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.