Thursday, 4 August 2016
Wednesday, 9 March 2016
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.
Today I got the new blood results back.
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
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,
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.
Sunday, 13 December 2015
I am just going to say it outright: I have Crohn's disease.
Now, before you get all panicky, hear me out.
I've been walking around for many years with bowel problems now. Doctors didn't take me seriously. Some tests were done, but never proper tests by specialists, so nothing specific came forward and my pediatrician wouldn't do any more tests or refer me to a specialist, even though the problems never fully disappeared. They only flared up every once in a while.
That is, until last year. Suddenly I had 6 stomach flues in 9 months and after that all my symptoms worsened. In hindsight I'm guessing the stress from the unfitting coaching and training caused Crohn's to flare up.
I had several visits to my pediatrician, until she finally referred me to a specialist (to check me out. Not 'cause she suspected anything specific). This specialist soon had a suspicion, which thorough testing and a colonoscopy confirmed: Crohn's disease.
But my response was mostly (not a 100%, I did have a few tears at some point) one of relief. This surprised many people and had some even question if I even understand the nature of the disease. So I'll explain myself.
Yes, I do understand the nature of the disease. I've been told by the doctor that I have only 2 inflamed spots, no blockades, cysts or other such things. This makes it mild at the moment.
The doctor told me that if the medicine catches on (we'll see in time), he expects I'll be with minimum symptoms and I can switch to a medicine meant to simply maintain it.
Seeing as I first had a diagnosis (chronic fatigue) that simply meant "We have no idea what it is, or where it came from, or what to do about it. Just accept it." and now I have a diagnosis that goes "We have no idea where it came from or what it might do in the future, but we know exactly what it is and we got many possible treatments" I actually feel like I made a step up!
Ok, now for the serious, darker part. I read online that 3 out of 4 Crohn's patients need bowel surgery at some point. This scared me and is what caused the tears at some point. I started doubting if I was indeed taking this too lightly and asked about this on a Facebook group for patients with Crohn's disease. They said I was right to be happy about having a diagnosis and having it be mild. They did also say that Crohn's disease is different for everyone and can just randomly turn around at some point. But when and if this moment is ever to happen, nobody knows.
They say that some people with mild Crohn's live their lives almost symptom free, and others feel fine one day, and suddenly need to be taken to the hospital the next. And everything in between.
They said that because the future for Crohn's disease is so unpredictable, I might as well enjoy it while I still have mild Crohn's disease and not worry about the future too much.
This is why I'm mostly relieved. No, I'm not without grieve. The possibility of bowel surgeries in the future does scare the heck out of me. But I can't just focus on that, as it will absolutely destroy my life. So instead I focus on what is now. And what is now?
Now I have a diagnosis AND treatment AND a possible future with minimum symptoms, where first none of these things even existed.
Wednesday, 21 October 2015
I know it has been a VERY long time since I last blogged. I apologise for that. Some people have even been wondering if I stopped blogging entirely. I didn't. I was busy with my training to learn to live on my own. They're very set on privacy there, so I wasn't allowed to write about it. Not even without mentioning names. And most of the things worth writing about involved me in interaction with others.
Seeing as most of my life revolved around the training, I put a pause to writing.
It was a shorter pause than I expected though, as the training didn't work out well for me. The coaches couldn't give me the kind of help I needed, which had me crumble down more and more. It's not that I didn't learn anything. In fact, I learned quite a bit! But the lack of the kind of support that I need took quite a toll on me.
I decided to stop, to protect myself. Shortly after I went into a big panick attack and collapsed. It was a pretty horrible experience.
Everything just seemed wrong. My trauma got triggered (authority figures who are supposed to catch me when I fall, who don't), I was exhausted beyond believe, I didn't feel prepared for the future and I didn't know how to move forward. I felt like everything that I would do would just end up horribly. This made that big collapse happen. Because if everything you do feels wrong, then what do you do? I didn't know anymore. Childhood all over again.
But this time it was different.
I wasn't alone. Well, I wasn't as a kid either. I had my parents and siblings. But they were at a loss for what was happening too back then. Fighting to help me and to find help.
Now they knew exactly what was happening and what was needed. They were being amazing. They were my first line of defense in fighting this feeling and I couldn't have done it without them. My psychologist was there for me too. Not just with appointments, but also calling me every day, so I could unload every little bit of panick and deal with it.
Besides all of that great help, I got you guys. My friends. My readers. My supporters. My volunteering work colleagues. Facebook groups. Tweeps on Twitter. Everyone.
Wow! I was, and still am, just amazed at the people who are there for me. I actually had to tell some people to hold on, I'd talk to them later, because I had so many concerned people wanting to know how they could help me, and I couldn't tell my emotional story that many times over.
What a luxury problem is that?? I'm not saying 'stop asking me, it's too much'. I'm saying 'even though I can't always adress everyone at the same time, thank you for asking and keep doing that. Because it makes me know and feel that I'm not alone and that people care for me.'
Thank you so much!
After a few weeks, I started doing my volunteering work as an experience expert again. There were many people who needed help. Some even with huge problems, that had me put things in perspective and wonder if I should be dealing with those things right now.
But then their gratitude... The same gratitude that I'm feeling towards all my supporters. And then I know it's worth it. That this is why I love doing this. Knowing that I can make that same difference in someone's life is what makes me happy and stronger too. You guys give me the strength. You light my inner flame. And if I can share some of that flame with others too, I'd gladly do so.
I know this is a very cheesy blogpost, but I felt it had to be said. I was watching Youtube videos from Markiplier. For those who don't know: He's a Let's Player, which means he plays games, records it and puts it online. Markiplier is a great person, who just loves to put smiles on other people's faces. He often thanks his community for all their support.
I was nodding in agreement when he was talking about how much their support helped him. Sure, I may not have millions of subscribers like he does, but I do get the feeling of going from almost nothing to a full fledged support system.
And then it hit me: Did I ever say thank you? Maybe to individuals, yes. But did I ever express my thanks publicly? Should I? Yes, I think I should!
So I decided to write this.
Thank you so much for being there. Everything from a small note of support, to being there day in and day out, and everything in between. It's all so important to me.
Keep being awesome everyone.