I've been up since 2:30 in a decent amount of pain. Today is day 6 of throwing up blood due to ulcers in my stomach and intestines from all of the medications I have to be on to keep me alive. Explaining the stress that causes, the pain, the general overall uncertainty in anything in my life; it's hard. It's hard to explain that because I am sick EVERYTHING else seems more difficult. It was 2:30AM when I woke up and in between the vomiting and the severe pain flares I went through my previous FaceBook posts. I do that sometimes to read about what happened to me in December as a processing mechanism, but this morning I just kept going and I realized how long I have been dealing with this. I try my best to take it one day at a time because it seems impossible to accomplish anything with the realization that chronic means forever; but I have been battling a "flare" since 2014. I have been hospitalized at least once every other month for two years. That's not normal, that's harder to get through than it seems.
Yes, being sick itself is hard. Being sick ALL THE TIME is hard. I remember a running joke I had for myself whenever anyone would say, "You're always sick!" I would respond, "Oh my gosh, I am? I didn't notice!" ... because high school Erin was hilarious; but really that's how it is and how it has been my whole life. I am always sick. That changes so many things for me, I am insecure in so many ways because of it. That changes how I approach people, serious topics, work, and life. Not only do I push myself to go above and beyond at work because I worry if I don't make myself invaluable I will lose my job, I don't put my best foot forward with new people because I don't want to get invested for them to realize how sick I am and leave, I constantly apologize to my friends for literally everything, and I downplay any type of symptom I have or difficult issue with jokes and sarcasm so that people don't get scared off ... It takes over.
Luckily I am getting a lot better at the adjustments that have to be made when things like this happen. If I hit a snag or something happens in the worst possible way (how I continually think it will), I have a great support system in place and some of the best friends I could ask for that are there for me no matter what. The reason I keep posting about what is going on is that I have had an overwhelmingly positive response to my posts and my blogs; from people who have chronic illnesses that I didn't know about and from those in my Spoonie community. It's one of the better ways I have found to adapt to this huge life adjustment of being constantly fighting - putting it out there so others can see I am trying my hardest and those that need it can see they are not alone. It helps me process to post things every day, including pictures and selfies, just because it humanizes the issue (even to me) and puts a realness out there that I have a hard time grasping when I just want to go back to being a healthy and normal Erin.
So this current flare - on the heels of a WHOLE MONTH of being well and back at work - it's a little bit emotionally devastating and super physically draining. But one day at a time I can make it through this one. I can and I will; I was out for a week, had an emergency surgery, had 6 IVs so far this week, added three medications to my already plentiful and never ending pill case, haven't had food stay down in 3 days without a little bit of blood vomit, and I am getting through it. I did everything they asked me to do - we actually got an answer to why it was happening this time (though the medications may or may not help at this point), and I can make it. I can get through one more day. Every morning that I wake up is an easier day to get through than that one time I didn't, so I am going to push my way through it to get to a better one.