What If 2034 Isn’t the End After All?

Posted on by Astrid

Hi everyone. I’ve been struggling quite badly with lack of meaning in my life lately. I mean, last week was pretty productive, but unfortunately that didn’t last.

Last Sunday, I was also discussing my comment that everything will be okay in 2034 with my wife. As regular readers of this blog know, I got the idea from the book 2034. Not that I’ve read it, but it’s about the next world war and I somehow decided to flip things around and say that everything will be okay. Originally, I was sort of serious, like I used to be about 2021 back in the early years of my blog. Now though, the only way I can picture 2034 is it being the end of the world in some kind of nuclear war.

My wife put things into perspective for me, saying that while it’s possible there’ll be a war between the U.S. and China in the coming decade, Europe most likely won’t be involved. That doesn’t mean there aren’t other risks, of course, but it sounds unlikely that the world is going to be blast to hell in 2034 or before.

This, however, doesn’t feel entirely comforting. The thing is, I’ve built my life around the idea that I won’t have ten more years to live. I’ll be 48 in 2034. That isn’t young, but it’s way too young to be dying of natural causes.

It somehow feels safe to say I will die in 2034 anyway. This allows me the luxury of not making any long-term plans. It allows me to take life day by day, week by week. It also allows me not to worry about my quality of life in the long run, which if I do think about it, doesn’t look good. My one-on-one has to be reassessed at the end of 2026. I’m scared that it’ll be cut and I’ll be forced to take more sedating medications to deal with the resulting challenging behavior. If that’s my life from 2027 on, all I can hope for is that it doesn’t last long.

Also, if life drags on past 2034, there’s no urgency to help me improve my quality of life. Not that there is according to the powers that be anyway. The team manager literally asked me what I’d do if everything isn’t alright by 2034. This was six months ago, when I was actively considering ending my life. I’ve not been actively suicidal since, but my life being finite has been on my mind all the time. And I’m not sure how I feel about this. On the one hand, I really want to make the most of the remainder of my life, but on the other hand, I am paralyzed by, well, I honestly don’t know what, and this leads me to think that I’d be better off dead.

Grief: Dealing With Loss (Of Any Kind) #AtoZChallenge

Posted on by Astrid

Hi everyone. I’ve been struggling a lot lately again and, as a result, today am particularly late writing my #AtoZChallenge contribution. Today’s letter is G and I want to talk about grief.

Grief can refer to a person’s reaction to losing a loved one to death. That’s the most heard of definition anyway. Grief for a loved one who has passed away can last very long and, in fact, isn’t considered abnormal for the first year. If a person still experiences significantly distressing symptoms of grief more than a year after their loved one has passed, they may be diagnosable with prolonged grief disorder (also known as complicated grief).

Grief, of course, can also refer to the distressing symptoms experienced after losing a beloved pet. It doesn’t matter in this respect that the pet isn’t human; grief can still be experienced very deeply. I mention this because, like I said on Saturday, my spouse and I lost our cat Barry that day.

Grief, however, can also relate to distressing symptoms experienced after a loss that isn’t due to death. For example, heartbreak is in a way grief too. So are the distressing symptoms I experienced when losing my sight and, later on, many acquired skills due to autistic burnout.

Most people will be familiar with the five stages of grief described by Elisabeth Kübler-Ross. These stages are denial, anger, bargaining, depression and acceptance. In reality though, many people will not necessarily experience these stages in order and they may fall back due to stress. Still, many of the symptoms associated with the earlier stages in this model, made it into the criteria for prolonged grief disorder. Symptoms of prolonged grief include:


  • Identity disruption (eg. feeling as though a part of oneself has died).

  • Marked sense of disbelief about the death.

  • Avoidance of reminders that the person is dead.

  • Intense emotional pain (eg. anger, bitterness, sorrow) related to the death.

  • Difficulty reintegrating, such as problems engaging with friends, pursuing interests or planning for the future.

  • Emotional numbness (absence or marked reduction of emotional experience).

  • Feeling that life is meaningless.

  • Intense loneliness: feeling alone or detached from others.

Of course, people can experience many of these symptoms without having lost a loved one to death. Emotional numbness and avoidance of triggers, after all, are also symptoms of post-traumatic stress disorder. Many other symptoms occur in people who were traumatized in some way too. As an example, I relate to all symptoms when the aspect of bereavement is removed, and not just since Barry was put down. I don’t know whether that makes sense, but oh well.

Young At 40 Yet Old At 36

Posted on by Astrid

Hi all! A few weeks ago, my spouse sent me a YouTube short about millennials’ reactions to the idea of midlife. According to the American Psychological Association, or that’s what the YouTuber said, midlife starts at 36.

Then I read a blog post today in which the author, now retired, reflects on how she imagined retirement to be when she was still young… at 40.

I am 38. Does this mean I’m in midlife or does it mean I’m still young? It probably depends on your perspective.

After all, with respect to my daily life, since I don’t work or study and since I’m childfree, it allows me the same freedom a retiree would have. I also enjoy many things older people enjoy, such as crafting. That is, often younger women do craft, but it’s more for their kids.

With respect to my health, it’s a mixed bag. I am physically healthier than I was five years ago thanks to weight loss and moving more. I however do notice the effects of my disabilities (and probably my history of obesity too), in that I’m probably less fit than many women my age. For one thing, I do find that my knees hurt regularly.

All this being said, age is in many respects just a number for me. Sometimes, I feel like a lady in her seventies, while at other times, I feel quite childlike, both in a positive and a negative way.

Statistically speaking, I do realize I’m at midlife. This sometimes causes me to worry about aging, but then again I always had this worry that I’d die young. That’s not necessarily specific to midlife. I am pretty sure, in fact, that now that I’m physically fitter, the worry is less about myself. That doesn’t mean the worry has gone, but now it’s more of an existential dread regarding the world as a whole. I don’t think one is easier to deal with for me than the other.

I’m linking up with Talking About It Tuesday and #WWWhimsy.

December 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. I’m early sharing my end-of-the-month reflections, because I’ll share a review of the entire year tomorrow or on Sunday and I just now felt inspired to write. As usual, I’m linking up with #WBOYC.

The month started out pretty good with my new, pretty much ideal day schedule having taken effect. I did worry slightly that it’d be taken away if I didn’t spend my every two-hour activity time slot in the afternoon actually working with polymer clay or doing some other long activity. Thankfully, so far, it’s not been changed.

Also early in the month, I started acting out a bit because I got assigned a temp worker due to a staffing rearrangement. I started constantly comparing myself to a client who doesn’t need to deal with temp workers. Finally though, I calmed down and asked my assigned staff to write in my signaling plan that staff focus on validating my feelings and needs rather than feeding my comparison trap.

In mid-December, I went on the lights tour (I called it “Christmas lights tour”, but it wasn’t actually specifically Christmassy) around town. I loved it but had to agree with the staff that going without my one-on-one wouldn’t have been an option.

Christmas itself was okay but overwhelming. My spouse and I spent Christmas day at my parents’, where my sister and her family were too. Dinner was a lot better than I expected. However, both my spouse and I were overwhelmed by my nieces and my spouse might’ve contracted whatever illness my sister was carrying (COVID, possibly).

We spent the afternoon after Christmas at my in-laws having a Christmassy lunch. I went for an hour-long walk with my mother-in-law that day.

Like I mentioned last week, the storm last week caused one of my institution staff to be hit by a falling tree. She unfortunately died. This was quite a scary experience to many people here, so I for one at least hardly went for walks all week. I finally found out how to check for weather warnings today, so was able to go on a walk (two, in fact) again. Thankfully, the areas with lots of trees now cannot be entered anyway.

I have been slightly more creative than I used to be over the past month. Stilll not as creative as I’d like to be, but I’m getting better. Projects included another polymer clay unicorn, a butterfly and a pineapple charm. Also a dolphin which hardly anyone sees as a dolphin. The worst insult it’s gotten is that it’s a mouse.

Polymer Clay Dolphin

In the health department, I did okay. I did gain 2kg over this past month, all within the last two weeks. However, I am still within the weight range I agreed upon with my dietitian and on the upper end of a healthy BMI. I did resolve to lose those 2kg eventually though, but it doesn’t have to be in two weeks.

I do have some pain in my lower abdomen. No UTI and a bladder scan was normal too. I guess that’s a positive thing.

Another positive thing, which I almost forgot to mention, is the fact that my one-on-one got renewed. Not just that, but the hours the agency had asked for, were granted. This means my care for now will definitely not be decreased, like I had feared. After all, until the renewal, the agency was paying for some hours itself and that couldn’t have lasted. Thankfully, the Care Office granted the full number of hours requested.

#WeekendCoffeeShare (December 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the #WeekendCoffeeShare once again. As usual, I’ve had my last cup of coffee for the day. We didn’t have chips to go with my soft drink, as for some reason the person ordering our care home groceries had ordered far too little. We are also almost out of desserts and the next delivery of groceries won’t be till this coming Wednesday. It’s going to be a not so luxurious Christmas after all. Speak of first world problems. Let’s have a drink (thankfully I have lots of green tea, including coconut-flavored green tea) and a biscuit (I have cinnamon stars and stroopwafels in my cupboard) and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s usually uneventful here in the eastern Netherlands, but not so this week. Storm Pia actually hit us hard. In fact, on Thursday, the storm caused a tree to fall over on top of a side-by-side bike here on the cycling path that’s along institution grounds. The staff member steering the bike was hit so hard that she didn’t survive. The client had relatively minor injuries, but I’m pretty sure they’re traumatized for life. I don’t know the staff member myself, thankfully, but it was a warning sign not to go outside in the storm.

We’ve been experiencing heavy rain and wind all week except for Monday. Monday was actually a beautiful day. I went for a 5K walk with a staff member that day.

If we were having coffee, next I’d tell you about the stroopwafel cheesecake I made yesterday. I made it because my one-on-one got renewed, something I really hadn’t expected. The cake was extremely sweet and a calorie bomb as they say here but who cares? It was also delicious, after all.

If we were having coffee, I’d share that I’ve really been feeling creatively motivated lately but have been struggling to put this motivation into action. As a result, I haven’t been doing much with my polymer clay lately. I’d really like to change that soon. I did order new clay, because I want to experiment with Cernit and also because some of my Fimo is too crumbly to condition without exerting enormous effort.

If we were having coffee, I’d share that I did come up with the idea of using my two-hour activity time slot for cooking a simple meal for myself and my fellow clients. We could then reheat it in the oven or microwave when it’s dinnertime.

If we were having coffee, I’d tell you my assigned staff asked me to think of goals for my upcoming care plan. He did say that these goals do not need to be all that drastic or anything and that simply having a meaningful life could be a goal in itself. I mean, my staff at the intensive support home have been pushing me to create independence-focused goals but I really don’t care for those given the discrepancy between the fact that technically my body still functions okay but due to overload tasks still cost me tons of energy. I mean what if staff and I set a goal for me to achieve a certain task and I physically achieve it in three months’ time, then staff will always expect me to do it independently because purely physically speaking I can. Then because it costs me tons of energy I’ll end up neglecting it if I don’t have supervision (ie. someone pushing me to do it) and we end up back at square one. And to be honest, I don’t want to have someone supervise my every task that I can do myself just so they can tell me to do it myself and push me far beyond my capacity limits in terms of energy.

If we were having coffee, lastly I’d tell you all that I’m looking to finally turn my room into an actual living space. I’m looking to buy some more furniture and also to possibly decorate it more. Currently, there’s a box full of junk in my room that I could really empty out. I mean, after I’ve finished my crisis signaling plan, because the folder from Raalte is in there. In its place, I’d like to put a second nightstand or small cabinet, so that I can put my claying supplies in there rather than in a box under my bed. I am also looking to put some poster on my wall, probably something not too weird. I mean, I originally wanted to go for a unicorn theme but that’d be all very flashy, which isn’t exactly my style.

Speaking of unicorns, I will be wearing a unicorn-themed Christmas hoodie this year, like last year. It’s a little on the big side now, but not too much so.

Hope you all have a lovely Christmas.

Looking After My Health

Posted on by Astrid

Hi all. Today’s question for Sunday Poser is how well we look after ourselves, health-wise. Sadje observes that most regular bloggers are over age 50. Honestly, I wonder how they do it, if they also lead an active lifestyle in other respects. But this may be a question for another time.

I really struggle with being health-conscious, as I am quite the impulsive type. Thankfully, I never smoked other than the odd whiff and I don’t care for alcoholic beverages either. Food though is a different story. I’m recovering from disordered eating. In my case, it mostly involved overeating and some purging.

Six years ago, when I had just been kicked out of the psychiatric hospital, I weighed 80kg and could barely walk for fifteen minutes at a time. I am 1.53m in height, so this means I had a BMI of nearly 35, or obesity stage II. My spouse recommended I lose weight for my health. I did, although at the time I only had it in mind to lose the 10kg I was in the obese range. However, I never maintained a weight within the overweight, let alone healthy, BMI range until sometime in 2022. My food addiction was just too strong.

Now, thankfully, I’ve been at a healthy BMI for several months. I was talking to my spouse this afternoon and we were discussing my recent clothing shopping sprees. My spouse said I look after my appearance better, but admitted it was hard back several years ago. I started talking about my being “quite chubby,” only to be corrected by my spouse with “No, you were fat.” That’s what I thought too, so it didn’t come across as offensive at all, but I wanted to downplay things a bit in case my obesity wasn’t as bad and I was making a big deal out of nothing.

Back to ways in which I look after my health. I try to eat enough fruit and veg each day, but this is somewhat of a struggle here at the institution. I also walk at least 30 minutes at the bare minimum everyday. I haven’t had a day gone by since owning my Apple Watch that I didn’t meet my stand goal. Of course, this requires me to only move for a minute each hour, but at least I’m not sitting on my butt for hours on end.

I do take multiple medications. Five, in fact, and that means I’m officially classified as having polypharmacy. This means that I’m at increased risk of health issues due to the number of meds I take. Thankfully, I do get bloodwork done regularly to check for things like kidney function, fasting blood glucose, triglycerides, etc. Only my kidney function has been off, but it hasn’t decreased over the past year and is still within the mildly decreased range (my egfr is 68, if you’d like to know).

I did get a kind of wake up call a few days ago when I found out someone I met at the blindness training center in 2005 passed away recently at the age of 51. We had a lot in common, including obesity, mental health problems and psych medications, etc. I know, I’m no longer obese, but it’s not like my body has magically forgotten the twelve years or so it spent being overweight.

Thankfully, even though I cannot undo the bad choices I made in the past, I can decide to be more health-conscious from now on. Will it make sure that I live till age 83 like my maternal grandma or 94 like my paternal one? No.

There’s no need to blame ourselves for our health issues. I mean, some folks like to call cancer, cardiovascular disease etc., “illnesses of affluence”. This might be so on a societal level, but it’s sick (no pun intended) to blame the individual for falling ill or dying young. I would love to live to age 83 or 94, but it’s only partly within my control.

Visiting Extended Family

Posted on by Astrid

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my spouse a kiss when we last saw her in 2016. My spouse politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Poem: The Book Called “Me”

Posted on by Astrid

Endless streaks of time (or so it seems)
lie ahead of me,
as I turn page after page
in this book called “Me”

Until one day (possibly still far from now)
I will have reached
the page I pray concludes
with a happily ever-after

In six days, I will turn 36. I am hopeful that I am still not halfway through my life yet, but then again I recently learned that the life expectancy for someone born in 1960 was 52. I just Googled the life expectancy for my birth year, 1986, which was 74.8 years. If this is true, I am just under eighteen months shy of midlife. I am not the healthiest either, so to be fully honest, I probably can’t expect to live that long.

I didn’t want this poem to be fully about doom and gloom either, because, as a Christian, I do believe in eternal life for those who are saved. This is why I ended this poem on a positive note.

I am writing this poem for this week’s Twiglet, which is “turning page”, as well as the Go Dog Go Cafe Tuesday Writing Challenge, which is to start a poem with the word “endless”.

#WeekendCoffeeShare (April 10, 2022)

Posted on by Astrid

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?

Poem: The Monster

Posted on by Astrid

Sometimes
It screams
Loudly
Telling me
To give up once and for all

Other times
It whispers
Softly
Luring me
To take that final step

Sometimes
It seems silent
Just for a little while
But it always returns
The monster
Wanting me to die

This poem was written for Friday Writings #14, for which the optional prompt this week is to write about monsters. I am also joining dVerse’s Open Link. I’ve shared poetry about my depression and recurring suicidal ideation in both linkies before. I often refer to this state as “the monster”, so this theme came to mind when I read the Friday Writings prompt.