Rubber Bands

October 3, 2015 at 5:10 pm (Uncategorized) (, , , , )

I am finally coming back to life. It’s been not quite six weeks since my 33-day stint in the hospital, but it’s really only in the last few days that I feel myself picking up the fight again—the fight against the disease determining who I am, the fight against the god-awful tiredness and pain I feel every day, the fight against the part of myself that just wants to crawl into bed and never get up.

I used to bounce back more quickly after heath catastrophes. Or, at least it feels that way. Back in 2013 I was in the hospital for a grand total of 40 something days. They were 40 something terrible days of pain, vertigo, periods of blindness, and fear. But I picked myself up and shook the dirt off within a few days of getting home.

This last hospitalization was different. It’s not that I felt more pain or worse symptoms. But by the end I felt totally broken down. I could not stop crying when I got home. I cried if someone said something nice to me. I cried when my pain escalated. I cried when I thought of how much hurt my hospitalization had caused Andrew. I cried when I saw how exhausted Jay looked. Typically I’m not a weeper. But night after night I curled up on Jay and bawled my eyes out until his chest was sodden and I could not get enough air between my sobs.

It wasn’t just the crying that concerned me. After being flat on my back for 33 days, I lost a lot of physical strength and resiliency. I needed to sleep for 16, 17, or 18 hours a day. I woke to shuffle around the house a little, and then fell back into dreamless sleep that did not sate my fatigue. I’m ashamed to admit that I liked being in bed. I really didn’t want to get up. I was so out of shape that doing a simple task around the house like unloading the dishwasher wore me out. Plus getting out of bed and trying to do fold a load of laundry caused the pain in my head to escalate. It felt better and safer to curl up in bed listening to Scandinavian mysteries on my ipod.

The hardest part of getting up was running into Jay and Andrew and feeling horribly guilty at the impact my hospitalization had on them. Intellectually I knew that it wasn’t my fault any of this had happened. But emotionally I was raw with guilt. After absenting oneself from a family for a month, it takes patience and effort to muscle your way back into place. It took a few days after my return for Andrew to make eye contact with me. And Jay had to stay in constant motion to do everything around the house after working a full day. He looked brutalized by exhaustion. It was easier some days just to stay in bed instead of facing the damage I had caused.

What I’m describing is emotional and physical brittleness. It’s an aspect of chronic illness that’s hard for “outsiders”—all you healthy folks— to understand. I am fundamentally a different person than I was before I was diagnosed with sarcoidosis nearly 12 years ago. Each year of health crises, medical procedures, news of the disease traveling to a new organ, threats that I might die, rounds of chemotherapy, all wear me down a little more. Picture a new rubber band. Now imagine snapping that rubber band over and over. For a while the band will keep its shape—its innate resiliency. But eventually, the rubber band will start to stretch and sag. Keep up all that snapping and you run the risk the band will fray and break. I am that rubber band.

It’s easy to berate myself for being weak. If I was made of stronger stuff, each snap to my emotional and physical self wouldn’t break me down. There’s a lovely man who posts regularly to the Facebook support group for neurosarcoidosis I belong to. He looks to be in poor health. He posted photos of himself in the hospital, some from physical therapy where he was hooked up to oxygen on a treadmill. No matter how dire the image, he writes a version of the same thing: “You got this. Keep fighting.” It’s that kind of spirit I fear I’ve lost.

But I’ve begun to wonder if perhaps all this isn’t so starkly binary, strength or weakness, health or sickness. Living with a chronic illness means you are pitched out of a world of blacks and whites and into a vast land of grey. Maybe I didn’t feel strong during the two months since I got out of the hospital and maybe I opted out of some challenges on a daily basis. But when I look at what I’ve been doing more often than not, I feel some hope for myself. Even though it’s been incredibly hard–and at times feels impossible–I’ve been rebuilding. I’ve started going for walks to regain some of my lost physical strength and stamina. I had a heart-to-heart conversation with Andrew about my hospitalization and listened without crying while he told me how hard the month was when I was gone. I’ve begun to go back to work, picking up my never-ending book project. I’ve started cooking dinner again—not every night, but when I can—and showing up for Andrew’s soccer games. Maybe I too “got this.” So all you folks in Chronic Town—and all those in the “normal,” healthy world—keep fighting.

2 Comments

  1. Randy Bekkedahl said,

    Hi Rebecca. Soo good to see you online again. I always read your posts first, before anything else. You are such a good writer and describe things that I too feel, but you put it so aptly and clearly. I believe even those who do not suffer from a chronic illness can get a glimpse of what we suffer through your words. Please, please, write whenever you can.

    I really like your use of the “rubber band” to describe the brittleness you feel. My wife just last week said the same thing about to me. I had gone through a week of doctor visits, emergency rooms, more doctors, more tests—all because of some mysterious symptoms like head-aches, nausea, weakness in my legs and burning in my hands and feet. I was reduced to using a walker for the first time, and could not do the basics, like dress myself, drive the car—even get out of the house. While at the walk-in clinic to get them checked out, my blood oxygen dropped to 74 and I started to sweat profusely and shake. They thought I was having a heart attack, so tried to give me a EKG and put in an IV, etc. Then off to the emergency I went. Turned out not to be a heart attack. Or blood clot behind the lung, or the other things they thought I had, so they discharged me from the emergency room and I went home. The next day my regular doctor, my primary doctor, put me back on high dose prednisone and all my symptoms went away! The medical literature mentions nothing about these symptoms with my diseases, but I got ’em.

    I see my Rheum. next week, and it will be interesting to see what she has to say about it. But from all the tests, I did find out I have pulmonary hypertension, and have to go back for more images to make sure I don’t have congestive heart failure. I haven’t had a conversation with my doctor to see what he thinks is the cause of them, but I assume it is from all the forced inactivity from my conditions. But I have read that inflammation can get into the tissues of the heart and valves, so am a little nervous to find out. My main goal though, still remains to get the inflammation under control. The main drug I take , a biologic called Otezla, is not working. They want to switch me to a new one, Stellara, it is the only one I have not used out of all the biologics, so my Rheym. wants me to do it. But, Medicare has upped the co-pays on them, and my co-pay for one injection would be $2600 for one injection. Which, of course, I can’t afford. There used to be foundations like the Healthwell Foundation, and Patient Access Network, that gave grants for situations like that, but this year they have no funds for my diseases. They were funded by the Pharmacutical companies, but something change this year so I am mostly doing prednisone.

    We tried to do low-dose prednisone, where you stay on a certain dose forever, usually 3 to 10 mg a day. I tried it and the infammation keep coming back. The last attempt was at 15 mg a day, so the next attempt would be 20 mg a day, and that is not low-dose. My mother was on 20 a day for over a year (she had a rare auto-immune disease called Sclerosing Mesintaritis). That dose caused her bones to soften and she started getting spontanious fractures in her spine. I feel like I am at the point where I am facing a deal with the devil! Take the 20 mg a day and be able to function, but end up with all the side effects prednisone brings, or stay miserable.

    Sorry this comment is so long, I guess I feel chatty today.

    I will end with a prayer for all of us in Chronic Town, that we all find some measure of peace in this turmoil that engulfs us each day. That we have a chance to tell our families and friends who support us how much they mean to us and how grateful we are for them. I am giving you a hug Rebecca, I think we both have earned one!
    Randy Bekkedahl

  2. nan said,

    Wow. Nice to read something from you again. You got me. The burning in the throat and the jumbled feelings of empathy and sadness. We’ve been doing this dance for almost the same amount of time the steps keep getting more involved. I am glad you cried. I feel the sadness, deeply, just find a deeper numbness.
    Glad Andrew shared with you. I’m sorry you lose so much. Your writing is so appreciated and I thank you for sharing.

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