Choosing Love #SoCS

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that my spouse is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love my spouse more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my spouse to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my spouse anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.

Looking Forward To…

Today’s Five Minute Friday prompt is “forward”. Let me share what I look forward to.

I look forward to seeing my husband tomorrow. The visiting rules for nursing homes were relaxed in prime minister Rutte’s latest speech on Tuesday. The new regulations wouldn’t take effect till next Monday, but my care facility decided to allow visitors from this Thursday, the day of Christ’s ascension and hence a bank holiday, on.

There are still strict guidelines. Visitors cannot touch clients or even be within five feet distance. We’re not allowed to travel in the car with our visitors or go to public places such as shops or snack vendors.

My husband was a little disappointed at the strict guidelines, and I wholeheartedly agree. Of course, I want to hug him too. After all, we haven’t seen each other in real life in over two months. Too bad we can’t at this point. However, it’s better than nothing.

I look forward to hopefully spending some good time with him. Hopefully, of course, the rules will be relaxed even more soon. That’s still unknown though. As far as I know, our care facility is already less strict than what Rutte said, as he said only one person per client can visit. Our facility allows two at a time. Not that I need that, as my parents or in-laws are a long way from visiting me, but oh well.

Wow, I actually finished writing this in five minutes flat. Thanks so much for reading.

Gratitude List (May 16, 2020) #TToT

Goodnight everyone. It’s past 11PM here and I can’t sleep. I’m feeling rather hopeless. To cheer myself up, I’m joining in with Ten Things of Thankful. It feels like forever since I last did a gratitude list, even though I did one two weeks ago. Anyway, here goes.

1. Spotify playlists. I already mentioned the Cardio playlist on Thursday. Today, I discovered the Harp Music for Sleep playlist. It wasn’t created by Spotify staff, but whoever created it is awesome! I just tried falling asleep to it. That didn’t work yet, but it definitely helped me relax.

2. Lorazepam. As we speak, I’m recovering from a rather bad crisis. After an hour-long crying fit, I finally asked the staff to give me a PRN lorazepam and it helps at least a little.

3. Dancing. I mentioned this already on Thursday. Today I was in a rather low place and felt like lying in bed all day. I did manage to fit some dancing in though.

4. Pretty good food this past week. I had boiled potatoes only once and the pasta with tuna sauce I had today was truly delicious.

5. Whipped cream custard. To top it off, we had whipped cream custard for dessert today.

6. Insight Timer. Like I said earlier today, I plan on making meditation part of my daily routine. I listened to a body love meditation this evening. The instructor’s voice was a little off to me, but it was a great meditation.

7. A lovely card. Last Thursday, I got another card from the friend who lives in another home in our care facility. She had previously given me an Easter card. Now the card had written in it that she hopes to see me soon. (For context: due to COVID-19, we are currently only allowed to interact with clients and staff for our own homes.) The card was handmade and truly lovely. I will send her one (though not handmade) probably tomorrow.

8. Possibly seeing my husband soon. Currently, we are not allowed visitors at all due to COVID-19. Management though has said they’ll work out a plan on visiting next week. This may mean we need to see our visitors in an assigned room and may need to keep our distance, but anything is better than no visits at all.

This is all I can come up with right now, but it already helps. What have you been thankful for lately?

Three Years Out Today!

Yay, I’m three years out of the looney bin today! In a way, I’ve come so far. I’ve genuinely tried living independently with my husband. I mean, each time I was in a crisis in 2017, I told the consulting psychiatrist seeing me in the hospital that I was fine going home. I asked for more help each time, which I was given. This little (or not so little) voice inside my mind still tells me those overdoses were manipulative and I should not have gotten the help I asked for. They were impulsive each time, but at the time of taking those pills, honestly I didn’t think: “If I do this and survive, I’ll ask for more help.” Truthfully, I didn’t think much at all.

Then in early 2018, I had a crisis at day activities. That was what started me on my journey of admitting I truly couldn’t – or wouldn’t, as this not-so-little voice tells me -, live independently. At first, when the Center for Consultation and Expertise consultant asked me what I wanted, I said I wanted to live close by a living facility so that I could walk over or call for support. On September 20, 2018, I eventually told my support coordinator that I’d really want to go into a living facility with 24-hour care. She then called the consultant, who was still willing to help us on this journey.

We filed the request for long-term care funding in December of 2018. It was denied on February 27, 2019 on pretty weird grounds. We appealed and our appeal was granted on June 4, 2019 on actually about as weird grounds. I mean, the Long-Term Care Act fails to recognize the implications of multiple disabilities, but how the appeal lawyer managed to find a workaround, still baffles me. I don’t care though, as unless the law changes, we won’t have to apply again.

And here I am, nearly eight months into living in the long-term care facility in Raalte. Still, this not-so-little voice nags me each time I try to open up about my needs. My mother’s voice speaks to me again. When I’d just landed in crisis in November of 2007, she called me to reprimand me about going into the psych hospital. “You can’t even wipe your butt without your support worker’s help,” she said. It wasn’t true then and it isn’t true now, but I feel ashamed each time I ask for help, particularly with personal care stuff.

I had a session with my CPN from mental health this afternoon. I do an eHealth module on self-image, so we got talking about that. I got to say that one of my main reasons for having a negative self-image, is that each time I think positively of myself, or validate myself, this not-so-little voice tells me again that I’m manipulative. This seems to be at the core of many of my issues and yet I cannot even say rationally that it is certainly not true.

#WeekendCoffeeShare (April 26, 2020)

Hi all, how are you all doing on this fine Sunday evening? I just had a drink of my favorite soft drink, called Dubbelfrisss. I had my favorite flavor too, apple and peach. I also had some chips. If you’d still like a cup of coffee, I’m sure I can make some for you. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I would tell those of you who follow me from the coffee share linky that I’m rather active in the blogging department. I’m still going strong with the #AtoZChallenge. I in fact still have a long list of things I want to blog about even after this challenge is over. I really hope the writing juices keep flowing.

I did downgrade my WordPress plan from Premium to Personal. I, not being very tech savvy, can’t use most Premium features anyway and I don’t need the upload space, as I hardly ever post images. The only thing I used from the Premium plan, was Google Analytics, which was rather depressing.

Also in the tech department, I’d like to tell you that I’ve been struggling for weeks to get an eHealth app called Minddistrict working. Somehow, the E-mail that should have been sent to me to sign up, didn’t reach me. My CPN from mental health contacted some guy in IT about it, who replied rather bluntly that his role is not to teach clients to look in their spam folder. Well, if that had been the problem, my CPN could have told me. I’m not stupid! I eventually contacted my hosting provider, who want to look into it but need the headers of the bounce message Minddistrict should have received. My hosting provider was trying to be very helpful, but still the whole thing frustrates me to no end.

If we were having coffee, I would tell you that I reached my 10K steps three out of the seven days of this week. On two more days, I got over 8K steps.

I also got weighed in on Thursday. I didn’t use the same scale I normally use, because that’s at the day center. As such, my results may not be accurate. However, if they are, I lost over 1kg. According to this scale, I just about crossed the line back from obesity to overweight. Yay!

If we were having coffee, I would share that the client who came to our home as an emergency placement two weeks ago, left again yesterday to go to a more suitable home.

If we were having coffee, I would share that I’ve been exploring personality traits a bit more. Like, I’ve joined some Facebook groups for what I think is my MBTI personality type. Most other people see me as INTJ, but I honestly think I’m more INFJ, as the feeler/thinker dichotomy is based on how you make decisions. Note that I learned in psychology class in college that one changes personality type about every month if dichotomous scales are used. I’m a clear introvert, but have no strong preference on all three other determiners. I’ve heard cognitive functions can make the MBTI more reliable, but I find most tests that include that pretty inaccessible.

I also have been exploring the concepts of HSP and empath. I read Elaine Aron’s book The Highly Sensitive Person in Dutch back in like 2006. I downloaded the 2013 English edition on Bookshare a few days ago and got some books by Dr. Judith Orloff too. It does remind me that, when the Dutch translation of one of Aron’s books first came out in 2004, my father read me a skeptical article in the newspaper about everyone needing labels nowadays. He said I was an “asparagus addict”, making a bad pun on the Dutch word for asparagus being similar to Asperger. That got me to stop self-identifying as autistic. Well, I guess I don’t care now.

What have you been up to lately?

A New Client Came to Our Home

Trigger warning: mentions eating disorder behaviors
So a new client came to our care home yesterday. It was completely unexpected also to the staff. They didn’t hear she was coming till Friday evening. She has some form of brain injury, dementia and she broke her hip, which is why she had to come here. She lived independently until this. She seems okay, but due to her dementia she needs a lot of support. This did upset some of us, particularly Rachelle. It completely wrecked with her sense of structure and also the trust she had in the staff.

Today we had an Easter dinner. We had had the choice between pizza or fries. We chose pizza, but weren’t sure about it after all, as everyone else got fries. This further upset us, particularly Agnes. Agnes was feeling off, so she wanted to binge, but the staff prevented her, saying she was full already. This led her to a teenage tantrum.

Then once we talked to her about the importance of sticking to a somewhat healthy diet, she wanted to purge. Thankfully we were able to talk her out of it. Then however Rachelle took over again, with me (Eleanor) being present too. We were able to articulate our feelings to some extent.

Part of the problem is Agnes wants to be independent and make her own choices, including unhealthy ones, but Rachelle really needs more support than we’re currently getting. Thisdispute between them was also triggered by the new client getting pracctically one-on-one support all day, while we were in our room by ourself a lot. There is an extra staffer for the new woman, but we still feel like a burden.

We talked to our assigned staff about maybe making some form of communication cards that don’t require speech, so that Rachelle (and others) can ask for help when we can’t quite talk. We also talked about us getting a more structured daily routine particularly on week-ends.

We’re not sure this will help, but we’ll see.

Eleanor with some others chiming in here and there

#WeekendCoffeeShare (April 5, 2020)

I more or less abandoned the What Day Is It Anyway? posts when A-to-Z started, but I wanted to write a check-in anyway. I am joining in with #WeekendCoffeeShare, although it’s a bit late for coffee. I did have a cup of decaf about an hour ago. I also just had a nice orange-pineapple-guava drink. I am not a big fan of fizzy drinks, but thankfully usually we have some non-fizzy soft drinks or juice in the fridge for week-ends.

If we were having coffee, I would ask you all how you’ve been doing on your third week of lockdown. I had a pretty good week. It was better than last week. Last week, after all, I landed in some crises due to missing my husband and all the change that is brought on by this COVID-19 thing.

If we were having coffee, I would share that on Monday, my home’s manager came to talk to me. I was scared at first. Thankfully, she came to reassure me that I won’t be kicked out of the facility for having challenging behavior. That was quite a relief to me.

If we were having coffee, I would share that I made delicious crispy chicken with the staff intern at day activities on Tuesday. I made them with dorito chips for the crisp. I think I’d prefer them with slightly more spicy doritos, but I had intentionally picked the cheese-flavored ones, as I normally don’t like the paprika or chili-flavored ones.

If we were having coffee, I would share that I didn’t do as well on my step goal as I did last week, but I still managed to get to 10K steps once and reached over 8K steps on three other days.

If we were having coffee, I would share that I struggled a bit with health anxiety at the end of the week. Like I mentioned in passing in one of my A-to-Z posts, I’ve been convinced for years that, once I’d find a suitable living place, I would get a serious illness and die. This caused me to feel some intense anxiety when I had some health symptoms. Thankfully, I was able to talk it through with my staff.

If we were having coffee, I would tell you that I would originally have had a phone appt with my community psychiatric nurse from mental health last Friday. I waited for twenty minutes for her to call and then decided to call the secretary. Turns out my CPN was off sick and the secretary had forgotten to tell me. Thankfully, I didn’t have a face-to-face appointment.

Because I was struggling a bit, my staff arranged for me to have a phone check-in with the facility’s behavior specialist. She was pretty good at calming my nerves. She reminded me to look at today only. I won’t die today and I won’t be leaving the facility today. That was helpful.

If we were having coffee, I would share that I’d been trying to record a video and then take a picture of myself for my husband. I reasoned he may like to see me now that he can’t come here. We don’t normally video call or anything, so he hadn’t seen my face in a month or so. Unfortunately, the picture I took showed my eyes and nose only. I wonder how other totally blind people learn to take pictures. Anyway, I finally had my staff take a picture of me. In this picture, I’m holding my stuffed panda. I often cuddle it when I miss my husband, because the panda is the largest soft toy I own. No, my husband isn’t fat like the panda, LOL.

How have you been?

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”.