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

Being Challenged

So yesterday, I started the 21 Day IBD Challenge by TCJF (The Crohn's Journey Foundation) and so far I feel pretty amazing. Not necessarily only my body but also my soul really like this challenge because it gives me an aim right now, a finish line that I've been looking for ever since my diagnosis (because where is your finish line going to be when there is no cure, eh?). I took a lot more time for myself each day in order to follow the diet and exercise plan of the challenge. It makes me more relaxed and less stressed even though I'm back to University and hell, it ain't no fun at all because I have to take way too many classes. In addition, even though a lot of activities by foundations as TCJF only take place in America, I feel more part of the group of IBDlers around the world. And, which by the way makes me really really happy, I found out Horst doesn't necessarily have to be a threat to my love for food. This is why I'm planning on a new section in my blog about food that I love and which is good to my belly, what could be more suitable for a blog by a person like me? 

So that's what the challenge is about: 

NO GLUTEN, NO DAIRY, NO SUGAR

EXERCISE THREE TIMES A WEEK FOR AT LEAST 20 MINUTES

Did sound tough in the beginning, but well it isn't actually. Here's what I ate/did so far:

Tuesday, 22nd April

 Breakfast: Self made gluten-free banana bread 

Lunch: gluten-free noodles with garlic sauce & few slices of Chicken

Dinner: Bowl of fresh Tuna Salad 

Exercise: 2 hour soccer practice 

Tuna Salad 

Wednesday, 23rd April

Breakfast: Slices of a fresh orange

Lunch: - none - (wasn't hungry at all due to late breakfast)

Dinner: Leftovers of the Tuna Salad & Blueberry-Banana-Shake

Exercise: 40 Minutes Bike Ride (I admit it - only to get to University and back)

Blueberry-Banana-Shake 

So far I'm pretty proud of myself and can only recommend this to everyone - ill or not. Give your body from time to time the chance to recover from all the shit you give to him everyday, he will be very thankful and peaceful in return. 

Happy Flaring

I wish I could continue my positive vibes from the last post but guess what, I can't. 

Hell yeah - I'm trying. 

Just like everybody else I get really excited coming close to any festivity because of the enormous amount of food, family time oh and no university! And until yesterday, it has been simply amazing. I had a friend from Austria visiting and staying with me last week and we spent a lot of time together sightseeing through Hamburg. I stayed there to have a good time with friends at the Easter bonfire right at the beach, which i definitely had! Unfortunately an autoimmune disease comes with a rather weak immune system which I tend to suppress. However, my body didn't which is why I felt terribly sick since yesterday morning. Yesterday evening then was the night! Easter Barbecue with the family, beautiful weather, and still me being sick. SUCKS! Well and then me being really silly. Eating too much food, food I shouldn't be eating anyway. So coming back to my flat share I had a terrible night of only a tiny amount of sleep, headaches, throat hurting.. (just general cold things, however a cold is nothing so easy and simple to handle with an immune system like mine) and FLARES. I. Hate. It. And as if this wasn't bad enough already, I had something one might call a date today.. I must have looked terrible because this is what i felt like. Wondering if this guy ever will be wanting to see me again.. Just being honest, this is what I hate most about this disease, it brings you down when you're expecting it the least, when it is most important for you to be healthy. Well and it kind of ruined my Easter. Everybody who knows me, knows me as a person with an unconditional love for food. UC really takes a hard hit on that love. Fortunately I came a along this challenge (and if I'm able to work this out, it'd be pretty sweet) https://thecrohnsjourneyfoundation.org/21-day-ibd-challenge/ , so Horst (yes, i named my UC Horst, couldn't think of an uglier name) be ready for that! Just started with a huge amount of tea my best friend gave me when I visited her. And tomorrow I'll be out for a run, at least that's my plan when my body will agree on doing so. 

Always remember to do something for yourself each day.

Care for yourself when cure is not possible.

This should definitely be the life motto of everyone. Not only when cure is not possible. You should always remember to care for yourself, your soul and your body. Right now, caring for myself has a major influence on my happiness, but I'm positive that it would also be good for me if I wasn't sick. At first, I had no clue how to do good for myself  but then I came across this list http://greatist.com/happiness/ways-to-practice-self-care.. sounds way too easy, doesn't it? Well somehow it works. This is why I decided to go for a spontaneous trip this weekend, just to follow #25 of that list. I left for a sunny weekend at the seaside close to the northernmost tip of Germany. What should I say? Besides the fact that I was already giving up on my New Year's resolution to be more spontaneous, which is now fulfilled, it was such a good opportunity to just enjoy silence in order to recollect what truly matters in life. 

Be happy. It's good for your health. Promise. 

The People Who Matter

I just have spent a whole week back with my best friend and her family at someplace near Frankfurt where I used to live for a long time. And this was probably the best thing I could have ever done as I feel so much more recovered now and by saying that I have the best "best friend" on earth, I mean it. I believe it is really hard for friends to react to a bad medical conditions of a friend, or at least in a way the person wants to be treated even though he or she doesn't know it him-/herself. This is the point where I realized she somehow must know me better than I do, and I'm now more than ever very thankful to have her in my life as well as her family. For the first time since my diagnosis (I know it has only has been like one and a half month, still feels like forever) my UC didn't determine how I live, but I determined how I want to live with it. Which obviously was a big step forward for me as I couldn't imagine how I could every possibly be living a normal life. But I do. And she somehow showed me how just by having me with her in her normal life, no time for hiding under the sheets or not going out in the evening which I have been doing a lot lately. So let me tell you something, you are by far one of the best things that has ever happened to me in my life (Yes, I actually believe I may say it that way because we have been friends for 15 years and well even though I'm only 18 right now I believe that 15 years will always be a period worth remembering in your life, even when you're 90, won't it eh?). 

I also feel like I am now more capable to understand the way other friends and especially my family are trying to help me. They simply make me aware of the fact that life goes on, no matter what. This never seemed like a big help to me as I felt completely excluded from normal life in the beginning or at least didn't feel like I wanted to be in it any longer. I had so much fun the last week and right now I could slap myself in the face for my thoughts in the beginning. I don't simply want to survive (which I will anyway being a dutifully person - taking my medicines every day), but to live. And I am so thankful for the people being there, right by my side even though I wasn't always able to see that. 

You guys are the people who matter xx