#WeekendCoffeeShare (November 10, 2019)

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

Validating Jane?

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

A Night-Time Crisis

So I really need to get something off my chest. Yesterday was a mostly good day, as you can see from my previous post. However, in the evening, we landed in a pretty bad crisis.

It started out with the evening staff wishing me goodnight at 9:45PM. I still had to brush my teeth, so she asked whether I would manage. Normally I do, so I said “Yes”. When I was done brushing my teeth, my gums hurt from the inflammation and I was considering asking for paracetamol. I mean, I could’ve waited till the pain got severe, as I did the previous night, but then I’d have to bother the night staff.

I also realized the evening staff had left the light on. I had asked her to switch it off (it is a truly stupid switch which I can’t work), but she had asked me how I’d manage without light if I wasn’t ready to go to bed yet. Well, like, how I manage virtually all the time without light. I have light perception, which can be useful but in this case was more bothersome, in that it meant having to go to bed with the lights on. I can write blog posts and do basically everything with the lights off, but I cannot sleep with the light on. So inbetween the argument of whether I would be comfortable in the dark, the staff actually forgot to turn off the light.

As it was only 9:50 and the staff are supposed to be here till 10:15PM, I went looking for the evening staff rather than push the call button. She was gone. Then I pushed the call button. No response. In the next 30 or so minutes, I got increasingly panicked. I heard the buzzer go off so assumed the evening staff either must be somewhere but not care, or she’d left the phone with the buzzer in the house rather than having given it to the night shift. So how would I reach anyone now?

I was very panicked, engaging in self-injurious behavior, screaming and shouting. I was so scared and angry at the same time. If the staff are supposed to be here till 10:15, why did she leave by 9:50?

At one point, I somehow opened the door to leave the unit. Our unit is at the top floor of the building. It is sort of locked, in that my fellow residents can’t work the key to open it. I thought neither could I but somehow I can.

I ran out the door, intending on I don’t know what, going outside or something. My first response in panic is either fight or flight, and in this case I utilized flight quite literally.

A staff from the downstairs unit found me crying at the top of the stairs. Another staff from our neighboring unit came to the rescue too.

It turns out the night shift doesn’t start till 10:30. This is one night staff who caters to the entire facility, so she isn’t physically present on my unit most of the time. Well, how am I going to reach a staff in an emergency if the evening shift leave at 9:50 (or 10:15 in an ideal situation) and the night shift doesn’t come on till 10:30. My staff eventually found the solution of giving their phone to the neighboring unit, where staff is available till 10:30.

Finally, the night staff, who had joined the other two staff in helping me, gave me my paracetamol, plus a lorazepam to calm my anxiety, and turned off my light. Nonetheless, I didn’t sleep till around the second time the clock hit 2:30AM (daylight saving time ending). The night staff, though she hardly knows me as she only works nights, was nice enough to sit by my bedside and comfort me for a little while.

Shark!

Stuffed Shark

So my husband came over today. I had originally planned on visiting him for the week-end, but then I’d have to go home to the care facility by ParaTransit taxi again. You get only 700 km at a reduced rate each year and the one-way drive from my husband to here is 72 km. This means that I can’t go each week for the rest of the year. So my husband proposed to come over for a visit.

We went to IKEA in the nearby city of Zwolle. I was looking for an office chair to use in my corner of our house. The way IKEA is constructed, you need to walk past a lot of other stuff before you can get to the desks and office chairs. This meant we could also check out the lounge chairs. I took my lounge chair (well it was originally my husband’s family’s but I used to sit in it all the time) to the care facility with me and would like a lounge chair at my husband’s house too. We couldn’t buy one right away, but we did see some good, some bad and some really rubbish ones.

At one point, we came across the soft toy aisle. My husband showed me a giant stuffed elephant and then an equally large stuffed shark. The littles were totally in awe! He asked us whether we wanted to buy the shark and we shouted “Yes!”. So we now have a stuffed shark. We took most of our stuffies to the care facility with us, so we’re very happy to have a soft toy at home with our husband too. We joked that of course we have our husband, but well, that’s different.

We also got some nice candy. Some of us were upset because we couldn’t have Swedish meatballs. Not that our husband said so – he didn’t explicitly say they were on offer, but he knew we knew about them -, but we had already had pancakes for lunch and figured it wasn’t healthy to have two meals. Everyone was content again when we got the candy.

We also ate out at a nice Indian restaurant. The food was delicious!

Attachment Issues and Other Ramblings

Hi people, how are you? I hope you’re doing better than I am, as I’m basically feeling pretty crappy. I tell myself I need to enjoy the good moments, good days even, here in the care facility. I believe that if I don’t feel happy here, then the staff could just as easily kick me out and make room for another person. I know paradise doesn’t exist, so can’t I just be happy with what I have?

That’s not the problem though. I’m not looking to leave this place or thinking I can have a better life elsewhere. I can’t. But still, I’m unhappy at times. Then again, isn’t everyone? And yet I beat myself up over it, which leads to more unhappiness, which leads me to beat myself up even more.

At the root of all this seems to be a deep-seated belief that there’s no place I’ll ever fit in, and if I do believe I fit in, the staff won’t agree and will kick me out. I feel as though I have to prove that this place is perfect for me – which it isn’t, of course. But it’s as close to perfect as can be and that’s enough for me. But is it for the people around me?

Last night I barely slept for two hours. At 5:30AM, I accidentally sent out a video call to my husband while trying to distract myself. He called back almost immediately, as he was at work already. He assured me that he doesn’t want to get rid of me and my staff don’t want to get rid of me either. I was happy enough with that that I could sleep.

This morning, a relatively new to me staff woke me up. She asked whether I’d manage getting started on my personal care. Normally, I get some help on Wednesdays, but I was too tired or confused or scared to ask her for help, so I just went about doing my morning routine. I was feeling pretty out of it, but I couldn’t explain.

The rest of the day was okay. I went to the dentist this afternoon for a check-up and because I’ve been having some pain. I have inflamed gums, but other than that my oral health is good. I was told I brush my teeth well, something I attribute to the electric toothbrush my husband gifted me for my birthday. Now I will need to use toothpicks too. One filling that I’ve had for like fifteen years needed replacement, but that will happen at my next appt.

Fatigue (For Lack of a Better Word)

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.

#WeekendCoffeeShare (September 29, 2019)

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

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

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.

💞 Happy Eighth Wedding Anniversary to My Husband and Me 💞

Today is September 19. Eight years ago today, my husband and I said our wedding vows. Twelve years ago today we first met at the bus stop nearest to the university that I could get to without transferring. That first meeting was awkward. I didn’t have good mobility skills, but of course it wouldn’t have been appropriate for me to use this boy I barely knew online as a sighted guide. As a result, I fell off a few steps and dropped my coffee.

My now husband said later that, after this first meeting, he wasn’t sure whether to ask to meet me again, but intuition told him that if he did, a lot more would follow. And it did.

Today, my husband had to work a long day as a truck driver. He originally had this week off, but changed that so that he could help me move to the care facility on Monday and make the move to our new house. He told me in advance not to be mad if he’d not be home by seven. As it turned out, he was home a little before eight. He also got tomorrow off unexpectedly, so our not being able to celebrate our wedding anniversary today is more than made up for soon.

Someone said in a comment on my previous post that my husband is lucky to have me, because at least I consider choosing him above self-care. I must say, I don’t see it that way, but I definitely feel I am lucky to have my husband. I mean, how many people would walk out on their significant others the day they were in a mental crisis? That’s not a fluffy, socially acceptable thing to do, but it’s reality. My staff at the psychiatric hospital had never seen a patient getting married while on their ward before.

The fact that my husband supports me through my decision to go into long-term care, also proves that I”m lucky to have him.

These eight years married and these twelve years knowing each other, have been very different from the traditional couple’s first so many years, but they’ve definitely been worth it at least for me. Without my husband, I don’t know that I’d even still be alive today. Here’s hoping for a lot more years of a happy marriage.