CP Conference Last Saturday

So I attended the Netherlands’ national conference day on cerebral palsy on Saturday. Before I went, i was incredibly scared. Would I be able to connect to other people or would I be left on the sidelines all day? Would there be people willing to help me navigate the school building in which the conference was being organized? Would I arrive on time? But my main worry was related to my own diagnosis of cerebral palsy, or rather the lack thereof. You see, I was never told that I have CP by my parents and was too young to understand medical jargon by the time they stopped taking me to specialists. Maybe my parents didn’t even know, as doctors do not always clearly communicate and my parents were mostly looking for reassurance.

My GP also was a bit vague when I asked him last year, citing a probably relatively recent letter saying that I had acquired brain injury. Now I do happen to know that doctors disagree on whether brain injury acquired shortly after birth counts as ABI or a diagnosis of CP or the like should be made instead. So I’m a member of Facebook groups for both CP and ABI. However, ABI is a diagnosis regardless of symptoms and CP requires mobility impairments. I wonder therefore, are my mobility impairments severe enough to count?

I arrived at the school forty minutes before the doors were officially open, but someone took me to a chair anyway and gave me a cup of coffee. Soon, a man I’d been talking to via Facebook messenger arrived too and we sat and chatted some.

Gradually, other people arrived and it was soon time for the official opening speech. This was partly about Steptember, a movement challenge to collect money for research on CP.

Then, a neuropsychology professor spoke about the effects of movement and mental or physical effort on cognition in people with and without CP. It turns out that effort, whether that be mental or physical, strengthens brain connections to the frontal and parietal cortex, which are responsible for higher-order cognitive functions such as planning, organizing and impulse control. He also briefly touched on the effects of music, which can also help strengthen these connections. In short, moving and exerting ourselves as much as we can within the limits of our CP helps our cognitive functions. Of course, past age 30, these brain areas no longer grow and actually decline, but still exerting yourself enables you to learn more effectively regardless of your age.

After this, you could choose to follow a workshop session. The one I followed was on overload. This was a bit of a chaotic workshop, as the presenter allowed for questions while presenting. I am quite familiar with overload, as a person with autism, but I loved to explore it from a CP perspective. I mean, physically I do have some more limitations than those without CP. As a result, walking may give me energy, but it also costs me energy more so than it does non-disabled people. This was rather interesting, because I often tend to sometimes give everything and more of myself physically and other times I tend not to bother. Something the presenter said that really struck a chord was that mental overload can be counteracted by physical activity and vice versa.

In the afternoon, we could also pick a workshop to follow. The one I chose was on nutrition. A registered dietitian had developed nutritional guidelines for children and adults with CP. Topics that were discussed included underweight and overweight. The presenter said that, as a general rule, people with CP need fewer calories than those without CP. The reason is that, even though our movement costs more energy and hence burns more calories, we tend not to move as much.

Another topic that was discussed was swallowing difficulties. Did you know that up to 99% of people with CP, even those with mild CP, have swallowing issues? I didn’t. This was so validating, because I happen to have some rather significant swallowing issues.

Other topics of discussion included reflux, constipation and bone development. There is little research into these, as particularly constipation and osteoporosis are common within the general population anyway.

Overall, I loved this day. It was also very validating. Not only did no-one say I don’t look like someone with CP, but I actually met several people who are at least as mildly affecte as I am.

Confessions of a New Mummy

Gratitude List (October 26, 2018) #TToT

Man, I really am falling into a writing rut. I don’t even know why. I’m still not feeling too well, but I wouldn’t say I’m seriously depressed either. For a bit in early October, I did feel extremely low, bu I picked up the pieces again reasonalby soon.

Today, to get myself motivated for writing again, I’m participating once again in #TToT. It’s not a weekly gratitude list anymore and I may be sharing some things I’ve been grateful for over the past few weeks.

1. A skirt-wearing day in October! This was already a few weeks ago, but I’m still so thankful for it. About two weeks ago, the temperature rose to 26 degrees Celsius and I loved it!

Generally speaking, the weather has been extremely mild here with hardly any rain. We got some rain only over the last few days and that wasn’t a lot. Today is one of the first days it’s really rather cold.

2. Sleep. Like I said above, fall weather came late this year but it well and truly came. I am very sensitive to cold, so I’ve been complaining for a few days that it’s cold already. This means that nothng’s cozier than crawling under the covers against my husband or with my sensory cat. The sensory cat is a soft toy that can be put in the microwave and then gives off heat and a lavender scent.

3. Swimming. At day activities, we go swimming every other Tuesday. Two weeks ago, I was a bit sick, so didn’t go. This week I did though. It was lovely. My Fitbit activity tracker says I swam 1200m total, which I can’t believe but oh well.

4. A full day at day activities. Three weeks ago, I got permission to come to day activities one full day a week in addition to the three other mornings. I now go on Tuesdays for a full day and Mondays, Wednesdays and Fridays in the morning. I am still settling in a bit but so far I love it.

5. Making smoothies. I really, really need to get into a healthier eating habit again. I haven’t been on the scale in months and I’ve probably gained lots of weight. To get myself motivated, I bought a lot of frozen fruit and a can of soy milk last Monday. Bananas were sold out, so my husband bought those on Tuesday. Yesterday, we made a banana-strawberry-soy milk smoothe and it was delicious!

6. Horseback riding again. Some of my fellow clients at day activities go horseback riding at my riding school on Friday afternoons. I go on Friday afternoons too, but usally the class after theirs. Today, one of these other clients was on vacation, so my staff offered to ask whether I could come in her place and I could. My assigned support worker from day activities walked beside my horse. It was a lot of fun!

7. My very accommodating staff. My support coordinator and home support worker are going out of their way to help me. So are my day activities staff. Particularly, they offered me to come to day activities two full days on December 27 and 28, since the other days of that week, the center is closed for Christmas. They’ll have room for me even on that Thursday, which is normally my day off. I’m so grateful for this!

8. Accessible games on the iPhone. I never took much of an interest in accessible computer games, because I believed most would be very boring. Now this week I decided to take a look at the AppleVis directory of iOS apps in the Games category. Of course, most games that are really popular with sighted people, are totally inaccessible. However, some accessible games are pretty cool after all. I so far downloaded Dice World, which is a collection of six dice games, and Alter Ego.

Alter Ego was originally created as a fully text-based game in 1986 but was adapted for use on the smartphone. It is a game in which the scenario is that you’re born and will eventually die. The life you lead in between will depend on your answers to a lot of multiple-choice questions. On my first round playing, I chose to be a very angry, rebellious baby and ended up with burns from an iron in infancy and killed by a kidnapper in childhood.

9. Twister fries! I have no idea whether twister fries exist in other parts of the world and, if so, whether they’re really called twister fries. They are my favorite type of fries, but they had apparently been taken off the menu at my local cafeteria. Last week at his once-a-week round to the cafeteria, my husband informed me that he had a nice surprise for me and it turned out they were back. I enjoyed them both last week and this week. I also love love love the African-style burger they have on the menu.

10. My mood being slightly better. Like I said, I had a really low few days earlier this month. Over the past two weeks or so, my mood seems to have been slowly but steadily improving. I cannot say I feel good, but I don’t feel that bad either.

Ways to Take Better Care of My Body #Write31Days

Welcome to day 14 in #Write31Days. Last week, I wrote a post on the topic of what my body is telling me. Today, I’m writing on a similar theme. The prompt from The Self Exploration Journal I’m using today supposes that your body is a temple. How could you better take care of it?

There are many ways in which I could take better care of my body. I’m already doing a lot better though than I used to. Like, until I was eighteen, I wouldn’t touch toothpaste and would brush my teeth with just water. Then, I went to the dentist to find out I had seven cavities. Filling them (without anesthetic) was horrible. From that point on, I started using toothpaste, buut I still had trouble sticking to a regular teeth-brushing routine. I struggled with this for many years to come and have only recently been able to consistently brush my teeth twice a day. I’m still not doing it very well, but I’m getting better.

Another way to take better care of my body is by getting off my behind. As a child, I was fairly active, but my activity level declined sharply in my teens. I got a computer, which meant hours upon hours of screen time. At this point, I’m still pretty sedentary, although I love walking. Since I cannot leave the house on my own, I need to think of ideas to fit in more activity at home. I already go on the elliptical regularly, but I’m thinking I could be dancing too.

Sleep is another aspect of body care that I’ve improved in. As a child and teen, I’d get no more than five to six hours of sleep a night. Now, I make sure that on week days, I get eight to nine hours of sleep. On week-ends, I get much more. That probably means that I’m still not fully rested from those eight to nine hours on week days, but I do’t know how to fit in even more sleep.

An aspect of body care in which I really need to pick up the pieces again, is food. I am doing better than I was when in the institution, when I’d binge on candy twice to three times a week. However, I’m still snacking a lot more than I should.

In what ways could you take better care of your body?

20 Things I’m Grateful For in Life #Write31Days

Welcome to day twelve in #Write31Days. Man, I’m late writing my post today. I really planned on writing two posts today, one for #Write31Days and the other for Ten Things of Thankful. I may write a #TToT post for this week tomorrow anyway, but I also found a great topic that fits both #Write31Days and #TToT. It is to list twenty things (or people, I assume) you’re grateful for in your life. Here goes.


  1. My husband.

  2. My family. Even though my family of origin isn’t very supportive, they are still there. My in-laws are especially importantt to me.

  3. My great team of home support and day activities staff.

  4. My online friends. I don’t have any real-life friends other than my husband, but I appreciate the network of supportive people online.

  5. Our cat, Barry.

  6. My relatively good physical health.

  7. The fact that I’m mentally stable.

  8. More than enough food in the pantry.

  9. A roof over my head.

  10. My computer and iPhone.

  11. Social security.

  12. Never having had to worry about money.

  13. A relatively good health care system. It could be better, but it could also be a lot worse.

  14. Psychiatric medication.
  15. The sensory room at day actvities and sensory supplies at home.

  16. Sleep.

  17. Being a lot fitter than I used to be.

  18. The readers of my blog. I can’t seem to stick to just one blog project forever, so I’m glad some people keep following me.

  19. The weather. It’s really good for October right now, but generally speaking it’s never all that bad.

  20. Being alive!

I must admit that in writing this post, I did cheat a little by checking back at a similar post I’d written several years ago. I could probably think of enough things without cheaitng, but that would take me longer, and it’s now time for bed.

Weekly Gratitude List (September 14, 2018) #TToT

I’m still not doing very well. Depression seems to be sinking in deeper. Because it’s only been a few weeks, I’m still hoping I’m just having a bad mood for a bit.

Kristi shared in a comment on my #TToT last week that her friend who started the link-up, did so to cope with her depression. For this reason, I’m trying to list the things I’m grateful for again too.

1. A good consultation meeting on Monday. Like I said on Monday, I discussed my options for getting appropriate care. An ideal situation would be that my husband and I could live together but close by a care facility. Since this is most likely not possible, I may have to choose between managing as I do now or going into supported housing. As it turns out, my husband is supportive of me regardless of the outcome. He says he’ll stick by me even if we can only see each other during the week-end.

2. My mother-in-law. On Tuesday, I was feeling so depressed that I didn’t really feel safe staying at home alone. I didn’t have my PRN medication at hand, so couldn’t just sleep it off either. I texted my mother-in-law and she offered to take me to my in-laws’ house. I feel so relieved that she did.

3. My in-laws’ dog, Bloke. While at their house, my mother-in-law took me to walk him. We joke that he’ll be a trained guide dog by the time he’s eight. He is a labrador retriever, so the right breed, but he’s five already and pretty disobedient.

4. My physical health. I had a nasty cold early in the week, but am feeling somewhat better now. Not great, but good enough to go on walks and to exercise again.

5. Nice staff at day activities. I was able to talk some with them and this morning, one took me on an early walk. One of the staff can be a bit blunt and I’ve had a few issues with her, but overall everyone’s nice.

6. Drinking a nice latte with my support worker. Because my support coordinator is on vacation – she’ll be back next week -, my support worker offered to take me on a special activity yesterday. We drove to a cooffee house in her town. I’d never had a real latte, just instant cappuccino. It was really nice.

7. French fries. Both on Sunday and today, my husband and I ate fries with a snack for dinner. Don’t tell the dietician – not that I have one -, but it was delicious. Overall, I’ve not been watching my diet and have been overeating way too much this past week. Let’s hope this depression thing lifts and I will be arsed to eat healthfully again.

Linking up with #TToT again.

#WeekendCoffeeShare (September 8, 2018)

This week, I’m once again joining in with Weekend Coffee Share. On the surface, I don’t have much to write about, but I’ll try anyway.

If we were having coffee, I’d ask you how you have been. It’s sometimes hard for me to remember this, but when I’m feeling like I’m now, I’d genuinely much rather hear about your day than share about mine. Since I don’t know who will be joining me for coffee, as this is just a writing exercise, this is rather fruitless though.

If we were having coffee, I’d try to share how off I’ve been feeling lately. Most people notice right away, but it’s hard for me to put my finger onto what is going on. I guess I may be in a prolonged freeze mode. This is one of Pete Walker’s four types of trauma responses and it describes a state of dissociation. I’m so disconnected from myself that I can’t even tell who I am right now. I mean, yes, I respond to the name given to me at birth, but I hardly connect that name, or any of y alters’ names, to my current experience.

I don’t know what triggered it. I’m not having flashbacks. I’m not even having memories that aren’t full-blown visual flashbacks. Rather, I retreat into my own inner world with a book. Currently, this is Where Has Mummy Gone? by Cathy Glass. This is a very sad foster care memoir. I know I’m supposed to feel sympathy for the child who is the main character in this memoir and on some level I do, but it’s all very distant.

If we were having coffee, I’d then chatter on about random happenings. I’d share that I did finally go on the elliptical yesterday evening after not having been on it in over a week. I’d share that we had pizza for dinner yesterday. It was salami day or so I’ve heard, so I had a delicious salami pizza.

If we were having coffee, ‘d tell you that yesterday marked 130 years since the first incubator was used for a baby. My mother posted that on my timeline on Facebook last night. Since I was born prematurely and spent time in an incubator myself, this is rather intriguing to me.

If we were having coffee, I’d try to round up the conversation then, because I feel my shoulder hurting badly, so I want to do some exercise.

How is your weekend going so far?

Weekly Gratitude List (September 7, 2018) #TToT

I’m extremely tired and don’t feel like writing. I’m also falling into the trap that killed my other blog, taking it too seriously. That is, I can’t keep from comparing myself to “influencers”, which I am not and will never be. It’s a sad truth, but to be truly influential these days you need to be able to create visual content, which I, being blind, can’t do.

As a result of all this, I’m feeling a bit sad today. This makes me even more unmotivated to look at the bright side and create a gratitude list, but I’m going to try anyway. Here, hence, is my weekly gratitude list.

1. A nice walk with my husband on Sunday. I’ve had trouble sticking to an exercise routine over the past week. In other words, I’ve not been on the elliptical at all. For this reason, I’m extra glad my husband offered to go on a walk with me.

2. The new intern at day activities. She’s nice and seems very competent.

3. A good visit with my in-laws on Tuesday. We had a power outage, so I texted my mother-in-law whether I could stay with them to do some computer work. My husband’s 16-year-old cousin was staying at my in-laws and she was delighted to see me.

4. Nice food. We didn’t have the most high-class meals this past week, but I don’t like those anyway. My husband makes delicious pasta – very simple but so good. I also have been eating a ton of fruit lately.

5. Still another day that the weather was good enough to wear a skirt. I wrote a few weeks ago that we’d probably passed the last day for the year that I could wear a skirt, but Wednesday was a surprisingly warm day. I loved it. Thursday was chilly and rainy, but today has been okay too.

6. My home support and mental health staff. I wasn’t feeling very well yesterday – very tired, confusd and dissociated. My support worker noticed and was trying to help me as much as she could. I rang my mental health team eventually. The on-call nurse didn’t know how to help me, but offered to leave a message with my nurse rpactitioner to call me back. He did and he helped me find ways to snap out of the downward spiral.

7. Eating a delicous macaroon today. Because the weather was still nice and we didn’t know whether it’d stay that way (it didn’t), one of the day activities staff took us to the marketplace early this morning. We bought a delicious cookie for everyone and I chose a macaroon. It was sweet, but oh so delicious!

8. Horseback riding again. The weather was okay again in the afternoon, so we actually went outside. It was so lovely. Angie, my horse, did a very good job and the trotting was so much fun.

9. Books. I bought the new Cathy Glass book yesterday and have been greatly enjoying it. For those not familiar with her, Glass is a UK foster carer and writer of memoirs about the children she’s fostered. This new book is really sad so far, but it’s good.

10. Getting so many things I’m thankful for listed even though I originally wasn’t motivated for it. I just had to write that as a separate item to get to ten things. Not that we’re required to do ten things, but it just looked so cool.

Linking up with Ten Things of Thankful as usual.

Weekly Gratitude List (August 31, 2018) #TToT

It gets boring, but time definitely flies. Tomorrow it’ll be September already. Fortunately, the good weather isn’t fully over yet, as they’re saying Sunday and Monday it’ll be sunny and warm once again. I love that.

Since it’s Friday again, it’s time for my weekly gratitude list. I notice these have become somewhat of a chore, but I hope that by continuing with them, I’ll take care to appreciate the little things in life more.

1. The takeout roti my father-in-law bought for my husband and me on Sunday. Normally, we go for Chinese, which gets boring. This was a lot more delicious.

2. Several nice walks this week. I once again went for the long walk at day activities on Monday and also went for a walk with my support worker on Thursday morning.

3. Being nominated for my first blogging award on this blog. I was nomiated for one on my other blog about a year ago, but like I’ve said, I took that blog too seriously to do blog awards. I genuinely appreciated it this time.

4. Swimming on Tuesday. On MOnday, my staff at day activities decided to invite me to participate in the swimmin group, initially just for that week. It was fabulous! I really hope I can continue to go swimming, but a volunteer already offered to watch me if there are not as many staff people.

5. Being supported by a lot of people in the multiple community. I recently joined a group for those who don’t have full-blown dissociative identity disorder, because they either have alters but minimal amnesia (me) or have amnesia but their alters are not as formed. I don’t like labeling myself that much, but I do it for the sake of finding support. After all, when you’re multiple, it’s either trauma-based or endogenic (natural) and we’re definitely not endogenic. It feels weird to join groups for DID or other dissociative disorders when we don’t have that diagnosis anymore and are not really looking for it either, but we need the support somehow. Thankfully, the people in the dissociation group are very nice.

6. Starting back into adaptive horseback ridiing after the summer break. It was absolutely so relaxing. My horse, Angie, was more obedient and less lazy than she usually is.

7. Eating some fish this afternoon. Usually when my mother-in-law takes me to horseback riding and the pharmacy on every-other-Fridays, we go to the fish stand that’s near the pharmacy. They however were gone for a few weeks. Their fish isn’t great, but this time it was quite tasty and above all it was hot.

As usual, I’m linking up with Ten Things of Thankful.

Weekly Gratitude List (August 24, 2018) #TToT

Wow, it’s Friday again! Time flies! This means it’s time for me to write my weekly gratitude list. Here goes.

1. The fact that I did in fact exercise everyday last week. Thhat means I broke a record! I could go this far this week again, as so far I’ve been doing some exercise-worthy moving each day of the week.

2. An even longer walk last Monday. The staff who’s gettinb back into work was at our day activities group again last Monday. This time, we walked for over an hour. I loved it.

3. Finding a cool Turkish shop in the nearby city. This city is called “the capital of Turkey” by people from the surrounding area. I went grocery shopping in the city on Monday with my support worker, because the next town’s supermarket, which is closer by my house than the city’s, had sold me rotten blackberries on Friday. The supermarket visit wasn’t too much of a success, but I hope to be able to get more delicious fruit at the Turkish shop next time.

4. A very good psychiatrist’s appointment last Tuesday. It still has me in awe, as I felt so thoroughly validated.

5. Having made delicious toast with cheese, salami, tomato and pesto at day activities on Wednesday. It was a little chaotic, but still it was a lot of fun.

6. A lie-in yesterday. My support coordinator wouldn’t be here till 3PM and I had no other obligations, so I slept in till past 11AM.

7. Being able to discuss my wishes with the day activities staff. Today, the day activities coordinator had heard about my enjoying the long walks. Because this extra staff who took me this week will eventually go back to her own group and no longer be extra, the coordinator offered to try to find me a volunteer. That’d be so cool.

We also discussed my creative endeavors. The day center have a stand at the town’s Christmas fair each year and they make crafty things for that. I got talking about all my creative endeavors, like jewelry-making and soap making. I may try to get some of these things going at day activities.

Linking up with Ten Things of Thankful again.

My Relationship with Food

Today, I’m paging through the eBook Journal Writing Prompts for Child Abuse Survivors. It is definitely worth it. One of the prompts, in the third chapter, which deals with shame, is about your relationship with food. I am going to write about that today.

I am fat. There I said it. I am no longer obese, fortunately, but I still need to lose over 20lbs to be at a healthy BMI. Besides, my body fat is concentrated primarily on my stomach, which means it’s all the more dangerous for my long-term physical health.

I have a long history of disordered eating. When I was around 14, I “wanted” to develop an eating disorder. No, I didn’t read pro-anorexia sites, though I probably would have had I had access to the Internet back then. I didn’t really want to have anorexia, but I wanted badly to overcome the painful relationship with food I had by this time, and my way of doing so was to develop an even more harmful attitude towards it.

The origin of this even more harmful attitude was probably shame. My parents would regularly yell at me for eating too much and I badly wanted to break this habit, but I didn’t knowhow.

I didn’t stop overeating, but I started obsessing over how it’d make me fat. I started keeping food logs and commenting on how much I’d eaten, but it didn’t help me actually stop overeating.

I remember at one time calculating my BMI, which was a little above 20 at the time. I thought that should soothe my mind and it did in a way. I wasn’t fat, after all. Looking back, I now realize said BMI calculator was geared towards adults and a BMI over 20 is in fact overweight for a teen.

I never developed a full-blown eating disorder, even though a part of me engaged in a lot of disordered eating patterns, including purging, up till fairly recently. In fact, this part of me – she’s called Agnes – was the one reasoning last Wednesday that diarrhea is a good thing because it helps me lose weight.

I’ve had a fairly normal relationship with food over the past year or so. At least in terms of behaviors. I no longer purge, rarely overeat and do exercise regularly. However, like I said above, my thought patterns are still pretty disordered.