July 23, 2011

The trouble with this disease that I have is that no one really sees it. I'm not in a hospital bed (usually). I get around fairly normally, and don't use any visible accessories like a cane, chair, eye patch, tubes. I don't have a crazy cough or things on my skin. I have hair enough on my head. The major thing for me is ... I am tired ... all ... the ... time. I can muster perhaps 3-6 max low to medium energy level hours of work per day. The rest, I'm out, lying down, exhausted, ready to sleep. Another quantitative example -- the other day, I went 17 hours without rest (half of which was just "hanging out" with friends I hadn't seen in a long time) and it took about half a week of zero energy (resting all day, no work) to recover.

The other trouble is that I'm usually so happy and upbeat when I do get to see friends. You see, I am really, really good at hiding any exhaustion. Usually, if I'm exceptionally tired I avoid people (unavoidable at work). But when I can (even though I might be low energy), I will push it up a notch and be quite happy, chatty, friendly. I will hang. Because of this, people make the assumption that everything is great or at least normal-ish and manageable all of the time. SO WRONG. (I'm absolutely sure the long lost friends I met with the other day still have absolutely NO idea how much this illness affects my life).

I think because of my tendency (a kinda life-long one at that) to push it and put on a good face, a lot of the people closest to me have never understood the truth. Because they have never seen the OTHER SIDE. The other side consisting of -- not being able to work full-time; if on a deadline (more often in nyc) and working more than usual, the passing out and the sheer exhaustion from a typical workday; the turning down hang outs and get togethers CONSTANTLY to stay in bed; after a work week, staying in bed all weekend long just to go back to work the next week; and the overwhelming build up of stress from lack of time dedicated to recovering/relaxing from the stress of work and daily life.

And then ... the rest of the OTHER SIDE. Partly of which is: profound fear of the future. Constant worry. What is going to happen when it really gets bad again? If this is as much "remission" as I'm going to get, how will I survive? Will I be on permanent disability? Will I lose my health insurance at some point? Will I have to pay for my $1000+ meds per month out of pocket, plus health insurance payments on disability? Will I ever have the energy or support to have my own family? Is my career on permanent hold or totally dissolving? Will I be financially solvent? What if my "back-up" runs out and there is no more back-up?

The only things I can do seem to be the following: Focus on the present. Treat my body not just well, but as if it were my precious child (when it's tired -- SLEEP, feed her only good stuff, be slow and patient, pace herself, etc). Be exceptionally frugal. Save as much as I possibly can. Get involved only with stuff that gives me joy, and DON'T get involved with stuff that gives me stress no matter how obligated I feel. (Perhaps that means detaching from people and situations that are harmful). Enjoy myself in what ways I can ... and then ... figure out what I'm going to do next to feed, shelter, and clothe myself ...

Anyway, it seems like no matter what is or what will be, because I have so little energy to expend, I spend much more time to carefully calculate every major endeavor before I begin it ...

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