Thursday, 4 August 2016

OSM Toy Review

A few weeks back I've been sent an OSM Toy by ChewiGem (here is their website: ) and I would write a review about it in return. I'm always happy to do things like this, as it gives me an opportunity to try something new that might benefit me, and I can tell others about my experiences as well.

First of all, let me explain what an OSM Toy is. An OSM Toy consists of a few discs that can be interlinked, and then twisted around. You can add as many discs as you like (or as you have bought).
It looks like this:

Here is a link to a video on Youtube where you can see how the toy is being interlinked and twisted (I do not own this video):

The OSM Toy can be used as a stress reliever and to stim (self stimulatory behaviour) with it. It can be very nice to use if you fidget with your hands a lot, like I do.

When I first held the toy in my hands, I honestly wasn't that impressed. I was excited to try it, but thought I would forget about it soon, and it would end up gathering dust somewhere in a corner. But then I tried it. I starting twisting it, while watching the tv, trying to relax from all the sensory input of the day. Before I knew it about an hour passed and my sister remarked that I must like the OSM Toy, as I was still twisting it in my hands. I barely even noticed until she said that! I was surprised. It did, in fact, subconsciously help me concentrate on the television.

I never review something just for myself. I want to know how others respond to it too. So I gave the OSM Toy to my sister for her to fidget with. She doesn't regularly fidget with her hands, like I do, but she does have a lot of restless energy that needs to get out in some way. So I wondered if the OSM Toy would help her relax.
Sure enough... About another hour later I remarked that my sister must like the OSM Toy too, as she was also still twisting it. She said it did in fact helped her relax and that the twisting is strangely addicting.

Soon my parents and brother saw the toy too and, without me asking them, they immediately wanted to try it and they liked it. It's a very simple toy, but the twisting is, like my sister said, very addicting and very relaxing.

There's actually very little negative to say about this toy. It does what it has to do and it does it well. If I did have to say something negative, I'd say that mine arrived with a tiny piece of one of the parts that interlink broken. You can see it in the picture below this paragraph. The bottom left black disc, where it interlinks with the white disc. But even though it's broken, it still interlinks and even properly twists. I have to say I'm pretty amazed by that. The price is fine for one OSM Toy, but if you want more to make the circle bigger, the price adds up quickly. But even one OSM Toy works great, and if it really helps you a lot and you really want more, it is totally worth it.

I still pick up the OSM Toy every now and then. I alternate between my stress ball and the OSM Toy. When I feel the need to squeeze in something, I'll get my stress ball. When I feel more of a need to fidget around with my hands, I'll get the OSM Toy.

Wednesday, 9 March 2016

Happy tears

Roughly 10 years ago I collapsed and saw my whole life get turned around for the worse. For a while I couldn't get up. For an even longer while I couldn't even get to the nearest supermarket, which is a 5 minute walk from here.

I went through all the medical evaluations the doctor could think of that matched my symptoms, and they found nothing. I went to a psychologist, who misdiagnosed and mistreated me.

Somewhere, around here, I started doing my fitness at physical therapy, which is the only place where I can do it now, and where I'm still doing my fitness.

After a year of this I found a new hobby, new friends, a boyfriend (who didn't last) and felt slightly better. But I was sure my real diagnosis was missed and I'd soon collapse again. Just as sure as my psychologist was that I would be fine.

So obviously, after a year, I collapsed again.

I went through even more, new, medical examinations, before being sent to a medical psychologist. She diagnosed me with chronic fatigue, helped me manage my fatigue, had many conversations with me, and sent me to a new and better psychologist to have me checked out for asperger's.

So soon I'd know I'm chronically fatigued (with all the other symptoms, like light sensitivity, muscle and joint aches, getting ill a lot, hyperventilation attacks, etc), and that I have autism. I got some help for this and some support at school. But not a lot.

With a whole lot of fighting, getting bullied, being misunderstood, being pressured, etc. I got through high school (VMBO) and got my assistent baker diploma.

But I couldn't hold a job. I was sick at home so often.

I applied for social security for the disabled (WaJong). The people who manage this (UWV) forced me to work 20 hours a week. I told them I couldn't. That I was sick way too often. They still forced me.
Obviously, this didn't work out. This was so much for me, that I got sicker and sicker again. I kept being sick at home more often, without knowing why.
I had days where I couldn't even get up. When I'd call in sick and say I couldn't get up, I would get a lecture about the importance of showing up at work. Both from my boss, and from my jobcoach.
Like motivation is the problem when I'm unable to get up...
Some of my colleagues were also not particularly understanding and found that they needed to be sure that I knew that...

After 2 years of that, I collapsed mentally in front of my jobcoach. She gave up and filed a report that I was unable to hold a job. I got a 'recovery period for an undetermined amount of time'.

I went to a chronic fatigue specialised centre, where they did some more examinations. They had me referred for an asthma test.
Yes, I had asthma! To know that was wonderful. Now the hyperventilation attacks were explained and treated.
I've been thinking I had asthma several times already, but my pediatrician didn't take me seriously. I'm glad the chronic fatigue specialists did.

But this didn't explain all my symptoms, and even when my asthma got stable, I still got sick a lot.

A few years passed. I occupied myself by putting up events and learning a lot about autism, and becoming an autism experience expert in the process. I also tried to get good coaching for living on my own, which failed (as you can read in older blogposts). I did some more things, but I don't have to make an autobiography here.

Now, several years ago I had a really bad response to some antibiotics. I had my blood and feces checked out. My pediatrician said I only had some raised inflammation levels, but that it was within the norm. She wasn't about to do more testing. I got angry and wanted those inflammations to be checked out, but I got refused.

Ever since my bowels were really sensitive to virusses and bad food, but my pediatrician ignored it.

A year ago I suddenly had 6 cases, of what the doctors then called a stomach flu, in 9 months. I sounded the alarm at my pediatrician. She said I was probably just unlucky.
I should've gotten a second opinion here, in retrospect...
She told me to wait it out.

I felt worse. I told her. She told me to see what happens. If it gets better.

At some point I couldn't eat anything with vibers normally anymore. It hurt me a lot and I couldn't digest it. I told my pediatrician this.
She said 'fine, I'll refer you to the specialist, but I don't expect anything from it.'

Well, as you have probably read in a blogpost from December: I have Crohn's Disease.
In my pediatrician's defense, she did apologise... And continued to make some excuses... Ok, no defense, whatever.

It hasn't been that very long since December yet, but it feels like ages to me. Since then I got 2 types of medicine (inflammation stopper and an immune system represser) and vitamin D to treat me. And I got regular blood tests (I'm very sensitive to the pain of the needle! Even with a local sedative!).
I got up with pain, I went to the toilet with pain, I ate with pain, I went to bed with pain.
Two weeks ago I got so sick from the flu, it hurt my bowels so much, I ended up at the emergency room to be checked out.
Luckily nothing serious was going on.

But today...
Oh today...

Today I got the new blood results back.

Guess what?

My inflammation levels are down to normal levels! Yea baby!
Everything was not for nothing!
I'm soooo happy!

Am I cured now?
I still have Crohn's Disease. It might still pop up someday, maybe even in a worse way.
But for now, the inflammation is down to normal levels and that's something I couldn't even dream of before!

Yea, I'm not there yet. My bowels still have some damage to recover, my vitamin D is going to take a while to build up and I'm still on the immune system repressors for maintenance.

But man! I got a diagnosis, a treatment and my inflammation is gone for now!

After all those years of fighting, I now have this.
After all those years of being ridiculed, pressured, not being believed, turned away, bullied...
I now have a diagnosis and a treatment and I know it works.

It feels like the end of an era.

I cried happy tears today.
Actual happy tears...

Monday, 7 March 2016

Asking more than I can give

There is one thing that has always hurt me a lot about my disabilities. That thing is that I will always have to ask more from the people around me than that I can give back, even when I try my hardest.

When I'm ill, I need a lot of support, because my body can't handle it very well. My autism makes me sensitive to pain and makes it hard to regulate time schedules for medicine, know when to find professional help and when not to, makes it hard to go to appointments by myself, and many more problems. A snotty nose or the flu may lead to breathing problems, which may lead to asthma attacks. All the bodily and psychological stress from all of the above may cause my crohn's disease to act up, both this and asthma needing me to find help urgently, for which I refer you back to my list of problems autism cause.

All of the above can also cause me to not being able to get up, or even faint, meaning that I need someone to get me food, drinks, help me get to the toilet, or even catch me.

When someone else gets ill, I will most certainly be prepared to return the favor. I'll be there! But with very limited energy. I will need to rest way quicker than anyone else to avoid getting sick too. Need something at that point? Can't do it, or I'll be of even less use to you due to the consequences of overstepping my limits.
Oh, yelling in pain? Erm, yea, I'm now frozen in place until there's a moment of relief, because of my hearing sensitivity. Need me to get in contact with the doctor? I certainly will. I just hope there won't be some social misunderstanding. Need me to keep track of your pills, doctor conversations, etc. while you're still overloading my system with yelling? Erm... How?

And this is just about getting ill.
How about the fact that I have emotion regulating difficulties, so I need to scream to let my emotions out sometimes, but when other people scream I get overloaded, so I need to leave the room instead of holding their hand?

Or how I can't keep track of routine, so others, or electronic devices, need to keep me on schedule, but I can't return the favor, because if I can't do it for myself, then how do I do it for others?

These are just a few examples of other people going overboard to accomodate my needs, where I can't give the same amount back.
Sure, I try really hard, and I don't think I have less value or something like that. I also know it's not my fault and that there's a reason I have those needs.
But I AM constantly aware of having special needs that I can't offer back.

Every once in a while this gets to me. Then I want to do something equal to what they're doing for me. I'm at a loss for what to do though.
So all I can do is say 'thank you' from the bottom of my heart and remember those people are still there for a reason; I must be giving enough when I give all I can.

Monday, 29 February 2016

Dear mom in the supermarket isle

Dear mom in the supermarket isle,

I see, and hear, you there with your child on the floor, who is having a meltdown.
You catch me staring at you with a very frustrated look in my eyes. You look back with a look on your face as if wanting to say: "What? Stop judging me. You have no idea what our story is. Try it for yourself for a day..."

But I do understand. I really do. Because you see... That look of mine wasn't meant for you, or your child. It wasn't a stare of disapproval, even though my highly annoyed face clearly looked like it.
You see... You don't know my story either. Don't worry I'm not angry at you for it. In fact, I sympathise. Of course you'd think I was judging from my stare.

But I have autism. And your child is causing a high sensory overload.
Maybe your child has autism too, and the sensory problems the supermarket causes is what caused the meltdown.
I understand. I really do. I had a meltdown in a supermarket last year too, and I'm an adult. Other times I know how to keep it in 'till later, but I do understand how your child is feeling. It's all so overwhelming.

But I can't stop looking so frustrated. You see, my sensory overload that your cjild is causing me is pushing me to the point where there's only so much that I can do to not start having my own little meltdown right next to your child. And then you'd have two people to take care of.
I can't keep my frustrated look away, because from the inside I'm exploding. That frustrated look is already me holding back.

At this moment I have to stop shopping, wether or not I have everything I need, pay for my groceries, and get to the car as soon as possible. In the car I'll have my own meltdown, all by myself. I won't be able to drive home until all of that is processed.

Mom in the supermarket isle... You don't have to worry about me. I'll be fine. Tend to your child.
All I wish to accomplish is to say sorry for making you feel judged all the time, and I hope that you read this and the next time you see me staring, you'll consider the posibility that I might simply be sensory overloaded, instead of judging you. Maybe then you'll feel less judged. Maybe.

Mom in the supermarket isle, I'm sorry for making you feel this way every time. I hope this letter can make a difference.


Your autistic friend who really does understand and care, even though it doesn't always look like it.