Sunday, 13 December 2015

New diagnosis

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

Thank you

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.

Thursday, 29 January 2015

Moving into my new place

It has been a while again since I last made a blogpost. This is because I'm busy with moving into my new place, where I'll be learning how to live on my own.
I've never moved to a new house in my life. I've always lived in the same city, in the same house. This worked fine for me. I'm not moving to a new city, but just moving in itself is a whole new experience for me. I never knew how much needed to be done, how many new skills you need to learn, how much certain things cost, what companies you need to deal with, what insurances to get...

It's all so much!

And that's just all the practical stuff. I have problems with change, remember? This is a really big change! So we had a big meeting with my psychologist, two coaches, my sister and my parents. In this meeting we decided I'd move at my own speed. No hurry. The move is a learning experience all by itself. No need to rush it.

This makes me the last person in the building to make the full move. This has hurt me a bit, as it took me back to the time where I still went to school and I immediately was the odd one out, because I couldn't go to school full time. People would ask me if I wanted to tell people about my disabilities or not. I would tell them there's no point in hiding it. I'll be 'that girl that's always absent' anyway. Might as well explain it to them.
This is how I felt about moving in last too.

But the other guys (yes, everyone in the training, besides me, are guys) have been very nice about it. They have offered their support where-ever they can. Bless them!

As you can read in the above segment, the move is also bringing about a lot of feelings from the past. In other words, my trauma. I'm going to be around a group of people my age 24/7. That's bound to trigger a thing or two from my past. And it has. But we're all working on it together. I really hope this will end up to be a good experience. That'll be so great! I've already ran into a few obstacles. Other people having other routines than me, my coaches not knowing fully how to specifically communicate with me, having to rethink my financial situation, etc.
The last few weeks haven't been easy for me. But I got such a great support system. I love everyone who have supported me so far and is still doing so.

It's hard to write about every aspect of moving into a new place. There is just so much! It has an impact on all of my disabilities, but also on the whole of me as a person. I think I already thought it wouldn't be easy at all, and even then I might've underestimated it a bit.

But right now the walls are painted, the floor is polished, the curtains are up, the bathroom is functioning... All that needs to be done now, in a practical sense for my room, is to put in furniture. Then the room is ready for me to move in.

I won't lie to you. I'm scared. I really am. But I'm also excited. Excited enough to push through my fear. So let's go for it!