Monthly Archives: March 2016

Being Powerful, Empowered, Mighty: Making My Needs Known

Today, I actually feel like writing about an experience I had this week, when I created my list of support needs and concerns for when I’m going to live with my husband. I particuarly wanted to write about my various ideas on day activities. Then again, I wanted my post to be prompt-based and have some direction and preferably be suited for a linky. Then I saw that this week’s prompt from mumturnedmom is “mighty”. Well, it was quite an empowering experience and a mighty experience at that. I don’t know whether “mighty” means the exact same as “powerful” or “empowered” and I believe these don’t even mean the same, but who cares? I am empowered, I am powerful, I am mighty, for I can make decisions on my care needs.

Seriously though, this is really empowering. After all, up until last week, I thought all responsibility for making this whole living with my husband thing work lay with me, but all control lay with my treatment team. Late last week, I was ranting about this in a Facebook group for people with borderline personality disorder and someone else said just the right things to get my butt moving. Or rather my fingers. She didn’t say much and I can hardly remember what she actually said, but I was inspired to finally start wrting down my support needs and concerns. My psychologist had been pushing me to do this, but I didn’t know how.

The first thing was about medication: who makes sure I get my meds on time, checks when I’ve run out and gets me a new supply from the pharmacy? Can I get a periodic med review with a psychiatrist? Then came concerns about my handling distress: whom to call and when f I’m in distress? What can I do myself? What needs to be done if I end up in a dangerous situation? Then came concerns about activities of daily living like making coffee (which I can do myself), preparing and serving myself food and suchlike. I didn’t have answers to many of these questions in all of these areas, except that i need to get supported day activities.

I E-mailed my list of concerns to my named nurse and was discussing day activities and recreation with her. My husband had made a few suggestions last week, but I was brainstorming with my named nurse too. I reasoned that I’d like to get my day activities from a developmental disability service provider rather than one for mental health, because they are usually more equipped to accommodate multiple disabilities and sensory needs.

Suddenly something popped up into my mind that I’d said to a nurse at my old institution a few years ago: that I’d like to try snoezelen. Snoezelen is a Dutch term with no proper English translation, but it means that a person with a developmental disability is allowed into a room which is equipped with materials to soothe and stimulate the senses. The sensory environment is completely controlable. It is also safe, like with soft walls and such, because most people who use this type of service have behavioral challenges.

I expected my nurse to ridicule me for proposing this, but she completely got me. My activiyt staff, whom I told the next day, said the institution has a snoezel room at the unit for people with intellectual disabilities and I may get approval to try it there. Of course, since this service is usually provided to people with intellectual disabilities, I may not be approved and if I do get approved, I may not be able to get along with the other clients. Well, screw that last one, which was holding my staff at the old institution back: I can hardly get along with most of my current fellow patients either.

Now I wrote my psychologist, but didn’t talk about the snoezelen idea, because I fear she will most definitely ridicule me. She seems so focused on my intelligence and my mental illness rather than my autism and sensory needs, after all. I did ask my named nurse to go with me to my next meeting with my psychologist so that she might advocate for me.

I also discussed my need for day acitivities in various Facebook groups for autism and other disabilities. Other ideas provided were yoga, swimming, trampolining (on a low trampoline) and gardening. My activity staff also said I need multiple activities that I can do during the week. If I end up swimming or doing yoga, I would like to do it at a day activity center, because then the instructors would be more accommodating than when I’d go to a regular gym or pool.

I feel much more positive, much more empowered than I did last week, even though many people or agencies may still get in the way. Like, my psychologist or social worker may refuse to refer me to a developmental disability service. Then again, my social worker said I need to do the meeting with the governnment people who decide on funding myself. These people might refuse to contract a developmental disability agency for me, or the agencies I have in mind might all turn me down. Still, if I don’s stand up for what I believe I need, I won’t definitely get things done my way.

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#AtoZChallenge: Mental Health (With a Twist)

Can you believe March is already two-thirds over with? Woha. I haven’t posted much this month. Next month, I’ll make up for it, because I’ll be participating in the #AtoZChallenge again. The idea is that, each day of the month of April except for Sundays, you write a post where the topics of each post follow the letters of the alphabet. Last year I did it on autism and chose to write on one topic pertaining to autism each day. Then last October I participated in #Write31Days with the theme of mental health.

After two quite exhausting blog challenges last year, It was a tough decision whether to sign up for the #AtoZChallenge again. Though #Write31Days was much tougher, I still wasn’t sure how to tackle this #AtoZChallenge either. Particulalry, I wasn’t sure what theme would catch enough people’s attention and how I could use it to entertain people while educating them. I want for this year to write posts that people actually like to read. I’d even like to use some humor.

Now I don’t do well with humor, but that doesn’t mean this year’s posts should be as dry and academic as last year’s were. My kind of humor is acrually well-appreciated in some spheres, especially the madosphere. The word “madosphere” was coined by some mental health bloggers to mean the mental health blogosphere. However, my humor is not just appreciated by mental heath bloggers, but by “mentals” in general.

So this year I’m taking my theme from #Write31Days and write about mental health again, but with a twist. Since it’s #AtoZChallenge, I’m going to write the alphabet of mental health. I will write brief snippets about a number of topics that come to mind when I think of mental health, so there won’t just be one topic for each post. For some letters, it was easy to think up five or more words, but for others (partiuclarly the E, J and Y) I’m still searching for words. If anyone has any suggestions of words they think of, starting with these letters of any others, they’re welcome to inspire me.

I was inspired to do this A-Z of mental health by a mental health nursing student blogger I used to read way back in like 2009. Her blog has long disappeared into the archives of the Internet and I am clueless as to how her idea popped into my mind this year. She did an A-Z of secure mental health services. I will get to these too, but I’ll write about mental health and psychiatric care in general. Most of it will be focused on inpatient psychiatric care and severe mental illness, since that’s what I know the most about. However, again, if there are any topics you’d like me to discuss, feel free to let me know.

Withdraw in Prayer

“But whoever listens to me will live in safety and be at ease, without fear of harm.” (Proverbs 1:33 NIV)

I found the above verse in yesterday’s devotion for dieters. Since the verse was taken out of context, I decided to read the entire chapter. Proverbs is in the Old Testament, which to me, who knows very little about the Bible, mostly means it’s based in fear. Before Jesus, people were taught to fear the Lord, and those who did so were seen as wise. That’s also what this chapter seems to say.

However, this particular verse is quite positive. The author of the devotional uses it to make the point that, when we are troubled, we can and should turn to the Lord in prayer.

As I wrote in an old reflection, Jesus himself suffered human temptation. There were, like the author of the devotion for dieters says, also many times when he was persecuted. He didn’t answer in destructive ways, either by attacking the people who persecuted him or by giving in to temptation. Rather, he withdrew and prayed.

The people of the Old Testament may have had a hard time turning to God, because God hadn’t forgiven humanity yet. At least, if I lived in the time of Proverbs 1, I’d not be led to turn to God for guidance that easily, despite what is written in the last verse. However, through Jesus, we can be assured that a loving God will guide us and help us overcome the pressures of life and our human temptation. Jesus knows what it’s like to be under pressure and he also knows what it is like to resist temptation – successfully. By turning to our Lord and Heavenly Father when under stress, he set an example.

Willpower, as I said last month, is the will to turn over the reigns of our life to God. We don’t have to do this thing called life alone.

I have been doing okay’ish in the eating disorder and self-harm departments lately, despite having been under a lot of pressure. In part, this is because I’ve been withdrawing from the pressures of daily life more. That still doesn’t mean I’ve turned myself over to God. I withdraw into ordinary things, like books, writing, pampering myself with body care products, etc. I don’t say this is wrong, but it isn’t doing anything but temporarily distracting me from the pressures of life.

God can help us truly overcome our suffering. He teaches us to pray and, as is written in Proverbs 1:33, listen. If we listen for God’s guidance, we may realize that He will take care of us. I’m not there yet. I’m working on it, praying about it though.

Grace Cole Fruit Works Peach and Pear Products

Review: Grace Cole Fruit Works Peach and Pear Shower Gel, Body Scrub and Body Butter

As most of you know, I know very little about the traditional blog topics, like fashion and beauty. Nonetheless, I have been perseverating on body care products lately. I have an insane collection of shower gels and have started to collect various other products. I like to write about them on my Dutch blog. Thankfully, the activity staff help me take pictures, because I know that product reviews don’t do well without a picture.

Today, I have my first beauty product review for this blog. I review three products fro the Grace Cole Fruit Works collection: the peach and pear shower gel, body scrub and body butter. I bought them at a Dutch store. I originally intended on buying the pineapple and passion fruit products, but one of them was sold out. I didn’t want to pay the shipping cost to get the products directly out of the UK.

Grace Cole Fruit Works Peach and Pear Products

First, my general impression. I hadn’t expected the body scrub to come in a tube. As a result of this, the shower gel and body scrub packaging feels exactly alike. I labeled the tubes and the body butter pot, but Braille labeling tape is not great for sticking when it gets wet. As a result, the body scrub label came off when I first used it. I put on a new sticker and – knock on wood – it’s still on.

When I opened each product to smell it, a very strong, fruity scent flew into my nostrils. It was great, but maybe a little too strong. The scent is the same for each of these three products. Both the peach and pear scents are recognizable, although upon first opening the products, I mostly smelled pear.

Grace Cole Peach and Pear Shower Gel

The shower gel is pretty thin. That’s a drawback, because too much easily comes out of the tube. Since my natural instinct is to hold the tube in its standing poisiton, which is with the lid facing down, I easily made a mess. However, once I got used to how thin this shower gel is, I no longer made as much of a mess. I apply the shower gel with a sponge. A washcloth might work better because of how much the sponge absorbs, but I like the feel of a sponge better.

Grace Cole Peach and Pear Body Scrub

The body scrub is a tiny bit thicker than the shower gel. At first, I didn’t like it that it’s in a tube, but now I prefer a tube to a pot, because it’s easier to spread the product over a sponge without getting a huge amount on one end and nothing on the other. I have only ever usedtwo other body scrubs, so I can hardly compare the feel of the exfoliating grains. They feel relatively large though. My skin feels a lot softer after applying this body scrub.

Grace Cole Peach and Pear Body Butter

The body butter, like the shower gel, is pretty thin. It’s more like a thick cream than a butter if you ask me, and I prefer body butters to body creams. At first, it also took ages for the body butter to be absorbed by my skin. That was probably because, thinking it would be thicker, I’d applied too much. The second time I used the body butter, it was absorbed pretty quickly. This body butter does leave a bit of a greasy layer on your skin, but it’s not too bad.

When applying each of these three products, the scent is less strong than it seems when smelling the products out of the tubes or pot. I like that. It’s still strong enough to last for a while but not overwhelming.

To conclude, I am not over the moon about these products, as I thought I’d be, but they are still pretty good. The Dutch store where I bought them carries many of Grace Cole’s bath and body products. I am still curious to get more of them. When looking at the official Grace Cole site in the UK, I discovered they also sell lip care products. Unfortunately, I’ve not been able to find them in the Netherlands, so I guess I’m at some point going to pay the shipping cost to get them.

Book Review: Rules for 50/50 Chances by Kate McGovern

Last January, when I’d just finished a few other books, I decided to look around for another young adult novel to read that’s about a subject I’m interested in. I stumbled upon Rules for 50/50 Chances by Kate McGovern. The book sounded interesting enough, so I bought it and started reading. Due to some other interests demanding their time from me, I didn’t finish it till yesterday. This review may contain spoilers.

Synopsis

Seventeen-year-old Rose Levenson has a decision to make: Does she want to know how she’s going to die? Because when Rose turns eighteen, she can take the test that tells her if she carries the genetic mutation for Huntington’s disease, the degenerative condition that is slowly killing her mother. With a fifty-fifty shot at inheriting her family’s genetic curse, Rose is skeptical about pursuing anything that presumes she’ll live to be a healthy adult-including her dream career in ballet and the possibility of falling in love. But when she meets a boy from a similarly flawed genetic pool and gets an audition for a dance scholarship across the country, Rose begins to question her carefully laid rules.

Review

Pretty early in the book, I found out who the boy from the similarly flawed genetic pool mentioned in the synopsis is. His mother and sisters have sickle cell disease, but he doesn’t carry “the gene”. There’s where McGovern puts a glaringly obvious medical inaccuracy in the book, that is, that sickle cell is a dominantly inherited disease. There is no mention of the boy’s father being a carrier of the disease and sickle cell is compared to recessive diseases at least once. For those who don’t know, sickle cell is a recessive disease, meaning you need two copies of the gene to get the disease. I happen to know because I once read that people who carry one copy of the gene don’t get sickle cell disease and have the added luck of not getting sick when infected with malaria. That’s why sickle cell is more common among Black people than among Whites or other races. Yes, I did look it up to be sure. This huge medical inaccuracy spoils the entire book for me. That’s probably me though, being autistic and having a special interest in medicne.

Now that we got this out of the way, I have to say the book is otherwise quite good. It is a little predictable at times, but there are still enough twists and turns for the book to remain interesting. The author goes into detail sometimes, which I like – but which is also why said medical inaccuracy annoys me. I love getting to know the main character really well. Rose is not just a girl whose mother has Huntington’s. She’s a true round character. I also got a glimpse into the world of Huntington’s (obviously), sickle cell, ballet, and as a added bonus, the California zephyr train ride. Love trains.

Book Details

Title: Rules for 50/50 Chances
Author: Kate McGovern
Publisher: Farrar, Straus and Giroux (BYR)
Publication Date: November 2015

Out of My Head, Out of My Reach

I have been feeling a lack of motivation for blogging lately, especially in English. I blame, in part, the restart (again) of my Dutch blog, but I also blame the fact that just too much is going on in my mind that I don’t know how to put into words on paper (or on the computer screen, of course). Today, I got myself yet a couple more journaling guides, and one of them is 53 Weekly Writing Retreats by Mari L. McCarthy. I subscribe to her newsletter and have been thinking of joining one of her journaling courses, but I never followed through.

The first journaling exercise in this 53 weekly retreats thingy is called “Goin’ Outta My Head”. It asks you to write what’s on your mind. This may not exactly turn into a blog post that’s going to go viral (not that any of my blog posts will ever go viral, ha), but I don’t care. Here goes.

I’m having huge difficulty imagining I’ll ever be ready for life with my husband. My husband wants me to practise coming to our home on a MOnday or Friday (so after or before the week-end we’ll spend together) to practise time alone where I can’t reach out for support. He wants me to use my limited accessible long-distance transportation for this. The tiny village is not in the same short-distance transportation area as the institution, so I can’t use the virtually unlimited regional accessible transportation service. Not that I have a regional accessible transportation pass yet. Anyway, it sounds logical that I’d use my limited transportation for rehabilitation rather than socialization. Or not. I am supposed to visit a friend at the other end of the country on Thursday, but the bidirectional journey costs me about half my allocated transportation kilometers. I’ve now setteld on going part-way by accessible transportation and part-way by train, thanks to a great service that allows consumers to combine accessible transportation with guided public transportation.

However, I’m completely overwhelmed by the whole idea of having to live with my husband in four months. He works full-time. We live in a tiny village where the nearest support agency is almost 20km away. We don’t have a clue whether I can get on-call support at all. We don’t even have a clue where to ask these things, and yet, because we moved out of area, social work isn’t going to help us. And because it might slow down my rehabilitation process, the professionals in control won’t let me go to an institution that is within our area.

I like our new house far better than the old one and, besides, it’s where my husband feels at home. I have never had a place where I felt at home at all, and I don’t want to make my husband feel out of place. The care in our old town isn’t great either. Besides, there’s just no going back. I agreed to move to the tiny village and we’ll have to deal with it.

However, because the powers-that-be take no responsibility for getting me proper care but are refusing to let me go to an institution that will, I feel like all responsibility rests upon my shoulders but I have zero control. I got this whole ball rolling with my comment, over a year ago, that I want to go live with my husband, yet now the ball is completely out of my reach.