What Day Is It Anyway? (March 27, 2020) #WDIIA

I’m once again doing a #WDIIA post. I skipped them on Wednesday and yesterday, because I didn’t feel like writing the same old shit again and again. Today I was seriously confused about what day it is. The staff awoke me at around 8:30AM and said I had to shower. I normally shower on Mondays, Wednesdays and Fridays if I have no outside obligations such as visiting my husband. Obviously right now I don’t. On the other days, I do a quick wash. Now I seriously thought it was either Thursday or Saturday, but it’s Friday, yay!

I must say I awoke some 30 minutes before that from a really horrible nightmare. In the nightmare, I somehow left the facility to visit my husband and then couldn’t come back because of the lockdown. It ended with my husband being angry with me for wanting to go back to the facility at all.

The nightmare was somehwat realistic, in that indeed the new visiting rules that have been put in place for care facilities say that, if family take a client home, they cannot return to the facility until this COVID-19 lockdown thing is over. Family or others cannot visit the facility either unless in exceptional circumstances such as if a client is terminally ill. Obviously this means I won’t see my husband for another while still to come.

It’s the “working” Friday, so we did get day actiivities at home today. This meant, as it has consistently for the last while, that I did go outside twice for walks. I went for another long walk in the evening. As such, I reached 10K steps again. I looked up how I compare to my sister, since we’re Fitbit friends, and I took nearly 1.5 times her steps over the past seven days.

It’s now past 9PM. It’s the weekend now, so we had chips and soda this evening. Tomorrow morning, I’m going to have bread with a boiled egg on it for Breakfast. We get boiled eggs delivered to us by a former staff here who has her own chickens. I assumed she wouldn’t be allowed to come now that the facility is in lockdown, but maybe she puts the eggs at our doorstep and then leaves. So at least that tradition can continue for now.

How was your day?

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!

Welcome to Another Day #SoCS

Welcome to another day. What day is it anyway? I have to check my iPhone to be sure. It’s Saturday, March 21, 2020. Here I almost wrote it’s March 20. Where does time go?

It’s the first week of whatever this self-isolation thing is called here in the Netherlands. It’s not a complete lockdown, but there’s not much we can do anyway. I went to the supermarket today, only realizing later on that if I’m allowed to go there and be relatively close to other customers, I should be allowed to see my husband too. Or is that flawed logic? I mean, no-one is really keeping the five feet distance that’s recommended.

I miss my husband. It dawned upon me last Thursday that if I do fall seriously ill with COVID-19, my husband won’t even be allowed to see me. I know, I’m in good immunological health, so I most likely will just get some nasty flulike symptoms, but still. It sucks not being able to be close to my husband.

Then a voice in my head said: “But you chose to leave him.” I didn’t leave him, as in divorce or abandon him. We’re still married and planning on staying so for life. But I did go into long-term care when I wasn’t literally dying living with him. I was struggling to keep up, but I did have food to eat and could, for the most part, get ahold of something when I was hungry.

I bought a bag of liquorice and ate it almost in one sitting today. Then I had a terrible stomachache. I don’t know why I decided to eat all the liquorice. I guess some part of me is feeling rather awful.

Yesterday, a little (inner child, for those not familiar with dissociative identity disorder) wrote to an E-mail list. I don’t know what she wrote and haven’t checked the responses.

Generally, we feel pretty calm, but I guess there are parts of me who are severely triggered by something about this COVID-19 crisis. Other parts are just bemused. It’s a strange world we live in indeed.

I’m linking up with #SoCS, for which the prompt today is “Welcome”.

COVID-19 Again

I was rather late dedicating a specific post to COVID-19. As such, you might think that not much has changed. However, then you’d be wrong. I guess our government was late with the infection spread prevention measures too. Then again, we didn’t have cases of the virus here in the Netherlands until some two or three weeks ago I think. I may be mistaken, as I hardly ever watch the news.

As such, I did not hear the prime minister’s two press conferences, one last week Thursday and one on Sunday. I did not hear his address to the public on Monday either. I did not watch the Lower House debate yesterday, in which the public health minister apparently fainted. I wonder how they did the debate, given that gatherings are now prohibited.

I did hear some about the news from my family and staff though. My sister called on Sunday, wanting to catch up. She works in a restaurant, so she’s out of work now. Thankfully, her husband works in an office job, so he can work from home.

My mother called on Monday. My parents are both retired, so they don’t have to worry about unemployment. However, my mother is 64 and my father is 71, so I do worry about their health should they catch the virus.

My husband’s work is still going on for now. He works as a truck driver in what is apparently a vital part of transport.

Like I mentioned on Monday, the day center I go to closed yesterday. The day center staff are now coming out to our homes to provide us with activities. I took some of my stuff from the day center with me to the home on Tuesday. Some staff even transferred my elliptical to the home.

Thankfully here, going outside for walks is not yet prohibited. I hope it won’t ever be. I’ve been going for walks with staff twice to three times a day each day now. I don’t need to worry about not getting my physical exercise for now.

I haven’t been in a grocery store yet since the measures took effect, since my facility orders groceries online. However, my husband said yesterday that the grocery store was completely out of regular bread, but it still carried lots of raisin bread.

I do feel that we live in a rather interesting time. It feels very odd, but in a way it feels comforting knowing that we have the Internet now.

Mama’s Losin’ It

#WeekendCoffeeShare (March 15, 2020)

Hi and happy Sunday evening to you all! I’m joining in with #WeekendCoffeeShare, although I’m not inviting anyone over for a real coffee. Like I said yesterday, it was recommended that my husband do not visit me for the duration of the anti-coronavirus measures. Two of my fellow clients still got visitors today, so I was feeling a bit jealous. Then this evening after the prime minister held another press conference, the staff decided people can’t visit here unless they really need to at all. Day activities are still going on as far as I know, but that might change. So anyway, you’ll need to grab a virtual cup of coffee.

If we were having coffee, I would tell you how amazed I am at the virtual community building this coronavirus pandemic does. I mean, never before have I felt so much in common with my blogger pals from all over the world. Of course, I have a handful of blogger friends with whom I have a lot in common anyway, but with the #WeekendCoffeeShare community and the wider blogosphere in general, I don’t. Now we all over the world share in a common experience, no matter how tragic.

If we were having coffee, I would tell you that this week has been pretty awesome in the exercise department. Though I only went on the elliptical once and never reached my daily step goal, I did get 316 active minutes over the week. That’s more than five hours! I did go for regular walks almost each day. Here’s hoping that the coronavirus crisis won’t ever keep me stuck indoors. I’ve heard in Italy people aren’t allowed to go out on the streets at all, but they sit on their balconies anyway.

If we were having coffee, I’d share that I did some great reading over the past few days. I’m not reading as much as I would ideally want to, but I’m at least picking up books again (figuratively speaking, that is, as I don’t raise my Braille display while reading eBooks).

If we were having coffee, I would share that my husband has been making great progress on living room renovations. We at least used to have softboard on the ceiling, which isn’t fire-resistant. My husband told me he took it all off.

He is a truck driver, so despite the coronavirus management measures, he’s expected to go to work tomorrow. He said it’d be crazy.

If we were having coffee, lastly I would tell you that I spoke to my sister on the phone this evening. My sister works in a restaurant, which is closing for three weeks at least. Her husband can thankfully work from home.

I hadn’t spoken to my sister in a while. She has a six-months-old daughter. I was amazed to learn about my niece’s development. I last saw her in November and apparently she’s making great strides.

How are you all doing amidst the coronavirus craze?

COVID-19 Worries

The coronavirus came to the Netherlands a few weeks ago. Yesterday, we had the first case in the care facility’s town. The care facility hasn’t yet been affected as far as I know, but still, I grow more scared as the days go by.

I’m not scared of falling seriously ill or dying from the virus. Though some of my fellow clients are in their sixties, we don’t have anyone in my home who is otherwise at risk of serious illness or death as far as I know. I am not really sure whether I should worry about my family in this respect. So far, the thought has only fleetingly crossed my mind.

What I do worry about though is the consequences this will have for our society at large. I worry about people stockpiling food. I know my husband got some extra stuff a few weeks ago already when he saw it coming.

I worry about another economic meltdown. My husband has a pretty secure income, having just been hired indefinitely at his job a month ago. He might be forced to take time off, leading to a significant decrease in income, but he won’t be jobless. I am not sure about my income, as I’m on benefits. I don’t know that I will be able to handle yet another round of budget cuts to health care though.

More importantly in the short term, I worry about the need to isolate if you’re infected. What if I get the virus and need to stay in my room 24/7 for two weeks, not being allowed any human contact? Some other blogger idealized this by writing they’d finally have time to read all the books and binge watch all the Netflix series they wanted. As much as I’d like to escape the day center at times and just hide out in my room, I don’t think I could make this work for two weeks straight.

I also worry about staff needing to self-isolate if they get infected. Will this mean there won’t be staff to care for us? My staff has been trying to reassure me, but the letter sent out to clients’ family yesterday, had no information about what if the virus enters the facility in it. Which seems to be more of a “when” than an “if”.

I’m linking up with today’s RagTag Daily Prompt, for which the word is “Isolate”.

Monday, Merry Monday!

Today is a pretty good day. Of course, I did experience some anxiety while at day activities, but it was manageable. One of the reasons I was anxious was the fact that a new client was supposed to come to our home today. This woman isn’t going to attend my day activities group, but somehow this got me thinking of what if things change at my group and I get less care. Ultimately, the client’s move in was deferred for now for reasons unrelated to me.

I took a walk in the morning. In the afternoon, I went on the elliptical for twenty minutes. I struggle to make myself exercise, but I can tell it’s definitely helping to lift my mood. I get a lot of satisfaction from seeing my stats on my Fitbit activity tracker. Today, I managed to get 59 active minutes and get 250+ steps an hour for six out of nine hours between 9AM and 6PM. I took a short walk in the evening too.

In the afternoon, I also played a card game similar to Uno with my assigned day activities staff. I won all three games. When my husband and I were in the early stages of getting to know each other, we played this game a lot. Then we forgot about it or did other things. My day activities staff bought a deck of cards for me a few months back and I’ve played games a few times.

I read some Wikipedia entries this evening. Read up on the coronavirus outbreak. The coronavirus in some ways both scares and fascinates me. I mean, I heard there’s at least one confirmed case in the nearby town my husband and I visited on Saturday now. I’m not afraid of getting seriously ill if I catch the virus myself, but all the measures to prevent spreading of the disease do scare me. As far as I know, my care facility doesn’t have a plan on what to do if there’s an outbreak here. I do worry about lots of staff falling ill if there is. Back when the Mexican flu pandemic happened in 2009, I resided in the psych hospital. It didn’t hit the hospital, but if it had and lots of staff would fall ill, management and clinicians would’ve been expected to work on the wards.

As a side note, my iPhone’s spell checker still doesn’t recognize the word “coronavirus”. I think that’s funny.

Today I Feel…

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Taking a Risk

Today I’m joining in with Five Minute Friday (FMF). The prompt this week is “Risk”.

Last month, like I shared in passing on this blog, I finally opened up to a behavior specialist at my care facility about my struggles. I was really putting myself out there. In my mind, I took a huge risk, because I felt that if I was open about what I really needed, I’d be kicked out of the care facility. I wasn’t.

Then two weeks ago, as I discussed my issues with my community psychiatric nurse (CPN), she started to suggest I live in an apartment building for autistic people. That didn’t sit well with me. I mean, I don’t care who my fellow clients are as long as I get the support I need and I won’t get that in an apartment building. I mean, of course I do somewhat care about my fellow clients, but not in the sense that I need to be able to get along well with them. They aren’t my friends, after all.

I still feel I’m taking an immense risk by opening up about my feelings. I did so again last week, when I asked the staff at my facility to ask the physician for a script for some tranquilizer. The reason is that I’m due to have an old filling repaired at the dentist’s next week. The area surrounding the tooth is already inflamed and I experience considerable pain from it, so I know it’s going to be hard going in and having it fixed, despite the option of getting a topical anesthetic.

So I put myself out there again and asked for something to calm my nerves. Initially, the doctor told me to take 0.5mg lorazepam. Well, that’s not going to work. So I felt off again, like I was being a drug seeker and a burden. I’m used to being seen as a burden, after all.

Being genuinely open about my feelings, my needs and even my wishes is a huge accomplishment for me. I’m totally used to being judged. After all, if people really see me, aren’t they going to discover how wicked I really am? Apparently not.