Wednesday, October 9, 2013

Dealing with illness 101: don't feel bad for yourself


As usual, this is somewhat of an overdue post. Words have not been coming easily as of late, but I know others read this. I certainly wish I had someone to tell me I wasn't crazy before I ever had any idea Cushing's Syndrome  exists. It doesn't end there, though. I remember how much better my endocrinologist said I was going to feel after surgery. Even now my doctors doubt the correlation of my illnesses, but that may be because there isn't enough research to back it up and less about them believing me. I'm having a hard time not feeling sorry for myself lately. Not living in the past. My endo was right about me feeling better in a way; I no longer feel like a bumbling idiot who can't control her own emotions or remember anything. I look close to the way I used to, although some people don't recognize me. You may be wondering why that's a bad thing. Well, I still feel as if nobody in Eau Claire will ever know the real me. I find myself missing the friends that knew me before I was sick or, at least, when I was less sick. I had thought I was making some headway in explaining myself, but how can I expect others to understand something that's so intricate? I moved here looking for a fresh start. I don't regret it. It's just that it's a tad bittersweet after everything that's happened. It's clear that a lot of people don't believe I've got myself under control now (mentally, mind you). And I *keep* getting sick physically. The full effects may never go away. The best they can do is go dormant. I think sometimes my doctors shrug because I'm so young so it's not a big deal, right? It's because I'm so young that I feel so frustrated and they really don't see me that often. I notice the rapid changes I go through each and every day. I've gotten worried about how much weight I've lost because I know I'm not eating right. It's not that simple for me. Ever since my stomach has come back with a vengeance, I don't know what to eat. Sometimes I don't want to if it's just going to make me sick(er). I feel the hunger either way, that's for sure. I try to keep up with others my age. I run all over the place and inevitably crash. Just this weekend I went to a musical after making myself take a nap. I took a sleeping pill which I hate doing because I almost fell asleep halfway through the show later on. I drank an espresso mix to counteract it. I made it through the night and even had a bounce in my step. I decided to go out and have a few light drinks. The next day, I felt so sick that I threw up my stomach medications. You could say I was throwing too many substances at myself but I need to sleep. I haven't been. I fall asleep for maybe 4 hours. I slept better last night- probably because it finally caught up to me. There are other times when the same occurred without me doing anything more than walking too far. I use my bike for just about everything now. The longer the weather holds out, the better. Anyway, this is turning into a bunch of rambling. I'm just tired of not being able to be more active. I look at others and feel jealous. It's so petty of me, but I can't help it. My muscles feel just as weak no matter how much I work them. They also hurt. I'm sure everybody has heard that complaint by now. I don't even care that they hurt. They just stop me from doing more. I've had this contention for some time with my doctors about using something to "breakthrough" the pain as they put it. Why can't I have muscle relaxants for a bad day? Why won't someone help me work through this? It's not like I'm not trying to improve them on my own. I see an imaginary brick wall I can't quite climb over, however. Some of these feelings I'm expressing are something I need re-work through with myself, but as for some of my sentiments towards acquaintances who've seen me at my worst, I wish they'd give me a chance to be at my best. I am not perfect and often tired. I'm also not stupid. I'm fully aware of how ridiculous and emotional I used to be. Sometimes when I'm not careful or getting sick, I will become a little off. I mean, it'd be nice if I didn't keep developing new problems I can't forsee. I didn't mention the uti I had in July or the other random infection I had in the last month. When I know what I'm susceptible to, I can work at preventing it from happening again. To be fair, my body loves throwing curveballs. Just look at my medical history. It's fairly extensive. Here's a link about The Vagus Nerve. I didn't have any decent information on it before... it's the nerve that is probably the cause of most of my problems stemming from Cushing's, of course.

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