#WeekendCoffeeShare (June 30, 2019)

Posted on by Astrid

Hi all and welcome to another post in the #WeekendCoffeeShare. This week has been mostly good. I just had a cup of green tea once again, so have a cup with me and let’s catch up.

If we were having coffee or green tea, I’d share that this past Thursday was my birthday. I turned 33. I usually look forward to my birthdays, even though my wishlist is usually rather useless to my family. I love the gifts they give me anyway.

I had almost a full birthday week really, as I had visitors each day from Thursday up till today.

On Thursday, my parents visited and we had dinner at a restaurant called Paddy’s. I expected Irish traditionals, but the music that was played was 1980s Dutch pop. I liked the food though. I had a burger. My father had a lamb’s stew and my mother and husband had fish.

On Friday, I celebrated my birthday at day activities and my parents-in-law visited. I got a lovely sensory soft toy. It can, like the sensory cat I got from my sister two years ago, be warmed in the microwave and then smells of lavender.

Yesterday, my sister and brother-in-law visited. My sister is 30 weeks pregnant tomorrow, so I just had to feel the bump. They gave me new sandals.

Today, my two sisters-in-law visited. They brought me lovely smelling body care supplies. One of them had also made a cheesecake, which was yummy!

If we were having coffee, I’d also share that all the visitors have been looking at the information for the houses we might be offering to buy. Other than the one we saw last week, we visited another house and two apartments this past week. We’re still undecided as to which to place an offer to, if any, and of course, this is none of my blog readers’ business.

If we were having coffee, I’d also share that I met with a care consultant for Visio, one of the two blindness agencies, last Wednesday. This did lead to a little argument with my husband, as he thought I may want to live in their facility that’s nearly two hours away. I did decide then that, even though my husband wants the best for me, being close enough that he can visit each week-end, is more important to me than finding a good placement.

If we were having coffee, lastly I’d share that the oak processionary is no joke. When I first heard of it in the late 1990s, I didn’t worry. Neither did I earlier this summer when I heard it was in my area. I thought people were overreacting to it. Well, now that I have a terribly itchy rash all over my body, I can say it’s serious.

What’s beeen up with you lately?

Four #SoCS

Posted on by Astrid

My husband and I like the number four. The reason is that the Dutch word for four, “vier”, is also the Dutch word for “celebrate”. One day when my then boyfriend and I were walking in a forest near his home, we went up a hill and he proposed we celebrate getting on top of the hill with a kiss. A little later, we saw the number four written on the path or something and he said four means to celebrate with a kiss. This is how we ended up making up the word “fouring” for kissing.

We played a lot of card games back then. This was in 2008, when I was still inpatient on the locked psych ward. We didn’t really know what else to do. So everytime a four came up in our card games, one of us would say that meant we had to kiss.

We got married on the day we knew each other four years exactly. Actually, the wedding ceremony was at 3PM. That had been the time of our first date too. It wasn’t because we selected the time, but it was quite cool anyway.

I like to remind myself of these beautiful moments. My husband gave me this little bride and groom that had been on top of our wedding cake. He dug it up from the attic the day after we had a little argument last week about me thinking I might go into supported housing nearly two hours from him. I liked the reminder. I love my husband! I don’t want to ever leave him. I don’t want to live too far from him. My marriage trumps my need for good care.

This post was written for Stream of Consciousness Saturday.

The Summer After High School

Posted on by Astrid

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

#WeekendCoffeeShare (June 23, 2019)

Posted on by Astrid

A lot has been floating through my mind today, but until I decided to participate in #WeekendCoffeeShare again, I had no idea how I was going to convey my thoughts into a blog post.

Like last week, I’m having a cup of green tea as we catch up. I love green tea, more so than coffee. I must say though that I’ma bit addicted to coffee. I drink it more to get energized or out of habit than because I truly like it.

If we were having coffee (or green tea), I’d share how I’ve been doing with respect to finding a living facility. On Tuesday, I had an appt with the care consultant for a facility with my current care agency. Because he isn’t in a position to decide whether I’m a good fit, I’ll have to wait for him to discuss my case with the behavioral specialist and manager. He said he’d call my support coordinator next Tuesday, but wasn’t sure whether he’d have any news by then yet.

Because I wanted to remain active, my support coordinator has been contacting some other agencies. We started with the two national blindness agencies. Bartiméus has living facilities about an hour’s drive from my current home. Visio’s living facilities are all at least 90 minutes away. Visio was the first to return my support coordinator’s call and I have a meeting with them next week.

My husband was a little sad, as he thought I want to live in Visio’s facility that’s nearly a two-hour drive away. Of course, I want to be as close to my husband as possible, but I didn’t know how to go about finding a suitable living facility. My support coordinator is going to contact other agencies closer to my current home next week. These are not for the blind, but oh well.

If we were having coffee, I’d also share about our house-hunting experience. The visit to the house on Tuesday was okay, but after reading some reports on it, we decided not to go for it after all.

If we were having coffee, I’d share that my husband and I had lunch at a pancake restaurant today. I had a pancake with blueberries, while my husband had one with raisins and bacon as always.

If we were having coffee, I’d also share that the screen reader company finally called to let me know I could get a new version of JAWS, my screen reader for Windows, covered by health insurance. It is also about time for a new Braille display, he said, and they could let health insurance pay for both in one go. This means that after an eighteen-months-long wait, I may finally be able to get a PC with Windows 10 and the screen reader I love. Of course, I already have a Mac and hence I told the company rep I had to think of it.

My husband was critical at first. He asked which I’d get rid of if I had to choose one: my Mac or a PC with Windows 10 and JAWS. I said I’d get rid of my Mac. I mean, I’ve had it for nearly half a year and still struggle to use it. Other blind people say that’s normal, but I really don’t want to spend that long getting used to a computer. I mean, that’s how long it took me to get used to my very first PC! So my husband offered to get me a laptop with Windows 10 and all if he can have my Mac.

I have been thinking it over and the only thing I can do with my Mac that was a pain on PC was using a good feed reader. Then again, I can’t get used to the way Safari works on Mac, so if I want to actually interact with feeds, I’ll still prefer my iPhone. I no longer use my PC, because it has two broken keys and its Windows 8.1 won’t properly update.

Anyway, I’m going to call the company rep to let him know I’ll go for getting the Braille package as it’s called tomorrow.

If we were having coffee, I’d also share that it’s incredibly hot outside. In the coming week, it’s forecasted to get to 35 degrees Celsius or more. That’s no fun, as we don’t have air conditioning at home or at day activities.

The coming week should be exciting. Tomorrow, the day activities staff are taking some fellow clients and me to a local park and having lunch at a restaurant there.

Next Thursday is my birthday. I love it each year. We are going to eat at an Irish pub with my parents then. My sister and her husband are coming over for a visit on Saturday.

How have you been?

Gratitude List (June 22, 2019) #TToT

Posted on by Astrid

I am feeling okay. Not bad, not good. I am however rather uninspired as to what to write. For this reason, and to hopefully lift up my mood just a little, I’m going to participate in Ten Things of Thankful (#TToT). Here is my gratitude list for the past week. Man, it’s been forever since I did those.

1. Eating rice. My husband bought a rice cooker last week. I love rice, but my husband doesn’t like it when he cooks it the regular way. He does like it when cooked in the rice cooker though. We had rice or risotto several times this past week.

2. Lunch out with my husband. On Tuesday, my husband and I went for a visit at a house we might want to buy. It didn’t work out in the end, but the lunch beforehand was good.

3. My husband preparing my breakfast a few times. My husband is off work this week and next week, which means he’s still in the house when I get up at 7:20AM. Normally he leaves the house at between 5:00 and 6:00AM. He prepared my breakfast a few times this week, making me a cup of coffee. I’m normally too lazy and in a rush to make coffee for myself on week days, so this was extra lovely.

4. Nice weather. It’s been pretty good all week. For next week, the temperature is supposed to rise to 35 degrees Celsius, which isn’t what I like. But I’m thankful to be able to wear summer clothes.

5. Being productive in finding me a living facility. We had a meeting with the care consultant for a facility with my current care agency on Tuesday. The outcome was vague, as this person wasn’t in a position to decide whether I’d be a good fit. However, my support coordinator has been trying to contact several other care agencies.

6. Some nice walks with my support coordinator. On Wednesday and Thursday, when we finished the work we were doing for finding me a living facility, we went for a walk. It was fun.

7. Getting free candy. At the marketplace near my day activities, there is a candy, nuts and dried fruits vendor I regularly buy candy at when we visit the marketplace each Friday. This past Friday, he gave the staff some free candy to give us during coffee breaks.

8. Trying out some new workouts. I’m currently trying squats and such, which are incredibly hard. I also reached my five-day exercise goal, but cheated a little, as walks of 15 minutes or more do count and I didn’t go on the elliptical.

9. Curly fries again, yay! I hadn’t had them in a really long time, but my husband ordered them for me yesterday.

10. Leftovers from a fellow client’s celebrating 25 years working at my day activities. I didn’t attend the celebration itself, as it was on Tuesday afternoon, when we were visiting the house on sale. However, we had lots of leftovers on Wednesday.

Oh my, I’m really obsessing about food as I write this list. Can you tell I love eating? Well yeah, I do. Now going to try to exercise some.

#WeekendCoffeeShare (June 16, 2019)

Posted on by Astrid

I have a ton I want to write about, but I’m not sure I can dedicate a full post to any one of these things. For this reason, I’m joining in with #WeekendCoffeeShare. I should really make this a regular habit, but for whatever reason, I cannot seem to make anything a regular habit where it comes to my blog. Anyway, grab a cup of coffee, while I grab a cup of green tea. Let’s catch up.

If we were having coffee, I’d like to share that this week has been pretty exciting. Not that anything much has happened, but we have a ton of plans layed out for the coming while.

For example, my husband decided he wants to go have a look at a house that’s for sale. It’s in his work city, which would mean a lot of time and money saved on commute. It’s a really old house, but my father said modernizing it should be relatively easy. My husband and I are going to have a formal visit on Tuesday.

My husband did ask whether, if I move there with him, I’ll retain my care. I said yes. The last time I participated in the weekend coffee share linky, I was awaiting news about my long-term care appeal. Well, I won! On June 4, I got approved for long-term care.

This also means I can start looking for a living facility. However, if my husband and I decide to buy the house and move before I’ve found a suitable facility, I will retain my current home support and day activities even though that city isn’t in our local authority. That’s as much as my parents know about long-term care. I haven’t told them I’m probably moving into a care facility.

Speaking of living facilities, I’ll meet with the care consultant for a living facility next Tuesday. This facility is about an hour’s drive from my current home, but it is with my current care agency and seems more suitable than the facility I toured in January. I cannot be sure of that, of course, as I have yet to be fully informed. So on Tuesday morning, I’ll meet with the care consultant and then in the afternoon, I’ll accompany my husband to the house visit.

If we were having coffee, I’d also share that my husband bought a rice cooker. He doesn’t like rice the way he usually cooks it, so was trying whether a rice cooker would help. I liked it. I really love the smell of rice!

I Got Approved for Long-Term Care!

Posted on by Astrid

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

When This Is All Over: A Letter From My Future Self

Posted on by Astrid

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

Thankful Thursday (May 30, 2019): My Mother-In-Law

Posted on by Astrid

It’s Thursday and I haven’t blogged in a few days. I’m feeling the pull of depression worsen and that’s not helped by the fact that I still am not done with the long-term care application process. My husband, in-laws and support staff try to remain positive, but I’m having a really hard time of it. I haven’t updated my list of alters on this blog in a while and several have recently emerged. Some seem like they’ve been around longer, but a recent disappointment in the care application process caused us to split again too. I don’t know whether that’s even possible or it’s a sign of us being a fake dissociator, but oh well.

Thursday means it’s time for Brian’s weekly Thankful Thursday blog hop. I only participated once before and that was when I’d just seemed to lose hope that my situation would ever improve. Because the long-term care laws would be changed in 2021 to allow the mentally ill access, I said that by then everything would fall into place. It looks more like that than ever now. Only thing is, I’m pretty sure I can’t hold on that long. But I digress. This post is supposed to be positive.

Today I am most thankful for my in-laws. When I got the latest disappointing news on Tuesday, my mother-in-law offered to pick me up from day activities. This was unrelated, but it couldn’t have been more coincidental. I spent the evening with her, my father-in-law and my mother-in-law’s niece, who temporarily lives with my in-laws. I spent yesterday evening there too, meaning I had to spend a manageable amount of time alone.

Today is a bank holiday and tomorrow, my day activities is closed too. Since my husband does have to work, I would’ve had to spend the day alone at home if not for my mother-in-law. She offered to come by in the morning for a cup of coffee and in the afternoon too for either tea or to take me to my in-laws’ house if my husband would be home from work late.

I am also thankful for my support coordinator and support worker. Next Monday, my day activities will be a bit short-staffed so I can’t go for the weekly Monday-morning walk, as there’s no-one to guide me. However, my support coordinator offered to come by in the afternoon to take me on a walk. She’s also been incredibly supportive of me during the latest developments. My husband said she deserves half a truck filled with Merci chocolates for all the work she does for me. And I agree. My mother-in-law deserves the other half of the truck.

#WeekendCoffeeShare (May 25, 2019)

Posted on by Astrid

And yet again, I did not write for almost an entire week. Fortunately, this time it isn’t because my depression is worse. It’s still there, mind you, but it’s not worse than it was a week ago. I don’t really know why I couldn’t find the mojo to write again. To get back into the swing of things, I’m joining in with #WeekendCoffeeShare. So grab a cup of coffee and let’s catch up. That is, I’d rather have a glass of ice-cold water right now, but if you’d like a coffee, that’s fine with me too.

This week has been a bit boring but also exciting. This week was when I was supposed to get news regarding my care situation. I still can’t disclose details. That will hopefully change soon, as I did get some news and may know for sure where I’m at this coming Tuesday. For those who don’t know, I’m in the process of applying for long-term care. Please all pray and send positive vibes my way.

On Wednesday, I normally struggle at day activities, because it’s the busiest day and we have a cooking activity then. I tend to want to be in control then and struggle trying not to be bossy. This Wednesday though, I did pretty well. I was even able to help with the cooking itself.

I’ve been fairly active as far as exercise is concerned. I went swimming with my day activities group on Tuesday. I nailed my step goal (10,000 steps) on Wednesday and nearly on Thursday too. I also finally got back into the swing of going on the elliptical regularly. As such, I got over four hours of exercise this past week.

My husbband invited me out for dinner at a chicken restaurant this evening. I love love love chicken and this place didn’t disappoint. It was an hour’s drive from our home, but my husband doesn’t mind driving.

Tomorrow, I’m probably going to have a relaxing day. We might visit my in-laws, as we usually do on Saturday but didn’t today. Other than that, I’m just hoping my day will go by okay.