Well, it's the new year, 2010, a decade-starter, a clean slate. Except for people who don't get clean slates, like those of us with "pre-existing" conditions, chronic illnesses that never let us start over from scratch. For me, the New Year means I have to wait a whole year before I can take a week off again, and that is incredibly depressing because I am incredibly tired.
My gut is a mess. I need to get back to swimming (I usually swim every morning at 6 am, but I had an open wound and then surgery, so I had to take a hiatus). Once you stop something like that, it's so hard to start again, and there's NO way I can do it if I can't count on having a half-hour without needing a bathroom, which I can't right now.
I still have the feeling like everybody wants something from me -- and of course, they do -- that's my job, for goodness sake!!! And it's not that I don't want to help -- I do. It's one of the few things any more that gives me any energy. But my fatigue level is such that every time the phone rings, I have to take a deep breath and steel myself for the coming request.
I know it's just that I'm exhausted. I love my work. I even love my life, pretty much. Could I even handle a job out of the house? Pantihose? I'm not sure I have it in me any more. It's one thing to work 12 hour days in sweats three steps from a bathroom; but 12 hour days dressed up? I don't know if I can do it any more.
Still, running this business is so incredibly difficult. Not only am I in a situation in which nobody is worrying about me, but I have to raise all the money, do all the work, supervise the staff and interns -- and on and on. I just had to do end of month, end of quarter, and end of year financials and tax preparation -- it's a huge job in and of itself. And yes, we have some good grant money coming in right now, but it's (1) only for a year; and (2) tied to more work I have to do.
I'm so frigging tired.
This is not an aimless rant. One of the things we're seeing in the responses to our chronic illness survey is that one of the main problems is fatigue, and I totally get it. Sitting up rather than lying down takes effort. Typing takes effort. Walking downstairs takes effort. It just all feels like too much.
I feel like, if I had maybe a month off, I would feel better, but one week while listening to phones ringing and worrying about what's piling up -- it just didn't cut it. I might feel the same after a month. It's about chronicity. Being sick every single day, being in pain 24/7, not getting proper nutrition because I'm in the bathroom 10 times a day, not getting good sleep because I'm in the bathroom -- heck, the phone rang here at 10:45 last night and 8:30 this morning, both business calls!!! There is no time to recharge my batteries.
I don't have a clue what the answer is. I've noticed recently that doctors are prescribing things like Ritalin and Provigil off-label to help people with fatigue. Just what I need -- another pill! I think I'll stick with my one coffee per day. Still, it's tempting.
Anyway, my point is that chronic illness = tired -- period. And so I turned down an 8 city tour to talk about chronic pain because I can't bear the thought of 8 trips. And I will turn down other things. I will do my best to keep Advocacy for Patients going. I don't know what to do about the fact that our caseload is up so much -- I am telling people how to solve their own problems rather than taking their cases much of the time, which is less fun and interesting for me, less beneficial for the patients (I know, I'm empowering them and that's good, but having a lawyer really does make a difference with an insurance company). I'm doing everything I can to cut back and protect myself. But beyond that, I have no clue how to deal with a fatigue so deep and profound that sitting up takes effort.
I guess I keep doing it one day at a time. But it's not a whole lot of fun. Jennifer