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.

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.

#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.

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

#WeekendCoffeeShare (September 15, 2019)

Posted on by Astrid

Hi everyone, how are you? Let’s catch up over a cup of coffee or once again green tea in my case. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I’d share that this week was full of ups and some downs, though the downs weren’t as low as I’d expected. As regular readers of this blog know, I will be moving to the care facility in Raalte in eight days. My staff, my husband and I have been doing some preparation in regards to my leaving my current day activities and going to start up in Raalte.

If we were having coffee, I’d share that I finally told my mother I’ll be going to the care facility. I sugarcoated it a little, saying I’d be staying at my care agency in Raalte during the week and going home to my husband on week-ends. As a result, at first she wasn’t sure I’d be actually sleeping at the care facility. After a little “but I thought you were doing so well” and all, she wished me good luck at the place.

I am not 100% sure how to feel about it. In a way, this seemingly supportive attitude contradicts my memories from years before and that is hard to adapt to. However, I’m trying to be grateful for her support. I haven’t talked to my father or sister about it yet.

If we were having coffee, I’d share that my sister gave birth to a baby girl, Janneke Sietske, last Tuesday. She is named Janneke after my sister’s and my grandma who died last year and Sietske after one of my brother-in-law’s grandmothers. Janneke had some health issues early on and we haven’t been able to visit yet. We’re planning on visiting her next week though.

If we were having coffee, I’d share that today, my husband and I made some small banana soaps for the staff at day activities. I’ll give them to them on Friday, when I have my leave-taking party.

If we were having coffee, I’d share that my last appoitnment with my nurse practitioner went okay. He has referred me to the mental health agency in Raalte. I haven’t seen the referral letter, but he said he’d written about my trauma but that, for now, here and now work is most appropriate for me. I did try to get it through that ultimately, I do want to process my trauma. I’m not sure that will happen, as most likely I can’t get trauma therapy without at least a C-PTSD diagnosis if not DID/OSDD. Precisely getting my trauma-related issues assessed is a huge trigger for me.

If we were having coffee, lastly I’d share that I finally finished The Fault in Our Stars, which I started reading already three weeks ago. I will hopefully be able to finish at least one more book before the end of the month.

What’s been up with you lately?

Gratitude List (September 7, 2019) #TToT

Posted on by Astrid

Hi everyone! I’ve been wanting to write a lot today, but somehow, I once again couldn’t find the words to write a proper blog post. This week was a good one in some major ways, but it was also a very stressful one. To focus my mind on the positives, I’m joining in with Ten Things of Thankful (#TToT).

1. The sensory room at day activities. I have been relaxing in it a lot lately. There’s a guy who uses it often, but he was off this past week, so I took full advantage of the available room.

2. Tranquilizers. On Tuesday, I was very irritable. I am so glad that the staff offered to give me my lorazepam and it worked.

3. Great news from the care facility, of course. I got to speak to the behavior specialist and support coordinator, which was good. It was great to hear that I will most likely be moving by September 23.

4. Hearing more about the house we’re buying. We got a go on the mortgage and are now waiting to get the keys.

5. My husband having been able to change the days he’ll be off work. He would originally have the week of September 16 off, but since I’ll be moving to Raalte on the 23rd and we’ll get the keys to our house most likely on the 25th, that wasn’t ideal. My husband will now have the week of the 23rd and the week of the 30th off.

6. Nice food. To celebbrate the great news about my moving to the care facility, my husband got us pizza and a tompouce (a Dutch pastry) on Tuesday. On Thursday, I was stressed, so I bought myself a lot of snack food. Still, I enjoyed it.

7. Horseback riding again. Yesterday marked my first riding lesson after the summer break. I rode Morritz again. I didn’t ask about Angie, the horse I previously often rode, who was injured some six months ago. As the weather was relatively good, we rode our horses outside.

8. My stuffed bear. I had a lot of nightmares and vivid dreams this past week, so I am all the more grateful for the stuffed bear my mother-in-law won for me at an animal shelter event last year. I have a ton of other soft toys, but this one is the biggest.

I am also grateful for the extra duvet my husband laid over me some nights back when he realized before me that I’d otherwise feel cold.

9. Painkillers. I’ve been having a toothache lately and had a headache yesterday. They may or may not be related. And yes, my father-in-law is a dentist, but this makes me more wary of going to the dentist (him) with this. Thankfully, paracetamol has been working.

10. My amazing fellow clients at day activities. A new girl started yesterday. She’s nice. So are the others. Most don’t understand that I’ll be moving, so I haven’t told them yet. I’ll be missing them.

What have you been grateful for lately?

Working On Us Prompt: Family Relationships and Boundaries

Posted on by Astrid

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

#IWSG: My Ideal Writing Space

Posted on by Astrid

It is the first Wednesday of September and that means it’s once again time for the Insecure Writer’s Support Group (#IWSG) to come together. This past month has been pretty productive with respect to my writing. I also left my comfort zone a little, writing one poem and learning more about writing. I subscribed to a writing-related newsletter at the end of July and have been enjoying my daily dose of inspiration.

This month’s optional question is about your ideal place to write in the world. If you could choose one place in the world to write your next story, what would it be and why? As it is, I write best when in my room, at my own desk. This desk is exactly the right height. I’ve tried writing while sitting at other desks or tables, but they’re either too low or too high. I also need my own chair, which is just about right for me too.

This being said, I have had my desk in various places. I’ve had it in several of my institution rooms. I had it when living independently in 2007. Now, it is in my room in our current house.

I will be taking this desk to the care facility with me when I move. This means I’ll have to use another desk when at my husband’s and my house. I do have another desk that can be made lower or higher. Currently, it is set too low, but I will ask my husband to make it exactly as high as my other desk. That way, I’ll hopefully still be able to write when at our home.

I usually don’t write well when there’s noise around me. I can’t really even write when music is playing in the background. This makes me glad that the staff at the care facility eventually chose the room further down the hall for me.

I like to type on my external Bluetooth keyboard connected to my iPhone. It has to sit on a laptop case or it’s not in the right position in relation to my Braille display or my hands. I can type on my laptop keyboard too, but currently being used to my Bluetooth keyboard, I prefer that.

As you can see, I don’t fancy writing in some type of exotic place, but I do have a lot of requirements for writing comfortably.