Gratitude List (October 17, 2020) #TToT

Hello everyone! I hope you’re doing well. I am feeling okay. I’m not sure I’ll continue with the #Blogtober20 prompts, but I will attempt to publish a post everyday anyway. That’s a way of participating in the challenge too. Today, I am writing a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful I am alive. Last week, I was in a major crisis. Though I most likely would’ve survived the attempt at harming myself I was intending on, I am so grateful I didn’t harm myself at all.

2. I am grateful for my staff. They’ve been so nice and helpful lately. They aren’t mental health professionals, but they do a great job of helping me understand why I’m feeling overloaded or anxious.

3. I am grateful that my husband supports me through it all. Like I said last week, I was afraid he’d be frustrated with me for landing in crisis. I am so glad that he didn’t react with irritation at all, even though I’d have understood.

4. I had some delicious treats over the week. On Tuesday, a staff gave us cheesecake for her birthday. There was still some left over on Wednesday too. We also got banana bread then. Then on Friday, we had delicious home-cooked chicken with curry and mayonaise. Today we had homemade chicken and sausage rolls.

5. My mother-in-law visited me on Thursday. We went for a walk and drank a cup of coffee in my room. She also brought me a new bra.

6. I am happy with my new Fitbit Inspire 2. I ordered it on Thursday and it arrived Friday early afternoon. I am loving seeing all my stats in the Fitbit app. For example, yesterday I got 56 minutes in active heartrate zones, all in the fat burning zone of course. I doubt I’ll be able to get into the cardio or peak zone at all.

The tracker itself takes some getting used to, since it has a touch screen, which I can’t see. I keep accidentally turning Do Not Disturb on.

7. I am grateful for relatively good food for dinner. As of last month, I am allowed to choose between a selection of meals for dinner. Before this, I had to turn off foods I didn’t like. This got pretty complicated. For example, I’d say I didn’t like beans because otherwise I’d get them with just potatoes and meat and no sauce. However, turning off beans would turn off chilli too. This led to me occasionally getting just rice, for example. Now I still occasionally get a meal I haven’t picked, but that’s okay too.

8. I am grateful for macrogol. And for apples and other fiber-rich foods. I had been constipated for a bit early in the week, which led to bad bowel cramps. Thankfully, I feel much better now.

9. I am grateful the partial lockdown we’re in right now doesn’t lead to a no-visitors policy in care facilities as of yet. I am grateful I am still allowed to go home to my husband.

10. I am grateful for the ability to be grateful. I started a daily gratitude journal in the app Day One on Wednesday. I did so because I downloaded a free book on gratitude off Amazon and the first exercise is to jot down three things you’re grateful for each evening for a week. It truly helps me so far, as without my gratitude journal to look back on, I may not have been able to get to ten things of thankful.

What have you been grateful for lately?

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

CP Day

Yesterday, I heard about an event on November 3 that I was immediately interested in. It’s the Dutch national CP day organized by BOSK, the country’s charity for people with physical disabilities.

For those not aware, CP is an abbreviation of cerebral palsy. Cerebral palsy is a movement disorder caused by brain damage sustained in utero, during birth or in a child’s first year of life. In my own case, I had a brain bleed shortly after birth.

The thing is though, I was never told that I have CP. My parents just told me I’m clumsy. I did get adaptations early in life, such as a large tricycle. I also had lots of physical therapy. When I was around nine though, my parent discontinued my specialist appointments. Even when I developed scoliosis in adolescence, they didn’t tell me. Scoliosis is a common consequence of hemiplegic (affecting one side of the body only) CP.

Last year, I asked my GP about it and was told I have acquired brain injury. Usually though, when someone acquires their brain injury in the first year of life, it doesn’t “count” as ABI. Instead, diagnoses are then made based on symptoms, such as CP in the case of movement difficulties.

CP is classified in five levels of severity. Obviously, since I don’t even know whether I was diagnosed with CP as a child, I’m not sure of my level either. I would have to guess I’m probably level 1 or 2, which are the mildest levels.

CP is not progressive and yet in some ways, it is. The brain damage that causes it doesn’t get worse, but adults can experience worsening pain, muscle stiffness and symptoms related to overuse and overcompensation.

On the CP event, there’ll be various workshops for adults with CP and parents of CP children. The morning workshop that most appealed to me, is about overload. I’d love to explore this from an a CP perspective rather than an autism perspective.

In the afternoon, the workshop I’m wanting to attend is on nutrition. A dietitian will speak about nutritional guidelines for people with CP. While CP affects movement in the limbs mostly, it can also impact on one’s gastrointestinal tract, because after all these are muscles too. I suffer with both constipation and reflux, which will be discussed.

Obviously, I still feel a little self-conscious about going due to my uncertainty about my diagnosis. Because I am sure I had a brain bleed in infancy, my main concern in thsi respect is that I’m not “bad enough”. My parents at one point tried to get me into a school for the physically impaired and were told (or so ‘ve heard) that I wasn’t disabled enough. Now of course I don’t mind not being that disabled, but then of course I shouldn’t be going to an event like this.