May 14, 2010

Mortality Sucks

In the past few months, I've received a number of comments on blog posts, Facebook statuses, and the like, along these lines:  "Wow, you do a lot! I don't know how you have the energy to keep up with everything!"
And the truly well-intentioned add:  "You need to be careful / slow down / take it easy before you burn out! You know your body can't handle that."

Not to sound ungrateful, but I think all you women out there who've taken such a 'knowing Sjogie who's been there, done that' tone have jinxed me. Thanks a lot!

But in all seriousness, I know what you were trying to tell me, and it's nothing I wouldn't tell someone else. You're right, as I'm sure you've known the whole time. I should have listened; my very logical, cognitively functioning side knew even the best medical plateau couldn't last forever. Unfortunately my stubborn, over-achieving, head-in-the-clouds side is WAY stronger. It's a shame my body doesn't have the strength to match my foolish will.

I guess I'm depressed. All these stories about women who have had to cut back hours, change to a less intense job to pay the bills, or stop working altogether have been distant in some ways. Yes, of course they're real and legitimate, that was never a question. And these stories are just the kind of facts I try to share as part of Invisible Illness Awareness efforts. But they were sad fates experienced by other "sicker" people, and usually those a few decades my senior, too. Generally people who had already had their shots in their chosen industry, and who must now cope with the premature end to those plans. Other than fellow blogger Jazzcat, I really don't know someone in a similar position in their life, where the realities of our conditions just can't supersede other parts of our lives, no matter how much they "should".

I'm not even a full year into my career. And, I got a late start to begin with (another gift of autoimmune diseases - a 5th year of college loans to compensate for the years where I couldn't carry 5-course semesters - means that I'm older than many of my superiors at work). I figured in 10 years' time I'd have to face these issues, and that within 5 years I should start planning for them if I were smart, but I didn't expect them to slap me in the face so fast. Even my doctor was looking forward to this stage in my life because she understood I wasn't going to slow down in college, but now she delivered her evaluation that I've backslid.
It's very true, I can see and feel that my body isn't as stable as it had been for years. Gone are my days of even having the option to push myself past a safe point knowing that I had a reserve and would be fine. Instead, I'm slowly but steadily drifting back toward the days of impairing stiffness, 2-3+ doses of Ibuprofen, and intrusive fatigue. I'm just barely getting through each day at work, and these aren't even long days or high-pressure assignments. I thought if I took it easy after busy season I'd be back to normal soon, but it's now 7 weeks later and I'm even worse!

I'm so depressed. I'm too drained mentally and physically to work on my pet projects (UII and my youth group). Any cleaning projects around my house are a pipe dream, and my attempts to go through old clothes to get rid of have become a game of musical chairs (the clothes get sorted into piles on my bed only to return to a jumbled heap on the floor when I need to collapse). I'm getting more forgetful again, and seem moody because I easily tear up in frustration and from feeling overwhelmed. And please, don't ask me to make a decision, I simply couldn't handle that now....

Wasn't I the one touting the return of stability on an investment in abiding by personal limits? Didn't I have things so under control that I could almost pretend remission? I know I'm being hypocritical - I always tell others to keep pushing until they find the right doctors and maintenance plan - but I just can't stand the idea of needing to redo my own plan. I don't want to go to the opthamologist next week (I will, but I don't want to), and I've been putting off the dentist for months, even though I know that means I'll have that much more damage to catch back up on when I finally go. I'm on enough meds as it is, and unless they come through with Julia's miracle cure-all, I don't relish the idea of playing with any more.

I don't like this place. I'm angry and resentful of having to return. I wanted to close this door and pretend I would never have to come back. I'm scared of the future (including that which is much closer than I anticipated), and angry about the present. I know I promised to keep this blog upbeat, but sometimes even I can't put on my hope mask for a while. I know you've been there before, too, but I still hate it.


  1. Sorry to see you in this place. My version of this was that it came down on me "out of the blue". A year and a half ago I had a high stress, high energy job, and now I can't work, have many days just like the ones you describe.

    And it feels awful. But I'm focusing on figure out who I can be if I'm not the work that I used to do, etc. etc. And how to find the pleasure in what I have.

    In the meantime, get as much rest as you can, and try not to think about the future too much, until you are having a better day. It's hard to think clearly when you're feeling awful.

    Someone suggested hanging out to relaxing music when the days are bad. Seems to work somewhat for me.

  2. Jenny,
    I'm probably one of the persons who stated that I didn't know how you were coping with doing so much, and you should cut back. If I said that, then I knew what I was talking about...been there, done that. I keep telling myself that if I hadn't pushed myself so much, I wouldn't be in the position I am today, healthwise. Then again, who can predict what will befall us?

    I truly believe that we are given what we can handle in life, and people with chronic illnesses are incredibly strong, maybe not physically, but they (we) have nerves of steel with a character to match. We get crushed but we rebound and survive. You're going through a really bad crash right now. When that happens it plays not only on you physically, but also emotionally and mentally. When going through good periods, we tend to forget how we were able to cope with the bad ones. That is the nature of a disease...truly horrible periods with moments of remission. Do not get seem surrounded by many wonderful people who will help you. Remember this a bad patch that will pick up and get better soon. The only thing you must do is take care of number 1... nothing else is urgent. Be well.

  3. It's okay to cry. It's okay to be sad. (From reading your posts, you sound determined enough not to stay there forever.) We all have our moments. You're just being human. Best wishes and prayers in your difficult time.

  4. Thanks guys. Annie, once again I know you're right, but I still don't foresee myself slowing down. I mean, at the moment I'm stalled out, but as soon as possible I'll probably be pushing it again (though hopefully I'll incorporate some changes with work). I can't help myself. There's a line in Steel Magnolias (great movie, watch it if you haven't before) where Shelby's mom is telling her not to do something that will push her body, and Shelby says "I would rather have 30 minutes of wonderful than a lifetime of nothing special". Now, I don't plan to trade my longevity for my job nor do I think there could be nothing special without it, but it sums up my gut emotions about it.

    'Anonymous', I know what you mean, too. But, it's hard for me to find comfort in your approach to discovering your identity outside your previous job and such (wonderful as I think that approach is) because you HAD a career. You're dealing with the loss of something you've know. I'm dealling with the potential of never getting there at all. Plus, my husband is back in school for a few years and there is no alternative to me earning a sustainable income right now.

    And Stephanie, thanks. At least in the past 9 years I've learned that it is important to acknowledge a loss and mourn it. Yes, I am sad, sometimes very sad. But I'm also VERY angry, and a bit confused and definitely disheartened. I don't want to have the limitations I did years ago, and I can't find the strength to start the whole damn process again of trying to climb up out of this. Maybe my doctor will have some advice when I see her agin in a few weeks. Thanks, guys, I really like hearing your feedback, the input from people like you is something I didn't have before.


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