A Mixed Monday

Posted on by Astrid

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

Starting My Weight Loss Journey Again (And This Time for Real)

Posted on by Astrid

In the first week of my being in the care facility, I got weighed in. I hadn’t been weighed since sometime in like February. Not surprisingly, I had gained about 2-3kg in these nine months. I didn’t immediately take action though, as I felt I’d had to get used to being in the facility first and see how my weight would progress. Two weeks ago, I got weighed in and had gained about 500 grams again. This isn’t huge and could be due to the time of day I was being weighed in, but I decided it was time for action anyway. I’ve been in the facility for two months now and need to make sure I don’t gain any weight and ultimately lose some.

As regular readers of this blog know, I’m short-statured at only 1.53m. The upper border of healthy weight, as such, is 58.5kg. The border between overweight and obesity is 70.2kg. I weighed 74.9kg two weeks ago. This means I’ll have to lose at least 5kg. I have no intention of getting to a healthy weight, but I really want to cross the border back from obese to overweight. I also know I can do this, as I did this about 18 months ago too. Now though, once I reach overweight status, I have no intention of crossing the border back to obese.

I discussed my eating habits with my husband. He said that, if I skip just the cookie at morning coffee break and don’t change anything else, I’ll have lost those 5kg in a year or two. I want to go faster though. For this reason, I’ve also changed from chocolate spread to peanut butter on my breakfast bread. I know, peanut butter still isn’t low-calorie, but it’s a lot healthier than chocolate spread. At lunchtime, I still got two slices of bread which were heavily topped with butter and sweet toppings, one with peanut butter and the other usually with chocolate spread or chocolate flakes. There’s a mealtime assistant who prepares our lunch and I didn’t want to have a huge list of demands of her, given that I already have quite a few likes and dislikes on my list. Like, I can’t stand ham or cheese (unless toasted). I basically only eat what are called sweet toppings and don’t even like all of those. As such, I initially didn’t want to say that I don’t want butter and don’t want my bread too heavily topped. After discussing it with the staff, we agreed to put this on my list of lunchtime menu requests anyway.

My husband advised me for the millionth time to drink more water. At first, I was like, how do I remember to drink enough water? He told me to put reminders in my iPhone. At first, I thought that would be weird or annoying and indeed it’s a hassle to put reminders in my phone via the default reminders app. I however remembered a friend recommending an app that reminds you to drink water and where you can log your water intake. I searched for it. The first one I found cost like €8,99/week and hardly had any free features. I mean seriously?! Who would pay almost €40 a month for an app to remind you to drink water? I doubted my friend meant this app. Turned out there’s another app by a similar name that’s free and €9,99 once for paid features. I got that one and love it! I had some trouble setting it up at first, but now it reminds me each hour between 9AM and 9PM to drink water. Its sound is really catchy. I reached my recommended water intake goal for the past three or four days and almost reached it for the entire week that I’ve been using the app.

I finally made my Fitbit activity tracker work again this past week too. It had been lying around ever since I came here because its battery was empty and I couldn’t find the charger. Then when I finally found it, the app had somehow locked me out. I got in again after an app update. I notice that, though overall I manage fewer daily steps than before I moved here, my active hours are better. This means I get over 250 steps most hours during the day. Today, I didn’t do that well in this department, but I did manage nearly 8000 steps throughout the day.

I was pretty conscious of my eating habits all through the week, making sure I eat my veggies if there’s even the slightest chance I may be able to like them. Before this, I’d not even try a lot of them. I made sure to eat enough fruit. Not that I had much trouble with that before, but fruit usually meant bananas. These are relatively high in calories and very sugary. Thankfully, we had grapes, kiwifruit and clementines too, as well as of course apples and sometimes pears.

Over the week-end, I stayed at the facility. When discussing my weight loss plans with my husband, I mentioned that we get chips on week-ends. However, this week-end, we also got pancakes for lunch and a lot of other treats. I didn’t really like the result this would have on my weight, but also found it hard to resist them.

My staff wasn’t particularly motivating either. Some literally told me to wait for January to start my healthier lifestyle routine, as I’d not make it in December anyway. I mean, yes, we celebrate St. Nicholas with a fries and snacks stand on Thursday and get a lot of extra treats this holiday season. Does that mean I don’t need to eat in moderation? Someone asked an overeaters’ support group a few weeks back and was encouraged to follow through now in spite of the holidays. Now I don’t really like the abstinence-focused mindset of Overeaters Anonymous and the like, but I have always felt that you can always start on a healthier lifestyle journey right now.

Yesterday, I decided to get weighed in. I wanted to know how bad the result really was and how much I’d have to lose once I’d start my journey for real. Well, guess what? I weighed 73.8kg. This truly motivates me.

On Thursday, I fully intend to not stuff myself full of fries and snacks even though I can. Tomorrow, my support coordinator has an evening shift and I’ll be asking her to ask her colleagues for help on my weight loss journey. I realized this past week-end that some make me really uncomfortable with how often they offer me food. I mean, my husband was annoyed at my former support worker for allowing me (not encouraging me!) to buy binge food when she took me to the store on Thursdays. I didn’t realize and probably didn’t want to admit that, in some respects, my current staff are worse. I mean, I haven’t had a binge since buying liquorice with my mother-in-law three weeks ago and the staff definitely discouraged that, but weight gain isn’t about an occasional binge. It’s about what you eat everyday.

#WeekendCoffeeShare (November 10, 2019)

Posted on by Astrid

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

Posted on by Astrid

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?

A Night-Time Crisis

Posted on by Astrid

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.

Attachment Issues and Other Ramblings

Posted on by Astrid

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)

Posted on by Astrid

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.

Moving to the Care Facility Soon!

Posted on by Astrid

As regular readers of this blog know, I’ve been planning on moving into long-term care for nearly a year. That is, that’s how long it’s taken me to decide I for sure want to apply for long-term care funding, to apply for it, to appeal the decision denying me the funding, to win the appeal and then to find a place. Honestly, this whole journey has been going on much longer. Twelve years ago this month, I told my support coordinator in Nijmegen that I wanted to get into one of their living facilities for people with mobility impairments. Due to my psychiatric hospitalization, this idea got trashed and we ended up looking for places for people with mental illness or “high-functioning” autism. That took many years and was unsuccessful in the end. I got kicked out of the mental hospital in May of 2017 for supposedly wanting to remain institutionalized forever. Well, the psychologist was right in that I feel I need 24-hour care for the rest of my life, but I most definitely didn’t intend on staying in the psychiatric hospital forever. I’d much rather go into a facility for people with developmental disabilities. Thankfully all this time of battling the system that says that an IQ above 85 means you should be pushed towards independence forever, ultimately paid off. I will be moving to the care facility in Raalte on September 23.

The house I will be placed in, has room for twelve residents, divided between two groups of six. There’s always at least two staff in the house during the time the residents are home and awake. During the time we’re supposed to be at the day center, there’s an on-call staff for the entire living facility, but of course there’s staff at the day center. During the night, there’s a sleeping staff at my house, but there’s also a staff who is awake and serves the entire facility.

I will get a room with its own bathroom. This room is a bit further down the hall than the other currently available room, but that room has a shared bathroom. At first, I said I didn’t mind, but the staff warned me that the other clients don’t clean up after themselves. I will get a call button to alert a staff member, so if I can’t get out of the rooom for whatever reason, I can still call the staff if they don’t hear me shouting.

On Thursday, the staff will be discussing what day center group I’ll be placed in. The day center manager did say, after I asked it, that my elliptical can be placed there. They have day activities Monday through Thursday and on alternating Fridays.

They will make sure they have an extra staf available on the 23rd when I move in. They asked my day center’s coordinator whether either she or my support coordinator can come the next day for proper handover.

After a month, we will have a review of how things are going. They made it clear that this is not for the staff to decide I need to be moved out again, but for us to discuss ways the staff could possibly better accommodate me.

I am very excited to go to Raalte! My husband may ask for time off work to move me, especially since this week is also the week we’ll meet with the solicitor for property handover on the house we’re buying. It all is a bit stressful still, but I”m so glad I’ll finally find a place that’s not for independence training or treatment or the like. Finally, I’ll be able to stop merely surviving and start living.

Candy Cake

Posted on by Astrid

I want to write more often about the ordinary things I experience in daily life, particularly those I’m grateful for. I considered doing a daily gratitude post or the like, but I guess that would get boring. Today though, I have some really joyous experiences I want to write about.

I may or may not have shared that, when my husband and I got married in 2011, we got a homemade liquorice cake from the staff and patients at the psychiatric unit I resided at. The bottom was made out of a Dutch candy called foam blocks. These are really made entirely of pressed-together powdered sugar and they’re yuck. The top, however, was layered with my favorite sweet liquorice. I loved it!

When my support coordinator and I were in the process of appealing the authority’s decision to deny me long-term care funding, we agreed to make another liquorice cake if we succeeded. And we did! Today, we made the cake.

Candy Cake

As you can probably see, we didn’t choose foam blocks for the bottom layer. Instead, my support coordinator bought waffles, which are not only more tasty but also softer. This meant that my fellow clients at day activities who have swallowing difficulties, could at least eat some of the cake. After all, they can’t eat liquorice.

We then made a layer of marshmallow diamonds. Then we layered the top with an assortment of winegums, sugared candy and liquorice. Finally, my support coordinator sprinkled sugared pop rice over it. In the middle, we stuck a candle in the shape of the number four into one of the marshmallows. This symbolizes the fact that I got my funding approved on June 4.

My support coordinator took the picture above, so that I can show it to my husband and on this blog. Seeing AI, my image recognition software, did recognize the picture as being of a cake.

We ate some of the cake at our mid-afternoon coffee break at day activities. Though the other clients don’t understand the reason I made this cake, they definitely enjoyed it. And so did I!

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.