New Normal

Posted on by Astrid

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

Gratitude List (January 29, 2021) #TToT

Posted on by Astrid

Hi everyone on this rainy Friday. I didn’t write anything yesterday or on Wednesday, because on Wednesday I was feeling uninspired and yesterday I was in bed all day feeling like crap. Today, I want to write again and I’m joining Ten Things of Thankful (#TToT) for a gratitude list.

1. I am grateful for a beautiful sunset on Monday. I’m also grateful for still having the residual sight to actually enjoy it. By the time I got my camera to take a picture, the sun had already set a little more than it had when I first saw it. Therefore, the actual thing was even more beautiful than the picture.

Sunset

2. I am grateful my husband is feeling better. This week-end, I get to go to our house.

3. I am grateful for still no COVID among my family or close relatives. My mother-in-law had to get tested last week, but thankfully, she was negative.

4. I am grateful I’m feeling slightly better today than I was yesterday. I have been horribly constipated for about a week now and yesterday evening, was nauseated from it. That has thankfully gone.

I am hoping to get a new medication for the constipation later today. I currently take Macrogol, which gives me horrible gas and cramping. The staff called my GP this morning and she’s going to send in some different kind of medication. I forgot to ask what she’s prescribed exactly, but I’ll find out.

5. I am grateful for rest. I was able to sleep pretty well last night despite having been in bed all afternoon yesterday and having gone back to sleep at 8PM. Thankfully, I feel rested now.

6. I am grateful for my sensory cat soft toy. It can be heated in the microwave and then gives off heat and a lavender scent. I had it in bed with me last night.

7. I am grateful for my new AFO or foot brace or whatever it’s called. The original one came on Monday, but it was painful to wear in a way that the physical therapist thought wouldn’t go away with practice. Thankfully, I now have another one. It’s still painful to walk on uneven ground wearing it, but that’s supposed to go away when I get used to the thing.

8. I am grateful for delicious Turkish pizza. A staff brought me some today and I ate it with salad and mayonaise. It was awesome!

9. I am grateful for some DIY inspiration. Today, the staff (same one who brought the pizza) helped me create some air-dry clay figures which I will later hang onto something for decorating my room.

10. I am grateful for books and Netflix shows. I was able to read again on Wednesday and really enjoyed it. I also got a Netflix subscription again last week. Though I’m not sure for how long I’ll keep it, I did enjoy watching some shows.

What are you grateful for?

Five Favorite Cold Remedies #5Things

Posted on by Astrid

Today’s prompt for #5Things is favorite cold remedies. Now I must say I personally don’t believe in preventing or treating a cold with home remedies. There might be measures you can take to prevent infection, but I’m not even sure. Once you’ve got a cold though, whatever you do, you’ll just have to ride it out.

That being said, I do believe in things that can relieve the discomfort from your cold symptoms. I’m not sure these should be called “remedies”. Here they are though.

1. Green tea. Green tea is almost good for everything. I mean, people here at the facility even get it for constipation. I am not sure there are actually antiviral substances in green tea, but a hot cup definitely helps me feel better when I’m having a cold.

2. Chicken broth or soup. I remember my husband at one point telling me that he’d read that chicken soup treats colds because of its antibacterial properties. My husband’s point being, of course, that the common cold is a virus. That being said, similar to green tea, chicken soup or broth definitely helps me feel better when I’m feeling under the weather.

3. Black licorice. I know, I know, black licorice is a pretty risky type of candy, with even small amounts raising your blood pressure significantly. That being said, sucking on some licorice definitely helps me when I’m having a sore throat or cough. Plus, it’s far less yucky than other throat-comforting candies or remedies.

4. Essential oils. I don’t really believe in treating actual diseases with essential oils, but I do believe in relieving discomfort with them. There are a number of so-called immune boosting and seasonal discomfort blends out there. For a cold, I personally prefer blends with peppermint, eucalyptus and/or lemon essential oil in them.

5. Fresh orange juice. I don’t normally care for orange juice, but it does feel comforting when I have a cold. Besides, if its vitamin C won’t boost my immune system, at least it won’t harm it either.

What’s your favorite cold remedy?

Flash Fiction: ER

Posted on by Astrid

I look(1) at the patient and notice(1) she’s cyanosing(2). I check her pulse, which is very faint(5). I tell my colleague in a whispering)3) voice: “Please get the doc. I don’t know what happened, but she has to come through.” I lovingly(4) stroke her arm. Despite being a nurse, I can’t act. I can’t imagine my own daughter is in such a feeble(5) condition.

This piece of flash fiction was written for MindloveMisery’s Menagerie’s Saturday Mix for this week, which was Same Same But Different. The challenge is to write about the five words provided, but not use them. The words were: see, blue, soft, kind and weak.

I saw that many participants used synonyms for “blue” such as “sad” and “moody”. For me though, immediately, words that convey the color blue came to mind.

Obviously, this piece is entirely the product of my own imagination. I have absolutely no idea whether there’s any realism about this tale, but I loved trying to come up with it.

#WeekendCoffeeShare (January 23, 2021)

Posted on by Astrid

Happy Saturday all! I’m so thrilled you’re joining me for another edition of #WeekendCoffeeShare. I haven’t had that much coffee yet, as my afternoon coffee was too strong for my liking, so I took only a few sips. I’m hoping my evening coffee is better.

If we were having coffee, I would proudly announce that, despite my less than ideal step count for the week, I’m still ahead of my sister. Last Tuesday was a real low, as it rained all day and I didn’t feel very well, so didn’t go on the elliptical. As a result, I got in only about 2000 steps.

If we were having coffee, I’d share that the AFO (ankle foot orthosis) guy was here on Monday. He took a look at my drop foot and at my shoes. He’ll return soon with some AFOs to try.

I am certainly hoping the AFO will help. Yesterday, after I walked for about half an hour, my foot began to horribly drag and this caused me some discomfort. I can’t exactly say it hurt, but it did feel really off. I was angry with my body afterwards. My staff tried to put things into perspective by saying I shouldn’t ignore the fact that I have a physical disability. Thing is, I’m not 100% sure I do.

If we were having coffee, I’d share that the weather has been okay for the rest of the week. We had some rain, a lot of clouds, but at times a little sunshine too. It hasn’t been cold, with temps rising to about 10°C on Wednesday I think. Today is a bit more wintery though.

If we were having coffee, I’d tell you that I’m having a quiet week-end at the care facility. My husband was feeling a little poorly earlier in the week, so just to be on the safe side we decided not to meet.

I was originally planning on having pizza this evening, but decided against it eventually. I wanted to get it because one of the new pizzas at Domino’s is called Extreme Spicy Roulette and I wanted to try it before it went out of sale again. However, then I found out that the roulette bit is real, in that one slice is even spicier than the rest. I am not one for surprises, so no pizza for me today.

To make up for it though, kind of, this morning a staff took me for a walk in a nearby forest and McDonald’s afterwards. I must say the chicken nuggets were great!

If we were having coffee, I would share that my soaping supplies arrived yesterday. I haven’t used them yet though.

If we were having coffee, lastly I would share about IMMERSION Bible Studies, a series of Bible study books I discovered on Bookshare today. I immediately downloaded the one on Genesis, as I really need to apply the Bible, and particularly the Old Testament, more. I mean, I’m still reading Genesis as if it’s a collection of legends, not something that makes sense to my life. This book certainly helps me.

What’s been going on in your life?

I Can Rest in Jesus

Posted on by Astrid

A few weeks ago, like I’ve mentioned before, my husband pointed out that I cannot and should not do life alone. I at once cannot and do not need to rely on myself alone to solve the puzzle that is life here on Earth. I have God to help me.

That same day, John 15:5 was the verse of the day on the Bible app I use. It has been on my mind ever since and could easily be one of my favorite verses so far. Oh yes, I know the Bible wasn’t originally written in chapters or verses and the wider context is important too. I will get to that.

“I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing.” (John 15:5 ESV)

This is good news! My husband was initially worried that I would be disappointed by the rest of this chapter, because, well, it is good news only to those who will listen. This verse, to me, however, captures both the positive and the negative message that the wider context of the chapter reveals: Jesus is the vine, while we are the branches. If we abide in him, we will prosper; if we don’t, we will perish.

Today, as I was thinking of what to write for my blog, I opened Bobby Schuller’s book You Are Beloved and saw him discuss this exact chapter. Schuller says that, in Greek, the word that is translated as “abide” in English, is “meno”. There is no literal translation for this word in either Dutch or English (the Dutch Bible translation I use says “remain in”). Meno, according to Schuller, means something like coming home to a warm place after having been in the cold for a long while. We can come home to Jesus.

I loved the imagery Schuller evoked. As regular readers of this blog might know, I have never felt that I was truly “home” anywhere. No, not even in my current care facility. I didn’t feel very safe with my parents and, after I moved out, have been in so many places that were all temporary. Now that I can stay here, still, I struggle to believe it. Regardless though, in Jesus, I can rest and be home.

Schuller also makes it very clear that we can only truly love one another if we know God’s love for us. Through Jesus, we are loved in all our sinfulness. If we realize that God loves us, imperfections and all, we are able to extend this love to other people.

In my experience, this isn’t even a fully conscious choice. God’s grace extends to us, and due to that we are able to extend our grace and love to others. I am reminded, as I often am lately, of my music teacher’s telling me and my fellow students about a show on Dutch TV at the time called “God changes people”. Because the first several syllables of this phrase are the same as those in a Dutch swear word involving God, I was tempted to start cussing with God and then change my wording mid-sentence to “God changes people!” I still use God’s name in vain at times, but each time now, I am reminded of this. I credit God’s work in me for that.

I am linking up with Faith on Fire and Grace and Truth.

When I Was Fifteen

Posted on by Astrid

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It

Flash Fiction: Depression

Posted on by Astrid

I wake up. Another day. Another depressing set of moments in my life. My back hurts. My shoulders are pushed down by the weight of my mood. Today, like sometimes, the great bones of my life feel so heavy. I’m not sure I can take this much longer. So I pray… God, have mercy on my soul. Relieve me from this burden that is the intense sadness of living in the world of 2021. Let me live again, rather than just exist. In Jesus’ name, Amen. I feel better already. Maybe life isn’t so dark after all.

This piece of flash fiction was written for yesterday’s Prosery. The idea of Prosery is to write a piece of flash fiction in 144 words or less (not including the title). It must have a beginning and an end and not be poetry. In addition, you are required to include the line of poetry provided. This week’s line is:

“Sometimes the great bones of my life feel so heavy,”

As you can see, I altered the punctuation, but I did include the entire line.

This piece is partly autobiographical, but still, it is fiction.

Gratitude List (January 17, 2021)

Posted on by Astrid

It’s nearly 2AM and I can’t sleep. I woke up about two hours ago after only an hour or two of sleep. I’m kind of worried. To calm my mind, I decided to do a gratitude list. I can’t find the Ten Things of Thankful link-up, but that doesn’t keep me from being grateful.

1. I am grateful for my one-on-one support. I’ve been a bit stressed lately and thankfully, they help me manage it.

2. I am grateful for a financial positive. I won’t believe it till the money is actually in my bank account, but if I’m correct, I won’t have to pay a higher long-term care copay this year. This means my net paycheck will be higher than it was last year.

3. I am grateful that I felt comfortable ordering some new soaping supplies. I ordered almond oil, coconut oil, cocoa butter, shea butter, beeswax, Dead Sea salt and some water-soluble colorants for my soap and other bath and body products. I am hoping, once they arrive, to be able to make bath melts with the oils, butters and beeswax and bath salt with the Dead Sea salt.

4. I am grateful for heart-shaped candies. Last Monday, my staff had a team meeting and one of them brought these, then put the leftover candies in a box with my name on it. The other clients, after all, can’t eat hard candy.

5. I am grateful for cookies. Like I said yesterday, my one-on-one helped me bake those. They were really good.

6. I am grateful for Mexican bean wraps. My day activities staff and I made those for lunch on Wednesday and they were good.

7. I am grateful my bath bomb turned out pretty good. I will have to check whether I placed the image correctly in my last post, but oh well. I didn’t end up taking a bath last evening, but I might today or sometime next week.

8. I am grateful for a lot of Christian self-help books. I’m still struggling with my faith, but they definitely help me realize that I can’t and don’t need to be alone.

9. I am grateful for a nice phone conversation with my father. I was a little stressed about it at first, as I hadn’t spoken to him in a few months. However, it went really well.

10. I am grateful that I have the right to vote. I am not yet sure whom I’ll vote for, but I’m so glad I live in a democracy.

What are you grateful for?

#WeekendCoffeeShare (January 16, 2021)

Posted on by Astrid

Hi all on this grey Saturday. Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee about half an hour ago. If you want a Senseo though, I can make one for you. Let’s have coffee and let’s catch up.

If we were having coffee, first I’d ask you how your weather is. Ours is pretty cold, but the newspaper said it isn’t even really freezing. I guess I don’t really like winter if I consider this cold. Snow is forecasted for tonight, but I doubt it’ll even create a dusting of white. That’s fine by me as I don’t like snow.

If we were having coffee, I’d share that I guess I shouldn’t have said on Thursday that I am glad to live in a stable democracy. After all, the Dutch government collapsed on Friday. It’s totally justified though and no, it’s not about COVID. It’s about parents pretty much randomly being labeled as fraudulent childcare payment recipients and made to repay sometimes tens of thousands of euros that they didn’t have.

If we were having coffee, I would share that my father had his birthday yesterday. He considered the government collapse to be a welcome present, as he doesn’t support the rather conservative parties making up the government.

I phoned my father yesterday and he told me he’d also gotten some type of signal converter, so that he can read the status of his heating on his computer. I sent him a Kate Rusby CD, but it isn’t due to arrive until like the 25th.

If we were having coffee, I would share that I have been quite creative lately. I made a bath bomb on Thursday. I might take it with me into the bathtub later this evening.

My one-on-one staff also helped me bake cookies yesterday. Well, she did most of the prep, as the dough was too sticky for me to handle. That was a bit frustrating. The cookies were delicious though.

If we were having coffee, I would tell you that I had a long phone call with my husband yesterday. I am not going to go to our house this week-end, but I loved to hear his voice instead.

If we were having coffee, lastly I’d tell you that I’m hoping to get an AFO (ankle foot orthosis) for my left foot soon. The physical therapist already E-mailed the orthopedic equipment maker, but we haven’t heard back from him. Walking is still doable without the AFO, but when I go for long’ish (like twenty minute) walks, my foot drags. This is a little painful. It also causes my shoe to get damaged quite easily. In fact, even though the orthopedic shoemaker had already put some type of buffer thing on it, the shoe was almost beyond repair after three weeks. Anyway, I’m hoping the AFO gets here soon and will be helpful.

If not, my father mentioned that, back when I was little, the doctors had mentioned surgery to lengthen my calf muscle. That probably comes with its own risks though. Besides, as long as the pain and discomfort are manageable, I don’t think any doctor would want to operate on me just to save me buying a new pair of shoes every month.

What’s been going on in your life lately?