Unmasking…

Posted on by Astrid

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

Hypervigilance in Trauma Survivors #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I want to talk about a major symptom of (complex) PTSD which I struggle with a lot: hypervigilance.

Hypervigilance is an increased awareness of one’s environment and seemingly unimportant details in it. That is, often people who experience hypervigilance constantly scan their surroundings for signs of threat, but that doesn’t mean they’re hyper aware of everything going on. In fact, they often miss out on actually important aspects of their surroundings, such as missing part of a conversation they’re having.

There is a sensory aspect to hypervigilance, ie. increased sensitivity to noise, smells or other sensory stimuli. However, there are also cognitive and emotional aspects to it. People who are hypervigilant due to (complex) PTSD often overanalyze the things happening around them and too easily perceive them as threatening.

I for one commonly overanalyze things that I perceive. It doesn’t help that people often expect me to appraise already overloading stimuli differently based on other factors involved. Like, due to being autistic, I get very easily overwhelmed by loud noises, crowded environments, etc. However, due to both autism and C-PTSD, I also overanalyze my perceptions. For example, I often judge myself for being overwhelmed because, for instance, my fellow residents “can’t help” making certain noises.

People with complex PTSD often experience hypervigilance about other people’s intentions too. I for one am always looking for signs that the people who mean the most to me are going to betray me. It’s not like I want to, but that’s been my experience most of my life.

Hypervigilance can also show up in physical symptoms. An increased startle reflex is part of the diagnostic criteria for PTSD. Many people with (C-)PTSD also struggle to relax even when there are no sudden stimuli or changes to the environment. Which, now that I type it, I realize is nonsense: the environment is always changing even when people who aren’t neurodivergent or trauma survivors or both, do not notice. I last week had a meltdown because I was overwhelmed by the sounds in the living room, only to be told by the staff that it was totally silent. Well, except for a fellow resident’s tablet, the TV, the dishwasher and I’m not even counting the relatively “minor” everyday sounds, like birds chirping outside, the staff station clock ticking, etc.

Anyway, hypervigilance like I said can show up as physical symptoms. Many people experience an increased heartrate, heavy breathing, higher blood pressure, etc. After all, stress (and hypervigilance is majorly stressful) activates the body’s nervous system.

I don’t yet know what can be done about hypervigilance. I follow movement therapy, but so far, it’s incredibly slow-going. It doesn’t help that, like I said above, the world is ever-changing. In other words, even though my therapist talks about baby steps, I know the real world doesn’t work like that.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

#WeekendCoffeeShare (May 27, 2023)

Posted on by Astrid

Hi everyone. Today, I’m joining in with #WeekendCoffeeShare. It’s been forever since I last joined in with this linky, but I thought I’d share some highlights of the past week with you all. I just had my morning coffee, but am probably going to finish this post after lunch or in my 30 minutes unsupported time before my afternoon coffee. For lunch, I’m just going to drink water, but since this is a virtual get-together, I won’t keep you from grabbing a coffee. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that the weather has been a mixed bag lately. Early in the week, temperatures didn’t rise above 15°C and we had some rain, but today’s daytime high is supposed to be 22°C and the sky is clear. Next week, we’re even supposed to get daytime highs above 25°C.

If we were having coffee, I’d tell you I didn’t really get in as many steps as I’d have liked this week. On Wednesday, I had a bad fall while walking. I hurt my knee and elbow and was dizzy for a bit. Thankfully, I only feel my knee a little now. On Thursday, I only managed a few slow and short walks due to the pain though. I did meet my movement goal on my Apple Watch each day.

For the month of June, I’ve signed up for two challenges on the Challenges app. One is a month-long challenge where points are accummulated based on closing each of your three activity rings, while the other allows participants to choose between basing points on steps or closing of the movement ring (I chose steps).

If we were having coffee, next I’d share that I’ve been pretty paranoid about my support lately. I am finding that I look at everything as a sign that the staff are trying to cut back on my one-on-one support hours. Now they say I get two hours more a day than I formally qualify for anyway, so this makes me feel rather, well, off. I can’t see how I can cut back on my one-on-one support hours as is, but I am pretty sure the staff think I can cope with even less than the hours they claim I qualify for.

I mean, I can cope with about half an hour in the communal room playing a game with a fellow resident most days. Today though, I got overloaded by several different sounds (a staff loading the dishwasher, another resident coming into the room and talking loudly to the staff, etc.). While all of these sounds are to be expected in a communal room (though the staff loading the dishwasher could’ve closed the kitchen door), they did overwhelm me. I managed to keep it together relatively well, but did feel upset that my one-on-one staff of the moment didn’t pick up on the signs that I was becoming overloaded. He claimed I could’ve told him myself and that I was making a big deal out of nothing. This further contributed to my thinking that the staff’s aim is to get me to function in the group without one-on-one. Which, of course, I should really aspire for too, but with how overwhelming even half an hour is in that communal room, I can see this just means being confined to my room alone.

If we were having coffee, lastly, I’d tell you that, on Tuesday, I’m going to meet with a behavior specialist for another care home. Like I mentioned before, I really badly want to move out of this home and my current behavior specialist finally approved this last March. They are currently investigating two possible homes here on institution grounds, but aren’t sure yet whether either will be suitable. Wish me luck with the meeting.

I Complained About the Cold

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to share the last thing you complained about. If I have to believe the staff here, it’s pretty much in my DNA to complain. At least, more than one have been calling me dissatisfied as if it’s a personal attribute.

Indeed, I am not naturally all that optimistic. I remember one day in high school my teacher asked me whether the glass was half full or half empty, assuming I’d say half empty. I said I didn’t know, because I didn’t understand the question, if for no other reason, then because there was no half full/half empty glass in front of me. However, even if he’d asked me whether I tended to look at things from a positive or negative perspective, I might not have known. I know now I lean towards the negative, but I don’t see it nearly as much so as others perceive me as.

This morning, one of the staff – a nice staff, usually – called me dissatisfied because I was complaining of the cold. Not the weather, mind you. The temperature inside my room. For clarity’s sake, we aren’t forced to save on heating here (at least, not yet), but the heating had been turned down by her yesterday because it had been hot here. Granted, after several staff complaining of the heat (I didn’t mind, though it was warmer than it should be), I had finally given her permission to turn down the heating. I shouldn’t have.

Two weeks ago, the heating had last been touched, because at the time it’d been freezing cold here due to the heating being broken. After an entire weekend (when the temperatures at night had dropped to -6°C) of no heating, the thing got fixed and I hadn’t dared let the staff touch it again despite it being a bit on the hot side in my room. After yesterday I gave in, it was cold again today. Not freezing cold, but uncomfortably cold to the point of causing me overload anyway.

The staff turned up the heating again – which unfortunately ten hours later hasn’t proven effective yet – and suggested I wear warm clothes. Not that I wasn’t wearing winter clothes already, but apparently I needed to sit in my room wearing three layers of clothing. Plus gloves, as my hands were cold too. I refused. This was what got me to be called dissatisfied. Of course, the staff didn’t tell me to wear gloves, but I did explain that my hands were primarily cold.

I also explained that I was anxious about having to be freezing all weekend again because maybe touching the heating had somehow broken it again. To this, the staff replied that I was assuming the worst. Well yes, I was, but it wasn’t like it hadn’t happened before.

I’m sad that I’m seen as generally dissatisfied even by staff I think are nice. I mean, I know they get a lot of negativity from me about the other staff and occasionally about their own behavior. Recently, I sent one of the nice staff away angrily because she was the fourth staff supporting me that shift. The thing is, the not-so-nice staff don’t take it personally. The nice ones do even though I don’t mean any of my complaints personally. The fact that a staff has made it on my “nice” list, doesn’t mean they can’t ever do anything wrong or, if they do, that they won’t hear about it.

Finally, after writing up most of this post and complaining to my husband about the cold, my husband said I should tell the staff my heating is broken and ask them to call the servicemen if it’s still cold tomorrow. Half an hour ago, the staff who had called the servicemen last time – on a Sunday, because he agreed it couldn’t wait till Monday -, came into my room and I asked him to check my heating. He did and agreed it’s probably broken again, so he’s phoning the servicemen again tomorrow. I’m so glad. When the heating can be made to behave or can be fixed altogether, will remain to be seen.

Mama’s Losin’ It

Gratitude List (October 22, 2022) #TToT

Posted on by Astrid

Hi everyone. I’m feeling very overloaded today, but it’s too early for me to go to bed or I might wake up in the middle of the night and not be able to go back to sleep. Instead, I’m writing a gratitude post. As always, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful I was able to let go of the issue with the staff from two weeks ago.

2. I am grateful for delicious home-cooked couscous, which a staff member who is originally from Morocco shared with me and a few others at the care home on Sunday.

3. I am grateful I beat this same staff member 4-0 in the card game mau-mau again today, but also grateful he beat me on Thursday. I think I told you all last week that he’s learning the game from me, so I love it when he wins (but I love it just a bit more when I win!).

4. I am grateful I was able to try out polymer clay a few times this week. So far, all of my projects failed before I even attempted to bake them, but that’s okay.

5. I am grateful for white chocolate. I consumed quite a bit of it over this week.

6. I am grateful my medication got sorted. It was quite the ordeal last Saturday and I actually called the out-of-hours GP surgery, not knowing that, if my staff said I could cope without meds for a day or possibly two, that meant a doctor had actually said so already. In the end, I got my Saturday morning meds at around 9PM and am now thankfully fully in the electronic medication system.

7. I am grateful for quetiapine. I just took one about half an hour ago and thankfully, it’s calming me.

8. I am grateful for fish. Doubly grateful, in fact. Last Saturday, my staff took me to the marketplace for fish and, this afternoon, the staff ordered fish for everyone at a fish shop in the next town.

9. I am grateful for warm weather. The daytime temperature hardly got below 15°C this past week and, for the past several days, it’s been 18°C.

10. I am grateful for a nice, long walk across institution grounds and through the nearby forest with a fellow resident ant two staff. I regret not having taken my phone with me so that I could have taken pictures.

What are you grateful for?

In Crisis Yet Again #Blogtober20

Posted on by Astrid

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

It’s Just Another Manic Monday #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “Manic Monday” and how appropriate this is today! One of my day activities staff celebrated 25 years working for this care agency. For this reason, the manager and a few of her coworkers from the day center came round for coffee and cake. You see, the day center is still not operating as usual due to COVID-19 restrictions and this staff usually provides day activities at my home now. She did visit her normal day activities group for a bit in the afternoon, where currently another home’s clients do day activities.

Anyway, due to the manager and some other staff coming by for a visit, it was really hectic here this morning. I did enjoy a cup of coffee and some cheesecake, but I was really overloaded most of the time.

The staff had really done her best to make us feel festive. In addition to the cheesecake, we got Airfryer snacks for lunch and candy bars with our afternoon coffee. Another staff had also decorated the home with photos of this staff from throughout her career.

Thankfully, I managed a mid-morning walk after the manic events of the manager’s speech and coffee with cheesecake. That went well, although my accompanying staff’s chatter did get a bit on my nerves.

I spent the afternoon so far relaxing in my room or having coffee with a candy bar. I still need to make a present for this staff, like a soap, but that can wait and of course isn’t a requirement. I did after all contribute to the home’s gift to this staff.

This evening, I intend on checking other blogs and just chilling out in my room. If it’s not raining, I might go for a walk after dinner. I may also read a little. Right now, I’m reading a Dutch book chronicling a year in the life of an obstetrician.

Normally, my Mondays aren’t as manic as today. In fact, I like the hustle and bustle of it, compared to boring Sundays. After all, I spend a lot of my Sundays in bed. On Mondays, day activities start back up, so I normally go for a walk or two and/or make a soap or some other craft or DIY project.

Of course, compared to parents or people who work, I’m not as busy even on a Monday. I mean, I still get more than enough time to relax and even the activities I do during the day, don’t feel like chores or work. I do, however, feel easily overloaded by lots of stimulation, so it’s exactly right the way things are right now.

#Blogtober20

#WeekendCoffeeShare (July 19, 2020)

Posted on by Astrid

Hi everyone on this sunny Sunday evening. It isn’t hot or too sunny here, but the sun does shine and it’s warm. Around 22 degrees Celsius. I like it. Today, I’m joining in with #WeekendCoffeeShare. Grab a cup of coffee, tea or your favorite soda. I think the staff also put some water in the fridge to be cool. Let’s catch up.

If we were having coffee, I would share that the week started off rather rough. Like I wrote on Monday, I was feeling rather overwhelmed. Thankfully, as the week progressed, my mood and general wellbeing got a little better. I still experience some level of pain on a daily basis. Not 100% sure why, but at least right now it’s manageable.

If we were having coffee, I would tell you about the physical therapy appt I had on Wednesday. The physical therapist noticed I was pretty tense all over. She might give me some exercises and is going to massage my back next week. She also put tape on the inside of my knee, because I overextend it. I have known I do this for nearly 20 years, but thankfully it didn’t cause significant pain until recently.

If we were having coffee, I would tell you about all the beautiful jewelry-making supplies I received in the mail yesterday. I had ordered them from a children’s craft supplies store that I didn’t know before. When the things got shipped and yet I didn’t receive them the next day, I checked and it turned out they had to come from England or something. As such, it surprised me that they did get here on Saturday. The best part is a collection of 90 silver-colored charms. They are truly beautiful.

If we were having coffee, I would share that my husband took me to our home for a night yesterday. We got takeout pizza at my favorite pizza chain. I think my husband entered my E-mail address, because I got a lot of advertising in my inbox today. That’s no problem though.

If we were having coffee, lastly, I would tell you excitedly that I rediscovered at least part of my gemstone collection. I had been wanting to order new gemstones about a week ago and had been thinking or had dreamt that I’d left my collection at the student apartment when I moved out of there in 2010. Turns out my husband has two of the four boxes I had at our home. I guess the other two are either at my parents’ or indeed gone.

I loved telling my husband about all the gemstones in the collection. Sadly, I forgot to take pictures and didn’t take the collection with me to the care facility. I might select some stones to bring here.

How have you been?

I Am Overwhelmed

Posted on by Astrid

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.