How to... Fight a Flare?

Ok. So I know a lot of people from the IBD family will disagree with this but I believe you can fight a flare when it is upcoming or in a really early and not so severe state with a lot of things other than medication. Here are some of the things I already discovered to be very helpful, and other things that I hope will work (I'm going to try them anyway, because what do I have to lose, eh?) and tell you about the (hopeful) positive effect they have: 

1) Diet. Well this should certainly not be new to anyone from the IBD family as we even have food that makes us really sick when we are in remission. And it gets worse during a flare. Like a hell worse. If you have been reading this blog for a little while you might know that I didn't manage the 21 Day TCJF Challenge which included no dairy, no gluten and no sugar for 21 days. Well, I'm trying something right now which is pretty close to this. Since Sunday, I'm eating lactose-free and gluten-free. In addition, I try to have it as fluid or with as many fluids as possible, the more fluid it is the less work for my gut, at least that's what I am thinking. And I already felt a difference as I didn't feel as upset after having food as I had before. Eating now takes less energy from me which makes me have more spoons for other things! 

Amaranth-Porridge with Pomegranate, Banana and Flax

Lactose-free Vanilla Yoghurt with Corn Cereals
and homegrown Wood Strawberries 

2.) Relax. Sometimes life rushes by. Well not sometimes, actually that's most of the time. You don't have to make everybody around you stop living but you definitely don't have to pressure yourself into coping with their pace. This is ridiculous and exhausting and most of the time not even worth it -  so take your time, take time out from daily life from time to time and don't go through life, grow through life. You are so strong, even when you're doing everything at snail pace. This brings me to the next point...

3.) Be kind to yourself. Sounds easier than it is, I know. But stressing yourself brings you nowhere. As I said, take a time-out. Treat yourself not only with enough sleep and a nap (you won't have enough of that anyway, will you #spoonieproblems) but with little somethings. Today this was for me to have a bath. It might also be reading a book for an hour even though you have tons of other stuff you have to finish. Do whatever makes you happy and don't care for the others, your journey is not for them, it's only for you. 

4). Still. You should try and be kind to everybody. And I know that this is also hard, but whenever you can and have the energy (and sometimes the balls) just smile and try not to be too depressed around others. It is really hard for friends to cope with us I guess and it is even harder for them when we're always grumpy and simply not a nice person because we are in permanent pain. Still we also should remember to be kind to everybody we meet, as he or she might as well have a medical condition or other problems. I believe everybody does, people are just really good at hiding this. You wanna keep the friends you have (because this disease probably already made you figure out who of them are the right ones) and therefore you should try and be at least sometimes nice to them. Going through a flare is probably so much harder without them, even if they can't physically relieve the symptoms.

5.) Always remember this is going to end one day and that you will be fine whatever happens. Keep your head up and don't let this define you, let it rather to change you for the better, I'm sure you are a strong fighting person, sick or not. Sometimes you might feel all alone, on your own which is mostly when depression hits in very hard. But also remember you are not alone, there are always people who care a lot for you and who love you very much. 

Referring to #2 of that list, I'll Relax. Now. Immediately. I'll be good to myself and have enough sleep this night, at least I'm trying my best, my body needs to do the rest. Goodnight IBD family and all the rest of you xx 

How to Create that Awkward Silence

Ugh. I know. I'm like the worst blogger ever. Like ever ever. I'm so sorry. But guess what - there are several reasons for me being "currently not available" for like a month. 

It actually all started with - good news! - my GI telling me I was back in remission on May 5th. This really put me in a state of confusion in the beginning as I still was in pain and suffered from insomnia, fatigue and nausea. But well - the blood was gone and my test results were ok - and so was I with my GIs assertion. What then came was rather an illusion of a cure and going back to the life I used live than  reality. The thing is life ain't the way you want it to be most of the time. So while my brain put the state of remission equal to the one of a cure, my body didn't feel that way, and basically, pain, insomnia and fatigue were relieved but however just wouldn't go away. And this was actually a tough one for me, because on one hand I couldn't find a way to relate to other people with IBD any longer as I felt sorry for them not being in remission while I was (always remember there are people who have never been in remission). On the other hand, it hit me really hard that I will never get back the life I used to have. Not in remission, and for sure not in a flare. Never. And this is still so hard for me to handle, even thinking of it right now makes me wanna cry. The thing is crying won't make it any better, crying will be bring me nowhere. So I should definitely safe the energy for that. No spoons to be wasted! You might have realized I'm writing about these feelings in the past term. Ya. See the reason is my remission has only lasted for three weeks. But let me come back to this later. 

I want to tell you about the good things that happened to me while I was in remission or what I did accomplish during this time (you might also want to follow my progress on my 20 before 20 list, well I'm going to have a separate post about progress on that). First of all, I turned 19 and had a blast of a party! It was so good, like soo good. Everybody was having fun and even though I had a sudden fit of weeping because I heard about a member of the IBD family passing away the night before, I felt good and lucky to have such amazing friends. They were there for me that night even though they didn't know why I was all of the sudden fighting with tears. And one of them said something which I believe is very important in the future relationships between me and my friends as he said that it was important for him and the others to see this in order to get at least a fraction of what I'm really feeling, not only the strong fighting me in public but the real fighting me, sometimes in need of help by friends. And he was right, I actually needed them to know that this is not all about butterflies, toilettes and some antibiotics. It is a disease that kills people. People I know. 

I managed my 9k run for the MS charity which made me really really proud. And thankful for being able to do so. Just to stay real, I did pay a lot for the training in advance and the race itself. I needed to rest a lot, some days again not being able to get up even though I was in remission. The night of the race a friend of mine also had his birthday party. I went. But I wasn't able to stay as long as I wanted as the pain became more intense again, making it hard to walk or even stand. A friend of mine brought me home. I honestly don't know what I would have done without him, I didn't feel like I would have made it alone and no one else was ready to leave yet. This is the point where that invisible line between them and me became obvious again, I guess. This friend is actually new but still a big aid as I feel like I can talk to him about some things others will not understand as he underwent comparable  serious medical conditions. I am really thankful that he turned up this last month in my life. Sometimes somebody to talk to in person is just all you need. 

So this is the next good thing: him. You know how it is sometimes hard to see the good things in life when it seems so hard and you feel like you can hardly endure one more day? It is so depressing and even though I am trying to be positive about everything, oh you know this isn't just as easy as it sounds. Depression and anxiety, widely loved side effects of IBD. And you really can't talk to people about this. Again, depressing. Just talking to him made everything seem possible again. Sounds cheesy, I know but I don't mean to be cheesy, it's just the truth. And he said something really important as well which made more conscious about eventual future relationships. Remember that guy I met and would go out with for a couple of times? I told him about my UC. And he left. We haven't had any contact since. And it was depressing. It increased my doubts about the possibility to find a partner who is willing to cope with this, sometimes I believe I will need this person more than he will need me. This horrifies me. And then this friend brought something very important up: Maybe it was my UC that made him run away in the first place but that guy was a dork anyway. If it wasn't for Horst he would have left me later anyway for another reason. So good thing things haven't gotten too intense by then. Still it hurt. But this is the message I guess. All of us deserve someone that loves us as much as we love him or her and who cares about us as much as we do for them. This isn't changed by any circumstance, especially not by a disease like Horst. If only that friend knew. 

However Horst is done with taking his siesta and back to the game. I wasn't really able to see my GI about this so far, but I got new medication from his office. Bleedings are back, nausea is really bad (I really start to dislike food at this point as I keep throwing it up) aaand the pain. Well, I'm gonna go and get my heating pad. Let's see where this will take us. (oh and I promise to not let this silence on the airwaves occur another time). I'll keep you updated xx 

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