Monday, February 6, 2012

When it gets to be too much.

Ok, I'm going to come out here, in hopes that it helps other patients: I have semi-regular nervous break-downs. Almost nobody (even my close friends) know about most of them. I act more regularly than most Hollywood actresses. No, that's not a snide comment about Hollywood (way too easy a target anyway), just a fact. I'm always on the stage. I'm the lupus fighter, the cancer fighter, the fibromyalgia fighter...the whatever fighter. I just got into my top grad school choice on that platform: the lupus fighter who wants to help other lupus fighters.  Always the fighter. Never the one who is beaten.

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. 

12 comments:

  1. Replies
    1. As I said, I think every lupus patient goes through these bouts, so I just wanted to put it out there as "Hey, I've been there. It's ok to admit that this sucks."

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  2. Yes. it is like that. Usually we cope and act very well. But sometimes, it's just too much.
    After few times, we get to know that this happens, and then later we will pick up and begin the act again. It is healthy to let it out once and awhile I think. We couldn't all the time, but it needs to be released sometime.
    Thanks.

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  3. Thank you! I don't like to dwell on negatives, but a couple of very wise friends have said to me every now and again, "Sam: it is ok to be upset about this. It is a lot to deal with!" Having that "permission" really was a huge relief at the time.

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  4. I'm happy to hear that I'm not the only one having semi-regular breakdowns. Most of the time I keep them to myself, but a few months ago I actually tried to resign at work. Thankfully my boss refused to let me. I learned a good lesson that day. Don't make lie altering decisions when my lupus has me in emotional and physical turmoil. That and I needed a therapist in addition to anti-depressants. I'm back to a point where I don't fall completely apart if I'm not well enough to work for a couple of days.

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  5. I figured most of us must feel this way occasionally, and I don't mind standing up and admitting it so that others know they aren't alone. I'm lucky in that I've had good psychological care throughout the worst of my experiences, so haven't ever really lost it. But I do go through these break-down bouts from time to time. It's normally my clue that it's time to pester the doctor about switching up my anti-deppressants again.

    I'm glad to hear that you have as nice a boss as mine. ;) I'm also happy to hear that you've learned (as much as any of us can) hope to cope with the bad times.

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  6. Melt-downs: they're not just for toddlers. (But grown-ups generally have them in private.) I don't have a chronic illness, but I do have some chronic challenges, and I do have breakdowns that most people don't know about. Life is really hard. I guess we all need to recognize that and and treat everyone we meet and if they might secretly be in the middle of some horrible crisis. All too often, that is true.

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    1. I totally agree. We as humans tend to judge by appearance. If someone looks fine, we assume they are. Perfectly understandable of us, but not always correct. :)

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  7. And FYI, I was never as cute as you are now for all that I was completely healthy. That doesn't make YOU healthy, but maybe it will pad your vanity slightly which may give you something to sit on when times get hard.

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  8. Aw, shucks, thanks! That's very kind of you! And I know it makes it harder for people to believe I'm sick, or that I do need and deserve handicapped parking plates, etc. But people don't realize that, for example, I stay thin because the drugs I take make me constantly nauseous...things like that. It may look nice, but it's actually a sign of ill-heath.

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  9. It's very humbling to read this when I think how I whine about just having a cold. I'm very impressed with all you do despite chronic illness- and I can totally see why you need to melt down. It's bloody damned unfair.

    And congratulations on Johns Hopkins! That's fantastic.

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    Replies
    1. Don't worry, I still whine just as much as I did in my pre-lupus life when I get a cold. Colds are no fun!

      Thanks! I'm extremely excited about Hopkins. It has the perfect program, perfect sub-emphases, studies on lupus, the whole works. I'm thrilled, as I say!

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