What Goes Up Must Come Down—At Least in Chronic Town

May 7, 2011 at 10:38 pm (Uncategorized)

I’ve been feeling better.  I’ve also been feeling worse.  This is the vexing paradox of chronic illness.  Everything I wrote in my last few blog entries—that I’m feeling well enough to work again and feeling well enough to travel again—was entirely true.  It’s equally true, though, that I’ve been sick again too.  It’s just a lot less fun to write about vertigo, blind spells, crushing headaches, an infected abscess, and bottomless fatigue.

I want sarcoidosis to follow the trajectory of curable illnesses.  I’ve put in my time being sick, swallowed all my medicine, and followed the doctors’ orders.  So I should get to be well now, right?  I guess not.

This is the reality.  I’m able to work three or four days out of seven.  Then I spend an equal amount of time flat on my back.

I know all of you positive thinkers out there—myself included—are thinking that I should be grateful that I’m able to work at all now and travel anywhere.  You’re right.  Let me tell you, though, that after seven long years of pain and illness, counting blessings gets tiring.

I usually try to hide my grumpiness and frustration.  I like to think of myself as a positive person.  I get two treatments a month at Helena’s Cancer Treatment Center, which means I get plenty of reminders that I could have it a lot worse.  I want to be graceful under pressure and strong.

Unfortunately, when the neurosarcoidosis lands me in bed and nothing can ease the pain or restore my balance, I get awfully lonely.  Yes, it’s nice that I was able to write the day before and it’s nice that I might be able to write again tomorrow.  But it’s hard right now.

When I launched this blog, I wanted to create a place for all of us in Chronic Town.  It’s hard to contend with a bizarre disease that no one knows anything about, and harder still to have friends and family expecting us to get well—pronto.  I’ve tasked myself with writing what’s true here—even if it’s sad and bitter.  I want to write things that you can print out and show to your husbands or parents.  “See, I’m not the only one who is having a hard time with sarcoidosis.  Rebecca feels the same way.  She’s sick of being sick, sick of setbacks, sick of hoping.  She thinks she’s doing much better, and then she gets a flare-up and has to go to bed.”  There you have it.

What’s almost harder than managing my own disappointment at suffering a setback the day after working, is having to manage my friends and family’s disappointments.  You’d think that after seven long years, they’d finally get that sarcoidosis is not a linear disease, that just because I felt well enough to take a big trip in February doesn’t mean I’m well enough to pick up my normal life again.  It’s almost mind boggling how quickly people start heaping demands on me, always with the preface, “since you’re feeling better.”

Let me say this LOUD and clear for those of you living with or loving someone who has a chronic illness: chronic means that it doesn’t go away.  We’re not dealing with strep throat here.  Chronic illnesses wax and wane.  A chronic illness will let you take a trip or write an article or host a dinner party, but such activities exact a high price in return.

I’m lucky to have a partner who understands this—for the most part.  I’m lucky that my parents and friends do too—for the most part.  The toughest nut to crack, of course, is myself.  I push myself too much.  I get impatient when I can’t make my body obey my constant demands for more, more, more.  I’m the one who is melodramatic when I have no choice but to crawl into bed to wait for the vertigo to subside.  It’s me who drives my poor, sick body like a mean jockey flogging a tiring beast.  I lose all perspective of how far I’ve come.  I’m the one who needs to lighten up.  I need all the help I can get.

I’ve said it before, and I’m sure I will again: living with a chronic illness requires that you exist fully in each moment.  I’m sure this is one of the lessons I’m meant to learn from sarcoidosis.  Live now.  If I can write an article, take a walk, or travel to Iceland right now—do it.  If I’ve got to stay in bed, deal with pain, or contend with vertigo right now—so be it.  Trying to affix a label on the totality of my moments—by branding my moments as “well” or “sick”—is crazy-making.

I am both doing better and staying sick.  Instead of those troublesome labels, I try to envision my moments as beautiful bubbles that Andrew has launched into the spring wind.  I am writing in one bubble.  It will pop.  Such is life, right?  Here I am in another bubble, holding my head in pain.  Pop.  I ride the breeze with Andrew and Jay in the next bubble.

What’s next?

11 Comments

  1. Basil Rene said,

    It seems that we, chronic sufferers of sarcoidosis, according to all the blogs by such, are all feeling frustrated with ourselves and our illness. Is it the season? Is it that we all get flare ups because of our heightened immune response? What ever it is, we are feeling it in unison, so it helps to know we are not alone. We seem to be all feeling what you are feeling, and you have been able to so eloquently put it here so well. Keep your chin up, and damn it, put it down when you feel like crap and to hell with everyone else. We need to be able to feel bad when we do and not worry about everybody else. They are feeling well? Let them enjoy it for us while we curl up and wait for our crappy day(s) to pass. I guess as much as we hate it, it is out life now, and we, and especially “they”, have to get over it.

    • Rebecca Stanfel said,

      Thanks for writing Basil. And thanks for the perspective. Just “putting my chin down” when I feel like crap–instead of fighting it, kicking at it, and telling myself it should be otherwise–is what I have to do. That internalized “they” expecting “things” from me can make me crazier than the damn disease does. It’s nice that other people like you are thinking about this and writing about it. It helps not to feel so alone. Thanks for checking in.

  2. Barbara Barnes said,

    Such a great writing about chronic illness. It strikes me that many folks get to say “Glad THAT’S over”, and you get to say it, followed by “for now…”. Moment by moment living… suspended in each moment and then propelled into the next with no promises. Quite the journey.

    • Rebecca Stanfel said,

      Hi Barb. Thanks for the nice comment–and for understanding. Yes, it is quite the journey. Though sometimes I’m ready for a rest stop. I guess that’s where Basil’s advice comes in–pack it in when rest is needed and to hell with those (including the nagging, nasty voices in my head) who cluck in disapproval. xoxox

  3. Marianne said,

    And then to add to the chronic illness is the chronic reaction to the medication. I keep thinking my body will be back to the way it was before heavy meds. I think I just realized this month that chemo medicine changes your body forever, even if the illness “goes away.”

    • Rebecca Stanfel said,

      Good point, Marianne. One of the nurses at the Cancer Treatment Center where I get my infusion drugs off-handedly drove this point home to me last month. She complimented me on my hair. I used to have straight, blonde hair. After many months of chemo infusions every month, my hair grew in curly and red. When I told her this, she said, “Well, you know that these drugs change your DNA. That’s why your hair is different.” I’m not sure why this unsettled me so much, but it did. I guess it’s because it so neatly proves that this disease and the drugs I’ve taken to fight it have changed me so profoundly. I am in all ways–even biologically–a different person.

  4. sweets said,

    Hi, I just came across your blog via Basil Rene. I was diagnoses with type 1 diabetes just over 5 years ago, and sarcoidosis just this year. Chronic illness is so difficult for others to understand or even for one to explain to others. When I went to work one day recently feeling a bit under the weather a colleague asked why I did not stay home to get better, knowing I am suffering from a chronic illness. I guess most people just assume you take your meds and get better – afterall, that is the case with most things in life, right. For now I am hoping that this will in fact be the case with sarcoid for me, albeit a longer period than for something more “normal”, unlike my diabetes which I know is for life…

    I too have just been confirmed having neurosarcoid. But my symptoms are not nearly as severe as yours. Not sure if things were just caught early enough, but I am thankful, for now.

    • Rebecca Stanfel said,

      Thanks for writing to me. It certainly is difficult to explain to co-workers and family that illnesses like diabetes or sarcoidosis don’t go away after a day’s rest–if only it were so. It doesn’t help that if you didn’t know I used to look (athletic and energetic) you wouldn’t look at me now and say, “Wow, she’s sick.” I’m guessing it’s the same with you. We don’t look nearly as bad as we feel (at least with me), which makes our lingering illnesses all the more mysterious for our co-workers. That’s a lot of what motivates me to write this blog–it can get awfully lonely showing up for work and life when you feel like crap most days and it feels like no one has a sense of it. Just getting out of bed sometimes feels like a heroic victory. You hang in there. I’m glad you’re neuro symptoms are manageable. I really appreciate folks taking the time to read and comment on my blog.

  5. Dani said,

    “an infected abscess”…
    Rebecca, my family have all started “coming down” with sarcoidosis after I picked up a prevotella infection at work from a guy with false teeth who grew up on a dairy farm (he also suffers from boils, fatigue, needs fosamax etc).
    Since taking ginger tablets (car sick ginger) to treat the prevotella, and bifido yogurt to restore gut balance I do not feel so tired. If I stop the ginger, green tea, sage tea and yogurt, the biofilms revert. So you may need to work on the biofilm constantly. Also, have found that CoQ10/l-carnitine tablets are helping with fatigue. The sage tea also seems to keep the candida at bay. Epsom salts also help muscles.
    Best wishes, Dani.

    • Rebecca Stanfel said,

      Thanks for the input, Dani,

      I’m sorry to hear your family was having troubles.

      I am a big believer in ginger. I take a lot of it every day. I’ll give some thought to other remedies you mention.

      Thanks for reading and taking the time to comment.

      Best,
      Rebecca

  6. Flashback Friday: Let Yourself Be | Life As An Anomaly said,

    […] take a moment to read her post here. This is my comment to her blog post, which I thought I would share with everyone, because it was […]

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