party at day activities. First, we had French fries with a snack for lunch. I loved them. Most times I’ve gotten a choice of snacks, it was just between the two most commonly-eaten Dutch snacks. I told the staff I wanted a type of spicy snack called “mexicano” and suggested another client, who is non-verbal but about whom we know that she likes spicy food, might like it too. She definitely enjoyed it.

Then when having coffee break in the afternoon, I presented my group with “stroopwafels”, a type of Dutch caramel-filled waffle. I also gave each of the staff a small handmade soap. The staff gave me a large stuffed panda bear.

Then some clients and staff from other groups visited to say goodbye. I got a lovely huge card, the size of a small painting you can hang on the wall, from another group. It had a greeting in wooden tactile letters stuck on it. I also got chocolates. Another group gave me a card and two huge chocolate bars. Now my attempt at losing weight when I go to the care facility will have to be postponed a little

I do not know whether the clients on my own group will notice I’m gone. I guess they will, but most probably don’t have the words to ask about me. People from other groups have definitely been asking about me leaving for a while now and some say they’ll miss me. I will for sure miss them too.

💞 Happy Eighth Wedding Anniversary to My Husband and Me 💞

Posted on by Astrid

Today is September 19. Eight years ago today, my husband and I said our wedding vows. Twelve years ago today we first met at the bus stop nearest to the university that I could get to without transferring. That first meeting was awkward. I didn’t have good mobility skills, but of course it wouldn’t have been appropriate for me to use this boy I barely knew online as a sighted guide. As a result, I fell off a few steps and dropped my coffee.

My now husband said later that, after this first meeting, he wasn’t sure whether to ask to meet me again, but intuition told him that if he did, a lot more would follow. And it did.

Today, my husband had to work a long day as a truck driver. He originally had this week off, but changed that so that he could help me move to the care facility on Monday and make the move to our new house. He told me in advance not to be mad if he’d not be home by seven. As it turned out, he was home a little before eight. He also got tomorrow off unexpectedly, so our not being able to celebrate our wedding anniversary today is more than made up for soon.

Someone said in a comment on my previous post that my husband is lucky to have me, because at least I consider choosing him above self-care. I must say, I don’t see it that way, but I definitely feel I am lucky to have my husband. I mean, how many people would walk out on their significant others the day they were in a mental crisis? That’s not a fluffy, socially acceptable thing to do, but it’s reality. My staff at the psychiatric hospital had never seen a patient getting married while on their ward before.

The fact that my husband supports me through my decision to go into long-term care, also proves that I”m lucky to have him.

These eight years married and these twelve years knowing each other, have been very different from the traditional couple’s first so many years, but they’ve definitely been worth it at least for me. Without my husband, I don’t know that I’d even still be alive today. Here’s hoping for a lot more years of a happy marriage.

Freewrite on My Transition Into Long-Term Care

Posted on by Astrid

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy