But being beaten happens. Things get hard. Very hard. Maybe it's paying the co-pay for yet another specialist visit. Maybe it's having to confirm that, yes, I have a history of cancer. And lupus, yes. Oh, and fibromyalgia, certainly. ITP [lupus related bleeding disorder], yes, that was diagnosed when I was 18. Whatever it is that triggers it, any chronically ill patient (I'm guessing) goes through some sort of "Ok, enough, already. I can't take this any more" sort of melt-down.
Today my melt-down trigger was a my visit to the hand surgeon. Managed to get lost, even after calling to confirm the address, and after having googled the directions. Had to call office (again) for directions. Realized I'd forgotten all the paperwork they sent (most of which I'd already filled out). Finally saw the doctor who will be operating on my wrists. Had to go through the usual, yes, doctor, I have a history of cancer. How long ago? About six months. Now can we talk about my wrists? How long have I had symptoms? About fifteen years. Do my hands go numb? Yes, all the time. Do my elbows, shoulders and neck also hurt? Yes, always. Is the feeling in this finger less than this one? Yes. Why didn't I get the carpal tunnel surgery done years ago? Well, doctor, it's because I've had crap student insurance and couldn't afford it. Yes, I know my symptoms are very severe, but what was I supposed to do? This is America, where those who choose to study hard and work for years in an idealistic attempt to improve the world can count on virtually no medical support for the duration of those long years. Apparently this is our fault, although I still haven't worked out how, exactly.
Chronic illnesses suck. That's all there is to it. They really, really, suck. Yes, I have a couple of college degrees and could put it less vulgarly, but why should I? It's the simple truth. The chronically ill are always in pain. We rarely get enough sleep. (See previous comment about pain). Some of us go into minor seizure-like convulsions when we try to sleep, so we have the choice of seizure-nonsleep or drugged but not healthy/normal sleep. The diseases we have and the drugs we take for them make us spacey and slow, which is frustrating for everyone. We are often nauseous. Not for a few hours. For months. Or years. I personally live off of protein bars, ice-cream and tea. And the diagnoses just keep piling on (turns out I may now be allergic to gluten, what fun for a baker!). As do the number of specialists we have to see, the amount we pay for medical care, the number of drugs we have to be on to function even marginally, etc. And in many ways, the worst part is that most of us remember how it was before. We remember being able to breathe without pain. I personally can't remember ever having been free of joint-pain, but I'm sure many other patients can. We remember who we were, and know that we'll never be able to be that person again.
This isn't really a constructive post. I don't have any suggestions for how to solve our problems, because you can't. I've already written about what can be done to help, and I have been amazed and unspeakably grateful at the outpouring of support and kindness I personally have received. You are the people who pull me through this, who make me go on fighting. I can't thank you enough for that, and I hope other patients are similarly blessed. But I've learned that sometimes it helps for just one person in a group a group to admit that (s)he is, in fact, always putting on an act. Then other patients can let their guard down enough to admit, even to themselves, how hard these illnesses are. So, as I say, I'm coming out as a less than stellar lupus fighter, someone who does get beaten down, someone who most certainly isn't the pillar of strength some people seem to think she is. Someone who is sick, in pain, lonely and tired. And who knows that she is never going to be the person she once was.
|I'm an Episcopalian, not a Roman Catholic, but I like this picture of|
Juliana Falconieri, Patron Saint of Chronic Illnesses.
When all else fails, faith remains, whatever form that faith may take.
Side note: yes, I have psychological support. I think all lupus (or other chronically ill patients) should, if they possibly can. So I have the therapists, the anti-depressants, etc. that I need. You don't need to worry about any of that. I just wanted to, I suppose, show a glimpse of the woman behind the mask.