Tag Archives: Lists

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

You Baby Me Mummy
Spectrum Sunday

Recent Positives and Accomplishments

I’ve not been doing too well lately. Last week in fact I landed in a major mental crisis in which I did some harm to my body. I physically recovered, but it’s still hard to find the drive to really live (as opposed to just survive) again. I’ve been meaning to write before. I mean, I know I don’t update this blog nearly as often as I should, but I really didn’t intend on going nearly five weeks without a post. Today, I’m trying to write a positive post by sharing my rays of sunlight, those things and events that brought a smile to my face lately, again. I will also share some of my accomplishments.

Day Activities

A few weeks ago, I was struggling a bit at the industrial group at day activities that I’d been placed in at first. The activities were hard and boring at the same time and I was getting easily overloaded by the other participants. The staff oticed and consulted a psychologist. She came in to observe and talk to me. It was then decided that I would switch to a group where the clients do sensory activities, like going to the snoezelen (sensory) room, simple cooking or baking and taking walks. I love those activities much more. I did feel a little weird at first, because the other clients are severely disabled. However, I feel I can be much more at ease now.

Today, we baked cupcakes. I also brought my lip balm ingredients earlier this week and made my own lip balm. This is a really quick activity, so I could do this with the staff before the other clients arrived. I also have been taking more walks, which I enjoy.

My Birthday

I know, my birthday was a month ago, but I wanted to remember it anyway. I got some lovely presents, including a stuffed cat that you can heat in the microwave. It is filled with lavender, which gives off a lovely scent particularly when the cat is warm. I brought this cat to day activities a few times, where a few other clients enjoyed it. I also got wax melts, fragrance oil for in my oil diffuser and an air pad.

Finally, an iPhone

I finally bought myself an iPhone about two weeks ago. I had my husband install it last Sunday. However, since I haven’t had any formal training on it yet and I was scared of ruining the thing, I didn’t feel comfortable working it independently. Today, I tried though and was pretty successful.

Fitness and Weight Loss

Last month, I resolved to be using the elliptical trainer for 25 minutes five days a week by now. I didn’t reach that goal. I also haven’t heard from the horseback riding school yet. However, I did more than reach my weight loss goal for this month, which was to lose one kilogram. I lost almost three. My husband also says I need to be content with my exercise accomplishments, as three months ago I barely worked out at all.

A Cornish Mum

Bucket List for 2017

It’s already January 9th. This means it’s a bit late for new year’s resolutions. I wrote about some dreams for the new year on my Dutch blog. The reason I called them dreams rather than resolutions is that I didn’t want to feel the pressure of having to actually keep them. I seem to like writing about my goals much more than actually pursuing them, after all. On my list of dreams was the mandatory weight loss goal that’s been sitting on my resolutions list for years. This year, I admitted that I mostly wrote it down out of a sense of obligation. I am just not that motivated for weight loss. In fact, yesterday I bought a bag of winegums and only shared them with my fellow patients because my husband threw around the risk of my developing diabetes. Now my blood sugar was in the low normal range last week when I had it measured, but still.

My most important goal, of course, is to get out of the freakn’ institution. Now my funding runs out at the end of the year anyway, so whether I’m ready or not I will be out then anyway. I can say that I’m finally feeling a bit ready though. It’s still hard, not knowing what sort of help I’ll get. Other than that I’m pretty much done with the institution, regardless of what my psychologist would like to believe.

Today, rather than repeating some general goals, I am going to write a bucket list of things I’d like to do in 2017. Here goes.

1. Learn to use an iPhone and buy one. I am waiting for the eye doctor who did my surgery in 2013 to write a referral for me to get iPhone use training at the blindness agency. Yes, it has to be an eye doctor referring you, which is stupid, since if you’re totally blind, what use is there in having an eye doc? I will either get this training at the residential home for elderly blind people in the institution town or at the blindness agency in the nearest big city, depending on whether I’m still in the institution once I can get started. Once I learn to use the iPhone, I want to buy one too. (By the way, iPhones are the most user-friendly smartphones for blind people, which is why I’d get training to use an iPhone.)

2. Learn to use Windows 10. I am pretty sure my computer isn’t going to survive 2017. This means getting a new one and that means learning to use Windows 10. Yes, I’ll still want a computer if I buy myself an iPhone, because smartphones cannot do everything PCs can and vice versa. I need to convince my new health insurance to fund a new version of JAWS, because my current one doesn’t work with Windows 10. I initially thought I’d switch to NVDA, a free screen reader, but it still has some major drawbacks.

3. Go swimming. My husband badly wants to go on vacation this year. I don’t care for vacation that much, but I’d love to swim in the sea. Alternatively, I want to finally go swimming at the pool again.

4. Choose and buy some more furniture for in my room at home. Currently, there’s just my desk and the remains of a cupboard. My husband wants me to get a bed in that room. I saw a nice bunk when we went to Ikea on Saturday, but it cost €280. I at least hope I’ll have a nicely-furnished room by the time I move out of the institution.

5. Leave the institution, for goodness’ sake. Need I explain?

What is on your 2017 bucket list?

My Achievements in 2016

The year 2016 is almost over and I feel pretty disappointed. It should’ve been the year in which I finally left the mental institution, but I didn’t. I mean, I’ve been resolving to leave the hospital every single year since 2008, but this time I thought I was so close. It’s even worse, because I get blamed for not having achieved this goal. My psychologist tells me I never want to leave and that I try every single trick to delay my discharge. This to her proves my dependent personalty disorder. Well, it wasn’t me who took four months to come up with that diagnosis. It wasn’t me who still hasn’t referred me to outpatient treatment and it wasn’t because for whatever reason I blocked this – I didn’t.

In many other ways, this year has been a disappointment. Still, I need to focus on the things that I did achieve in 2016. They may not feel important to me at this point, but that is only a matter of perspective.

1. I have not been in seclusion all year. I tend to think that, because I’m supposed to leave and there’s no seclusion outside of the institution, staff are less likely to ask me to go into seclusion. There is likely some truth to this, but I also have been acting out much less over the past year than I used to. It isn’t over yet – I broke a mug and self-injured only a few days ago. It’s better though.

2. My daily medication has been stable all year. I did finally get a prescription for a benzodiazepine to use at most twice a week as-needed. I hardly need it though.

3. I managed to binge eat less than I did last year. Though I resolved to get my BMI under 30 and this was a massive fail, my weight remained stable over the year.

4. We got an elliptical trainer at home. Though I didn’t use it as regularly as I’d have liked, I enjoyed exercsing when I did.

5. I found a craft that I enjoy. This is one of my biggest wins of 2016. Though I don’t make soap or skin care products as regularly as I intended to anymore, half a year in I still enjoy the craft. I also finally felt confident enough to make soaps and skin care products for other people. I never quite felt as self-confident about my other crafts. Recently, I experienced some setbacks, in that a few soaps I made over the past few weeks turned out worse than even my first soaps. However, I’m not about to give up (yet).

6. I didn’t give up blogging, even though I was tempted. I kept up one Dutch blog from early June until now, although December was a bad month. Consistent with more posts here, as always, my posting on there declined. I’m not about to give up eithehr blog though.

In short, my theme for 2016 has been “persevere”. I faced many setbacks and disappointments, but I didn’t give up. I hope that 2017 will be better than 2016, but if it isn’t, I hope I will keep on persevering.

You Baby Me Mummy

Currently – September 2016

Wow, summer flew by! Even though the weather is quite summerlike, unlike in July and most of August, it’s already September. I have several posts I would still like to write, but I am rather unmotivated for blogging here lately. It could be because my Dutch blog is three months old and it looks like this is going to be a keeper. I do like to write there, although I don’t write nearly as often as I used to write here. Anyway, because I’m not motivated for a proper blog post, I’d like to write a “Currently” post once again. Currently is hosted this time by Beth and of course Anne.

Reading

I’ve been reading a lot of books and not finishing any lately. I still didn’t finish Handle with Care by Jodi Picoult, which I started in June. I also started Still Alice by Lisa Genova then, but have been leaving that for so long that I recently started over.

A few days ago, I bought Do No Harm by Herny Marsh. It’s a book of stories from a neurosurgeon. There doesn’t seem to be anything about hydrocephalus or pediatric surgery in general in it. Still, it’s quite interesting.

Trying

Lotion making. I didn’t do much in the way of soap making lately, but on Tuesday, I tried once again to make a body lotion. It failed again, this time for completely different reasons than the last time (I guess that means I’m learning!). The whole lotion making thing sounds a bit more complicated than I initially thought it would be. However, as I watched a video tutorial on it that was recommended to me by some Dutch lotion makers yesterday, I was reassured that it also probably isn’t as complicated as some other people make it sound. For example, I forgot the heat and hold phase, which means you need to heat your oil and water phases separately to 70 degrees Celsius and keep them at that temperature for twenty minutes. Well, that doesn’t seem to need to be dome as precisely. We’ll see next time.

Hoping

To be more motivated and inspired to get things done. Like finishing those books I started, making soap and blogging. I now spend most of my time on Facebook or in bed. Would really like to get more productve.

Decorating

Nothing really. The last decorative soap I made was already two weeks ago. I have another one planned, but need to get the motivaiton to actually go about it.

To-Do Listing

I don’t have much on my to-do list at this moment, except for the things I already mentioned I’m hoping to accomplish. On Monday, I did finally cross off the routine medical exam I’d been delaying for months.

What are you currently up to?

List of Things that Make Me Me

During the past week and a half, a lot has happened, and yet so little has. I spoke to the patient advocate regardng the recent diagnonsense. She recommended a second opinion at another hospital. For various reasons, I decided against this. My psychologist did consult a psychiatrist at the brain injury unit, who told her she was right that brain injury and autism shouldn’t really be diagnosed together, but the same goes for borderline personality disorder and brain injury. Now I’m left with a very confusing diagnosis. I think it’s going to be personality change due to a general medical condition (brain injury), but my psychologist also said something about generalized anxiety disorder and attachment disorder possibly going onto my diagnosis. And I thought I was the one who collected labels.

This is all very confusing, because I rely on concrete labels for defining myself. How coincidental that I just opened a journaling eBook to a random prompt and it told me to make a list of my uniqueness, my marvelousness, my talents. These are not psychiatric labels, because, although some people consider autism a gift, I cannot say that autism itself should be one of my talents. With no further ado, here is my great list of things that make me me.


  • I am intelligent. I have a lot of knowledge and I can articulate it well most of the time. I am good at analyzing stuff.

  • I can persever(at)e if I truly want to achieve something.

  • I am sensitive. Sometimes, this sensitivity causes me to experience overwhelm to the point where I appear uncaring, but I truly care about other people.

  • I am creative. I write, I craft, I make soap.

  • I have a pretty cynical sense of humor. I remember on my first day in the psychiatric hospital, telling jokes about how you could tell the patients and staff apart.

  • I am stubborn and I like it. My husband jokes that my parents haven’t made up their minds about anything since the 1980s. I am thankful not to be that extreme, but I can really want to be right sometimes.

  • I am a semi-successful blogger even though I haven’t been blogging as much over the past few months.

  • I am a good wife.


This list should or could probably be longer. It also didn’t really cheer me up. However, it does help me see that I’m more than my confusing set of diagnosense.

Ten Ways in Which I’m Blessed

This week was a tough one. I have been stressed almost constantly over a lot of things. For this reason, I’m extra happy to find out that Finish the Sentence Friday is about blessings this week. It’s supposed to be a joint linky with Tuesday Ten, but I can’t find the Tuesday Ten post on blessings. Maybe it’ll go live next Tuesday. However, let me write a list of ways in which I’m blessed anyway. I hope it’ll cheer me up. Here goes.


  • I have my husband. I’m so glad I met him nine years ago.

  • I have my home in the tiny village.

  • I have my family. My parents are still in good health and my grandma is still alive and relatively well for a 92-year-old too.

  • I have my cat Barry.

  • I don’t have to worry about money most of the time.

  • I am in okay physical health.

  • I have my computer, with which I can connect to the Internet and interact with mostly supportive people.

  • I can write and express myself creatively.

  • I have my faith. Even if no-one else loved me, God does.

  • I am alive. I am not always happy about this, but right now, I try to see it as a blessing.

It was a bit hard to write this list, but I’m so happy I got to do it. I hope you are blessed in many ways too.

Currently – July 2016

I skipped the Currently linky, hosted by Anne and Jenna last month. This month, however, the words appealed to me, so I’m participating again.

Toasting

This word was what drew my attention to this moth’s post. One of the nurses was laid off in late June and she gave us patients a great toaster. The nurses already had one in the office, but we weren’t allowed to use it, because we had been bad at keeping ours clean, which had then broken down. Now, so far, we’re keeping the new toaster in good condition. I toasted a croque monsieur on it yesterday and it was delicious.

Going

For some walks. My new gravatar is a picture taken about three weeks ago when my husband and I walked along the water a few towns away from the tiny village we live in. Other than that, I’m not going anywhere much except for extending my week-ends on home leave. I am planning on starting ot stay home on Mondays by the 18th.

Smelling

Blue Soap

Vanilla, coconut and banana everywhere. These are the three fragrance oils that came with my soap making starter kit. I have truly contracted the soap making virus and have made so many soap hearts already I have almost lost count. Above is a picture of one of my best ones. People are now also asking for other scents, so I ordered three new fragrance oils that are due to arrive tomorrow: strawberry, cinnamon and violets. I also ordered a new mold.

Wearing

T-shirts that I’ve become too big for (or let’s just say that they’ve shrunk). I hate clothes shopping, so I tried to order some new T-shirts online, but the style I wanted was sold out.

Wishlisting

Way too many soap making supplies. I ordered many of the things I had on my wishlist already, but still want more. The store I ordered my starter kit at celebrates its eleventh anniversary today, so they’re offering discounts till Sunday. Of course, discounts don’t mean you won’t spend money.

I’m hoping my husband can also take me to a budget store, so I can look for storage boxes for my fragrance oils and colorants, empty lotion bottles, packaging and some other things.

Soap making aside, however, I badly want a new blender, since someone took apart my last one and neither I nor the nurses can fix it so it won’t leak.

What have you been up to lately?

Top Ten Plans for This Summer

It’s (almost) summertime. The weather has been quite good here lately. Particularly last week, the weather was lovely. This week, it’s getting slightly cooler and we’ve had some rain. However, the weather is still good enough to be outside in a T-shirt without a jacket. That’s one thing I love about spring and summer.

One of Mama’s Losin’ It’s prompts for this week is to share your top ten summer plans. I am really looking forward to this summer and I’d love to share my plans with you. Many are the same as last year’s, but unlike then, I did already make some of my plans happen.


  1. Go swimming. This is one of the items on last year’s bucke tlist that I couldn’t cross off then. This year, I’m participatng in a four-day swimming event this very week. I’m swimming only 100 meters each day, which is the shortest distance you could do. So far, I’ve completed two days of the event, that is really five days, already. You only need to complete four out of five days for the medal, but I plan on swimming each day.

  2. Have a barbecue. This is on last year’s list too. I didn’t think that I’d make this year’s barbecue on the institution unit, but now I think I will. It hasn’t been planned yet, but I heard the head nurse say she was going to get the DJ we have each year booked again.

  3. Sit in the garden. My home garden this time. I didn’t know last year of course that this year I’d have a real garden at home. The unit garden is also going to get remodeled soon.

  4. Eat strawberries, blackberries, blackcurrants, etc. I got raspberries from the market last week, but we don’t have them in the garden. The shrub my husband bought died before we could plant it. We do have many other berries, however. I don’t know how well they’ll do their first year, but I already ate a strawberry out of our garden last week.
  5. Go for walks. I walked form our old apartment to the institution a few times last year. This year, our walks have been in the tiny village. I hope to go to the woods sometime this summer too.

  6. Spend time with family. I’ve got to have an item on the list that I didn’t have last year. My sister and my parents are both coming over to our home next week (if my sister can get the day off) to celebrate my birthday.

  7. Eat the head nurse’s French fries and/or macaroni. There’s a nurse who lives in Turkey most of the year who comes over to work at our unit for the summers. It’s a tradition that she and the head nurse make macaroni from scratch once each year. It doesn’t sound that special, I know, but for people who normally get microwave meals everyday, it is. I’ve also heard the head nurse has plans for making us French fries on a Sunday in July. She makes fries about once a month, but usually on Saturdays, when I’m home.

  8. Wear my new dress. I already wore a skirt several times this year. I also bought two new dresses, one of which I already wore. I want to wear the other one too.

  9. Do lots of reading. This was one of the things I didn’t do enough of last year, even though I could. This year, it’s even easier, since I finally got a full Bookshare membership. I plan on reading a few books that I’ve wanted to read forever but never got down to buying as eBooks. Not that I couldn’t have bought them as eBooks, but I was planning on getting a Bookshare membership all along and so delayed getting the books. Reading books in DAISY format is still easier than reading eBooks. Of course, getting them from Bookshare, which is like a library for print disabled people, is cheaper too. I will review the books that I read here too.

  10. Write. I haven’t been blogging here as much as I’d like to this month or last month. After all, I’ve been feeling pretty uninspired. I hope to be inspired soon.


What are your plans for this summer?

Mama’s Losin’ It

Happy List – May 30 to June 5, 2016

I’ve been feeling extremely unmotivated to blog lately. It’s not that I don’t want to, or that there aren’t enough prompts or other ideas to get me started. I just can’t get my fingers moving and actually type that post. I don’t know whether it’s for that reason or in spite of it, but I’ve wanted to restart my Dutch website, blog or both. Of course, I’m uninpsired on that side of the language fence too. Just to get myself back into the swing of things, I’ll just write a list of things I’m happy about this week.



  • I’ve been doing okay in the exercise department. The physical therapist came to my unit on Monday to do exercise with me and I worked out some with the resistance band. On Tuesday, I went to the institution gym and did well there. I’ve also been lifting weights and working out more with the resistance band in my room. Yesterday, I went on the elliptical at home.

  • On a somewhat related note, the physical therapist measured the strength in my hands, believing my left hand would be weaker. Turned out they’re both equally strong (or weak). I didn’t ask whether my strength is much worse than normal people’s. It probably is, but for now, let’s forget that and focus on the fact that my left hand isn’t weaker than the right one.


  • On Wednesday, two student nurses from the locked ward went to the market and there was still room in their car. Since one guy ended up not wanting to go and another woman had just lost her privileges, I was the only one going. We bought fruit for my unit and the locked unit and I got some fish.

  • On Friday, my husband and I went out to buy fries and snacks. Yesterday, my husband made us tortillas. Both times, the food was great.

  • Yesterday, my husband and I went clothes shopping for me. We didn’t find what we’d hoped for, but we did find some great dresses.

  • The weather is good. We were supposed t get thunderstorms all week, but in the institution town we only got one on Tuesday. My husband did get worse thuderstorms. Over the week-end, however, we had beautiful weather at home.

  • Our cat Barry celebrated his third birthday today. My in-laws came and brought an apple pie. Barry himself got some of his favorite food.


What are you happy about this week?