Struggling

I still feel like people don't understand. I couldn't find any sleep last night either, so I missed my first lecture at University this morning. But then I pulled myself together in order to at least attend the math tutorial. Needlessly to say that this was a bad idea, I can't even remember a thing that was said, I'm just feeling way too dizzy. Only comment today I got was "oh you look sad", well yeah I thought you realized I was dealing with a big amount of pain last night when we had a conversation. Just because I pull myself together, wear make up, trying to look fine, doesn't mean I'm fine. I love how open Kelly is in this video about the times a person with an invisible illness is struggling. I'm so sorry she went through this but at the same time this video yields hope to me. And the feeling of not being alone with this. Goodnight people, I need to catch up on some sleep. 

Praying for an End

I feel pretty hypochondriac. Everything was fine until sunday when I went for a run in the evening (didn't die directly after 2 kilometers, was more like 3, yay!). Everything was fine until the bleeding started. This is always one of the scariest parts out of all of this. It sounds weird but you get so used to feel pain all the time that you hardly recognize it when it is there and when it's not. It's just something like a permanent base line to your life. Half a year from now, I would have taken pain killer for this amount of pain and I never took these until I couldn't handle the pain any longer. I really don't understand why some people take pain killer because of their period. That pain feels like nothing to me right now. Horst has really moved my pain scale. 

Well and here we are with the bleeding. Oh and of course Horst. But I guess I'll leave him out in the enumerations of my symptoms in the future, just because he is always there, guess I found my man for the rest of my life, uh. I'm really trying not to freak out but being honest there is no way I'm not going to freak out and overthink things. To me there is no scarier thing in life than your body bleeding for no allegeable reason but the next drive of my IBD. I feel so exhausted, tired and dizzy the whole day, I wish I could sleep until I'm no longer tired. But guess this would mean that I would have to sleep forever. I'm so freaking sick and tired of being sick and tired. Honestly, it sucks. Fortunately, I immediately got an appointment with my GI (my belly doctor) who put me on new medicine, one might call it drugs. So here we go, another 9 weeks of testing, whoop! However, I had to give up my diet, on one hand I felt worse (not sure whether this is related to the diet) and on the other hand I'm not able to eat a lot of things right now, only what I'm really hungry for and this includes things like noodles... bread... etc. So unfortunately, no more 21 day challenge by TCJF.

Just a normal day in the life of an IBD patient.

People tell me to stop being sick and to stop taking so many pills and other kinds of medicine. The thing they don't get is that this isn't my choice. Not at all, certainly.

Seriously, I cannot express how sick I feel right now. I'm still spotting the astonishment in the eyes of people when I tell them how bad it really is after they told me "Well, it can't be that bad". Honestly, I'm going to have an extra post just about things you should NEVER say to someone with an invisible disease.

Furthermore, I'm turning 19 next week and a lot of people ask me for things I wanna have. My one and only wish is to be healthy again. Or at least to have several years of remission. Impossible. So what do I wish for instead? Right, a fancy and colorful transport box for my pills. Oh boy, I guess my life has been changing pretty much lately. Still, I'm turning 19, and goddamn, I'm so thankful for that. Remember, bleeding from the inside without knowing the cause is by far one of the scariest things in life.


Still, I'm not (never ever) going to end a post with negative vibes, so here come the positives vibes, whoop!

#1 I had like the craziest idea, one might consider calling it the typical crackpot idea. I signed up for the annual run for care run. Sounds good, eh? It is to support people with Multiple Sclerosis in the region. The thing is, that run is 9km long. Oh and well, only like 4 weeks to go, it takes place May 23rd. Remember, I feel like collapsing after 2 to 3 km right now. Guess somebody's gotta train, especially because one  person said to me that he doesn't think I can make it. Sure, I'm telling myself the same thing. However, I'm not willing to accept anybody to talk to me about things he thinks I cannot accomplish. Nobody is going to slow me down. At least not a friend. 

#2 I've been to a meeting by the Rotaract Club tonight, which is the youth organization by the Rotary Club (you might know that one). Well, however there was speech held about Freemasons tonight. Just besides the fact that I got rid of a lot of prejudices I had because of several books written by Dan Brown, I learned a really true message tonight: By the end of the day you should answer all the questions you have had that day. Never go to bed with an unanswered question in mind. It is harder with problems as they can't be answered that easily. Therefore you should split them up and solve them in pieces. 

Convenient closing words for tonight's post. Good Night, praying for at least a few moments of sleep tonight. 

The Things You Can't See

So I guess the title already indicates a lot. I know a lot of you might believe that it is weird how I can jump from being full of happiness and joy to a person feeling all lonely, desperate and sad. I would have thought this is weird three months ago. But right now, I know better. 

I'm all happy because I'm going through the challenge of TCJF with so many other IBDler and I know that we can do this together, be strong together. It makes me feel belonging to a group of people. I'm not saying that I have no friends, but this is different. Like way different. This are people that go exactly through what I'm going through and they on their side know the same about me. Having an autoimmune disease that is only rarely talked about in public is more than just a disease with symptoms. It's pain. It's medication with major side effects. It's permanent fatigue. It's feeling permanently sick and weak. It's becoming different around others because your life is so much different from theirs. This makes you lonely. Saying that you feel lonely makes your friends think that you don't care any longer whether they are there or not. Even if you do. And you do. You always do. The thing is people cannot know what you are going through until they feel it themselves which I would never want for anybody else. And this is why you feel so damn lonely even when you're surrounded by loving people caring a hell lot for you. 

I spent my evening yesterday with a good friend I haven't seen in a while even though we still live in the same city. Guess, that's the prize of going to university, not seeing your friends from school. It felt so warm at heart to have someone to talk openly to about my disease. It was nice how we can still talk for ages about the most random stuff, some things will never change, some things are still untouched by Horst. A lot of people with IBD say that their disease actually helped them finding true friends on which you can always count. To me, this isn't true, at least not completely. The more people I talk to, the more I realized the people closest to my heart are also those who to me react in a perfect way. Just treating me as a normal person, just being me, Valerie. So I guess I already had a pretty fine taste when it comes to friends. However, other people in my life won't be there that much longer. And actually I'm not too sad about these circumstances as I simply have not enough energy and time for their negative and superficial bullshit. Still, I'd like to say that the girl from yesterday certainly belongs to the first group of people in my life, thank you so much darling. 

Still, she had to leave. And I was all by myself. Feeling lonely. Then another friend wrote something in her blog (http://lucians-bookmark.blogspot.de/2014/04/inflammatory-bowel-disease-ulcerative.html) about me which certainly touched me a lot. In several ways. Ways I cannot yet explain. When I told somebody about my feelings about this post he told me that I shouldn't be touched that much by something laying in the past, something that I'm already over. And with my strength right now, it'll all be alright. I'd be lying if I would say that I didn't want to hear that, especially because this is exactly the title of my blog. However, I had to realized that I might not yet be ready to be told so. Because truth is, I still need time even though I'm trying very hard to feel fine and to only express positive vibes on this blog. But I wanted it to be realistic and reality isn't always as nice as you want it to be. Truth is, I'm not over it, I'm still crying a lot in the nights trying to understand why it has to be me going through this even though I would never want this for anybody else. I know that wallowing in self-pity won't make it any easier or better but I can't fight against it right now. And nobody else can do this for me. So here I am, all alone. 

But I'm a strong person and as strong person I won't close this post with such a thought. So here's what I had yesterday and today (yes, still following the #21TCJF Challenge):

Thursday, 24th March

Breakfast: Leftovers of the banana bread

Lunch: Again Leftovers from the Tuna Salad (that bowl was just way too big)

Dinner: a mild Indian chicken curry & rice & blood orange juice

Exercise: just a short walk w/ my friend

Indian chicken curry & rice

Friday, 25th March

Breakfast: Banana & Apple 

Lunch: Leftovers from the Indian chicken curry

Dinner: (spoiler) I have no idea, I'm having a date! 

Snack: self-made apple-cinnamon muffins 

Exercise: none

self-made apple-cinnamon muffins