Crummiest Anniversary Ever
Today is my "One Year Hospital-Free" anniversary. As anniversaries go, it's kind of lamesauce (which is a fun word, btw). Don't get me wrong, I'm thrilled to pieces I can celebrate it, but getting excited that I've spent a whole 365 days not in the hospital is really kind of depressing. It's like celebrating Arbor Day and Flag Day; sure, there's a reason why they became holidays, but that doesn't stop them from being lamesauce holidays. (If you happen to be a fan of one of those holidays, that's fine. I totally respect you and your reasons, don't feel the need to share them. Because it won't stop them from being lamesauce. And now I am done using lamesauce in this post.)
Lamesauce. Ha! Fooled you.
Anyway, I am so very, very happy that I haven't needed hospitalization in a year, that my 'condition' is being 'managed.' And I'm really lucky when it comes to chronic conditions. Unlike many people I know, I am no longer in pain all the time. Also, medical science and random people I talk to all accept that I am sick, that this sickness is not somehow my fault and I'm not 'doing it to myself,' and that I won't get better simply by trying hard or 'working at it.' My illness is a 'real' illness and I'm not seen as having failed as a person because I am sick. For all that ulcerative colitis is a fairly invisible disease (the sicker I got, the more compliments I got on my appearance because I had lost so much weight), people still understood and respected the fact that I was ill. So many, many people I know go don't get that understanding and respect and that frustrates and bothers me. Just because their diseases are invisible or non-physical in origin doesn't mean they are suffering any less than I did.
I'm not trying to call anyone out in my LJ for not being understanding and respectful enough or anything like that. I've just been thinking about a lot of things as this anniversary drew closer. And while I do a lot of bitching about being sick and all, I know I am incredibly lucky to be able to be pain- and symptom-free and to have my pain and illness given the gravity it deserves. And I wanted to take a minute to recognize everyone for whom those two statements are not true. It isn't fair and life isn't fair, but that doesn't mean we have to be quiet about the unfairness. And while constant pain is one of those Things That You Just Have To Deal With, isn't it time we were past the idea that people are responsible for their own illness or could fix it themselves just by 'wanting' to be healthy? I think so.
If I could make things happen by just 'wanting' it bad enough, I'd have a fuckin' pony by now. Some things you cannot fix alone, even with the power of positive thinking. I couldn't 'want' my colitis to go away, I couldn't just spontaneously get better by 'working at it.' I even tried 'not being sick.' Guess what? It didn't work. And since you are all very smart people (I know, because you're reading my LJ) I'm assuming you can all see where I'm going with this. Go there. Think about it. Don't worry, the rest of the post will wait.
See? Waiting.
Another thing I've been thinking about is how much energy I've been subconsciously devoting to waiting to get sick again. I'm healthier than I've been since this whole thing started, and yet I keep expecting the other shoe to drop. This summer, when the breakthrough started and I was angry and sad and frustrated, there was a bit of me that was just relieved. Because at least the anticipation was over. After the bleeding stopped, the anticipation started again. I've been telling myself that it's stupid, that my treatments are working and there's no reason for them to stop working in the foreseeable future, and even if they do, I should just enjoy being healthy right up until I'm not anymore, but it's hard for me to be convincing.
It's amazing how much can change in a scant year. 2008 changed me on a fundamental level and I still don't fully understand how, yet.
I think part of the problem is that even though I'm 'healthy,' it's a kind of healthy that comes with strings. I associate health with being free to do what you please (within obvious limits, duh) without fear of reprisal. I don't have that freedom and I'm always being reminded of that. Not being able to donate blood or bone marrow is one reminder. Eating and drinking is another. I keep forgetting that I can't share (I know, weird, huh?), so I'll offer people a sip or a bite and, because my friends are amazing and wonderful, they'll either decline right away, or will take away the straw or the spoon and get me a new one so I don't get their germs.
And I appreciate that, I really, really do. And want y'all to keep doing it. But it's still a reminder than my healthy has limitations that other people's don't. I am not really healthy; I'm still sick, I'm just being 'managed' and 'controlled.' (Guess how I feel about those terms being applied to me, even if it is in regards to my illness). From the outside, there isn't much of a difference between being healthy and having my colitis properly managed, but from the inside, it's huge. And I think that's where my anxiety about getting sick again comes in--my illness isn't dead, it's only sleeping and I'm afraid of what will happen when it wakes up. Because in my head, it isn't an 'if,' it's a 'when.'
I don't want to think like that. And I'm trying really hard not to. I don't want it to be this dark spectre that follows me around. But right now it is.
Here's hoping that my second anniversary in 2010 sees me free of that, too.
Happy anniversary to me, even if it is kinda lamesauce (ha!).
(PS The icon is for you, ddrpolaris)
PPS I'm trying to figure out how to combine my anniversary with Guy Fawkes Day. I'm thinking I start blowing shit up until the government starts offering DECENT FUCKING HEALTHCARE OPTIONS.
Lamesauce. Ha! Fooled you.
Anyway, I am so very, very happy that I haven't needed hospitalization in a year, that my 'condition' is being 'managed.' And I'm really lucky when it comes to chronic conditions. Unlike many people I know, I am no longer in pain all the time. Also, medical science and random people I talk to all accept that I am sick, that this sickness is not somehow my fault and I'm not 'doing it to myself,' and that I won't get better simply by trying hard or 'working at it.' My illness is a 'real' illness and I'm not seen as having failed as a person because I am sick. For all that ulcerative colitis is a fairly invisible disease (the sicker I got, the more compliments I got on my appearance because I had lost so much weight), people still understood and respected the fact that I was ill. So many, many people I know go don't get that understanding and respect and that frustrates and bothers me. Just because their diseases are invisible or non-physical in origin doesn't mean they are suffering any less than I did.
I'm not trying to call anyone out in my LJ for not being understanding and respectful enough or anything like that. I've just been thinking about a lot of things as this anniversary drew closer. And while I do a lot of bitching about being sick and all, I know I am incredibly lucky to be able to be pain- and symptom-free and to have my pain and illness given the gravity it deserves. And I wanted to take a minute to recognize everyone for whom those two statements are not true. It isn't fair and life isn't fair, but that doesn't mean we have to be quiet about the unfairness. And while constant pain is one of those Things That You Just Have To Deal With, isn't it time we were past the idea that people are responsible for their own illness or could fix it themselves just by 'wanting' to be healthy? I think so.
If I could make things happen by just 'wanting' it bad enough, I'd have a fuckin' pony by now. Some things you cannot fix alone, even with the power of positive thinking. I couldn't 'want' my colitis to go away, I couldn't just spontaneously get better by 'working at it.' I even tried 'not being sick.' Guess what? It didn't work. And since you are all very smart people (I know, because you're reading my LJ) I'm assuming you can all see where I'm going with this. Go there. Think about it. Don't worry, the rest of the post will wait.
See? Waiting.
Another thing I've been thinking about is how much energy I've been subconsciously devoting to waiting to get sick again. I'm healthier than I've been since this whole thing started, and yet I keep expecting the other shoe to drop. This summer, when the breakthrough started and I was angry and sad and frustrated, there was a bit of me that was just relieved. Because at least the anticipation was over. After the bleeding stopped, the anticipation started again. I've been telling myself that it's stupid, that my treatments are working and there's no reason for them to stop working in the foreseeable future, and even if they do, I should just enjoy being healthy right up until I'm not anymore, but it's hard for me to be convincing.
It's amazing how much can change in a scant year. 2008 changed me on a fundamental level and I still don't fully understand how, yet.
I think part of the problem is that even though I'm 'healthy,' it's a kind of healthy that comes with strings. I associate health with being free to do what you please (within obvious limits, duh) without fear of reprisal. I don't have that freedom and I'm always being reminded of that. Not being able to donate blood or bone marrow is one reminder. Eating and drinking is another. I keep forgetting that I can't share (I know, weird, huh?), so I'll offer people a sip or a bite and, because my friends are amazing and wonderful, they'll either decline right away, or will take away the straw or the spoon and get me a new one so I don't get their germs.
And I appreciate that, I really, really do. And want y'all to keep doing it. But it's still a reminder than my healthy has limitations that other people's don't. I am not really healthy; I'm still sick, I'm just being 'managed' and 'controlled.' (Guess how I feel about those terms being applied to me, even if it is in regards to my illness). From the outside, there isn't much of a difference between being healthy and having my colitis properly managed, but from the inside, it's huge. And I think that's where my anxiety about getting sick again comes in--my illness isn't dead, it's only sleeping and I'm afraid of what will happen when it wakes up. Because in my head, it isn't an 'if,' it's a 'when.'
I don't want to think like that. And I'm trying really hard not to. I don't want it to be this dark spectre that follows me around. But right now it is.
Here's hoping that my second anniversary in 2010 sees me free of that, too.
Happy anniversary to me, even if it is kinda lamesauce (ha!).
(PS The icon is for you, ddrpolaris)
PPS I'm trying to figure out how to combine my anniversary with Guy Fawkes Day. I'm thinking I start blowing shit up until the government starts offering DECENT FUCKING HEALTHCARE OPTIONS.