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
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