Erik (sargonepsilon) wrote,

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It's been a long time

Most of you know I’ve been sick for the last few months. It’s been a grueling experience. Pain, fatigue, and weakness keep me mostly confined to a chair or bed, even a short walk to the bathroom often leaves me eager to rest. I don’t have much of an appetite, and it’s caused me to lose a lot of weight. I’m living with my mother because I need the help, but the worst part is the melancholy that sets in.

I haven’t felt like a real person in a long time. I’m isolated by my illness, and I isolate myself more. I get calls or messages from friends, curious how I’m feeling and wishing well, but I’ve taken to leaving my phone off or not on my person for long lengths of time, so I won’t be around to answer, and I never call back. It’s not that I don’t appreciate them, but there is nothing to say. The conversations are awkward with no agenda, and I have never been particularly comfortable on the phone to begin with. So it gets worse, and they call less, and I feel worse, and they probably do too.

I look at myself in the mirror before I shower and can’t believe what I see. I weigh less than 120lbs now, and it shows. My joints stick out, elbows, knees, shoulders. My ribs are visible from both front and back. My stomach seems monstrous, sticking out of my body like an African child on television. I stare at it frequently, unable to wrap my mind around how out of proportion it seems. I’d be embarrassed to be seen without a shirt.

It follows me out of the bathroom as well. Sleeping is difficult because my knees no longer fit together, and my arms lose circulation if I leave the slightest weight on them. My clothes are all too big, and I rarely change them. Originally it was a matter of logistics, they were at my
house and I was rarely there, but now I simply don’t care. There is no point.

Last Friday, after a hospital visit where all the staff seemed surprised that I looked sick, my disease was finally diagnosed as Crohn’s disease. I find it hard to make myself research it thoroughly, but from what I’ve gathered it is a poorly understood disorder that affects the GI track. No one is sure what causes it, especially in cases like mine where there is no family history, and there is no cure. The short of it is that I have over a dozen ulcers, which cause the pain, and prevent me from digesting important vitamins, leaving me anemic and tired.

The bright side is that it’s very treatable, and not life threatening. I’m now on an aggressive regimen of pills that are supposed to have me feeling better quickly. One each of iron, b12, and a multivitamin each day, along with three steroid pills and eight large blue pills whose exact function I don’t understand. I’m also scheduled to get medicine through infusion next week, though I’m not sure if that means an injection or an IV, and I don’t know how many doses I will need. The final part of the treatment is a very restrictive diet that prevents me from eating and drinking almost everything I would regularly keep in my house.

I had been eager for a diagnosis for a long time, assuming that once we finally knew what it was I had, there would be medicine and I would get better, but it turned out to be the low point of what has been a tough few months. I fought tears several times on Friday. I wanted to give up. I don’t want to be managing a sickness for my whole life. I don’t want to take 14 pills every day. I don’t want to have to find all new foods and drinks. I don’t want to have to analyze ingredients. I don’t want to deal with it all. I don’t want to be that person.

But it fades to acceptance quickly. People live with worse, harder to manage, and more dangerous illnesses. I’ll learn to deal with it. I changed my clothes yesterday, and I’m starting to get my appetite back. I got a get well card from friends and tell myself I should call them to say thank you, but I know even as I think, that I won’t.
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