Well better might be a strong word. I mean I am WAAAAAY better than I was a couple weeks ago that’s for sure, but I’m still struggling day to day. It’s just easier to suck up now.
But there are some downfalls to starting to feel like you’re that much closer to feeling “normal” again. The biggest one being that you now had a taste of what it’s like to live a functioning day to day life, so when shit does hit the fan it seems a bit harder to get over.
For example last week I was feeling good! I was able to participate in my works team building activity (which was Laser Tag, and I did work up quite a sweat) I got the promotion at my job, I was actually eating a normal amount of food again, I successfully went out to a restaurant, and people actually said I looked great!
Then near the weekend rolled around and so did my bowels. We went out to my boyfriend’s parent’s lake lot and I could not function. I was so tired, my tummy felt so bubbly and bloated, and I just kept fighting the feeling of nausea. And when I say tired I mean it. I woke up at 11 am, napped from 2-6pm, and then proceeded to go to bed at 11pm sleeping like the dead the entire night. I couldn’t believe it! Also camping and having bowel problems has proven to be quite the challenge. It’s a lot harder to want to leave the camp site because you’re worried you might not make it to the nearest washroom and having a poop attack in an outhouse doesn’t exactly scream “fun times” to me. I felt so terrible because I’m sure his parents had a lot more planned for us as it was my first time up there, but I just couldn’t commit. And I feel worse, because they were so understanding. Curse people who are so sweet, it makes my guilt rise!
So when I got home I died on the comfort of my own toilet. But I found myself feeling really sad, and I hadn’t felt this sad in a while. I was so sure we were finally on the mend but here I was, again pooping 15 plus times a day, feeling a loss of control again with my bowels, and again feeling nauseous and completely drained from the disease. Even at work I can’t seem to stop going and were back at that stage where food just seems to be a trigger, regardless of what I eat.
Again, in the grand scheme of things I am getting better. I may be having frequent poop attacks, but there’s no blood, they’re mostly solid, and it’s not a crazy amount. Sometimes it’s just a false alarm. But I just want to be better, now. Is that too much to ask for?
Another downside of starting to feel better is you start to trust your bowels more and this can seriously back fire. Like I said, I’ve been having a lot of false alarms or just really bad gas. So most times I won’t actually run to the washroom because sometimes I think I can hold it (which lately I could) or it’s just gas. Well this weekend I almost didn’t make it to the washroom. I mean technically I “leaked” a little but I was so sure I could hold it. In 5 seconds that thought quickly changed. So needless to say, my bowels and I are back to being on a certain level of distrust right now.
Trying to get into remission is such a roller coaster physically and emotionally. One moment you think you’re getting there and then next minute your body reminds you that you are in fact still sick. I feel like I’ve come really far mentally. I’m starting to really feel a lot stronger, but then I think of the nights where I can’t muster anything out of my body so I just recluse to my bedroom by 8pm and watch Law & Order SVU until I fall asleep. It’s those moments that I start to doubt that I really am getting stronger and perhaps I’m just faking it to get by. It wouldn’t be the first time.
Faking it kind of becomes a normal with an invisible illness because it’s sometimes it’s just easier for people to just assume you’re getting better. I can’t tell you how many times I have sat with friends or family, squirming in discomfort but smiling and chatting away regardless, trying to sit with my cheek clenched. It’s a lot easier to pretend you’re feeling okay when you’re sitting versus when you’re standing FYI. The amount of times I have convinced myself that I can do this and could get through an outing when I was probably pushing myself past the limit (like when I thought going on a hike in the mountains would be a great idea during a really bad joint flare up that resulted in me crying not even halfway up because the pain became too much). The amount of times I sit at work, just wishing to crawl back into my bed, but instead sit among my colleagues and chat with my parents while running programs that make me so out of breath.
But I don’t stop because life goes on, with or without me, and I don’t want to fall so far behind that I end up giving up because it feels too overwhelming. But I know I have to draw a line somewhere, and with my Masters program starting tomorrow, figuring out that line may come faster than I am ready for.
But I’ll end this post on a more positive note! At the end of August I will be going to Mexico for the first time with my lovely boyfriend. It’s our anniversary celebration/ a hopeful hurrah to me getting better. I’m really hoping Humira has really kicked in by then. I’m doing injections weekly! I can’t imagine having this much of a drug in my system and it not having some sort of effect on my bowels….. but you never know with my body, which is why we bought a cancellation insurance just in case. Because it would be my luck that on the day of the trip my body decided that we were not going. Fingers crossed!