Dream #SoCS

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

#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?

Gratitude List (November 9, 2019) #TToT

Oh my, it’s been forever since I participated in Ten Things of Thankful. I think I participated once since moving to the care facility. The thing is, I have a ton of ideas for blog posts on my mind but only so much time to complete them. I mean, maybe a gratitude list should be one of the easier ones on my list, but oh well. I don’t know. I don’t want to make up excuses, so here’s my gratitude list.

1. Eating out with my husband and sisters-in-law. The sisters-in-law had offered it to us as a present for us having bought a house. We went to an all-you-can-eat restaurant. My husband thought he wouldn’t particularly like the food, but he did and I loved it. As those who know me well will admit, gluttony is my main deadly sin, LOL.

2. Great reading. I don’t nearly spend as much time reading as I’d like, but I do love the books I’m currently reading.

3. An increase in mental clarity and energy. I’ve been doing better in the brain fog department lately. In fact, I can usually manage to be quite active either physically or mentally most of the time during the day.

4. The sensory room at day activities, including its music player. It is connected to the waterbed, so that the music almost surrounds you when you’re lying on the waterbed.

5. A nice behavior specialist. On Tuesday, I had my review at the care facility. It went okay, but after it, I did experience some trust issues particularly with my day activities staff. She called out for the behavior specialist to talk to me some more and the issue got mostly resolved.

6. Sunshine. Of course, it’s fall here, so we don’t experience the great weather of summer, but we did get some relatively sunny days. It was nice being out in this weather.

7. My former psychiatric nurse practitioner calling me to check in. He also finally sent me the form he’d sent to the assertive community treatment team in my town, since I hadn’t read it yet. It was good to talk to him for a bit.

8. A good intake interview with the nurse practitioner and social worker from the new team. I was able to explain myselves quite well. My current diagnosis apparently is unspecified personality disorder with dissociation along with autism spectrum disorder, but I was able to go into some detail about the extent of the dissociation. It was good also to have a staff from the facility with me. This team is more concerned with one’s individual needs for support than with one’s diagnosis.

9. Walking. When I first came to this facility, I didn’t expect to get out and about much, but I usually do manage at least 30 minutes a day even now that fall has truly set in. I tried to reconnect my Fitbit when I found its charger earlier this week, but the app seems to have locked me out. I don’t really care though.

10. Sleeping with music on. On Thursday, I was so tired from the intake interview at mental health that I slept most of the evening away. I slept with a lovely playlist on Spotify playing on my phone. I am still considering getting myself a music pillow.

11. My husband. He’s so nice! It’s hard not seeing him as much as I used to, but he showers me with love each time we do see each other.

What have you been grateful for?

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.

#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.

💞 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.

Freewrite on My Transition Into Long-Term Care

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy

Working On Us Prompt: Family Relationships and Boundaries

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

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

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

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

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

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

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