How is a disaster like a chronic illness? Let me tell you...

by Jenni Prokopy, the Editrix

Regular readers of the site know that ChronicBabe is not all about me. Yes, I created (and run) the site. Yes, I write personal stories to share my experiences as a ChronicBabe. But it's not a conventional blog, focusing on just me me me. It's more about sharing ideas to help YOU, dear readers, and building a collective of many voices.

But this recovery period I've been in since our house was nearly destroyed in THE STORM in August has just about had me whipped, and I haven't felt the kind of energy I usually do, the energy that feeds me helpful ideas to share with you all. I've been drained.

So tonight, I decided to write to you about how living through a trauma like this is SO MUCH like living with chronic illness, so much like coping with a diagnosis and dealing with the aftermath. I think that if I get some of this off my chest, I'll be clear and ready to write productively again for you. And I want that very, very badly right now. So here goes...my laundry list.*

No, everything is not OK now.

People keep asking me if everything is OK now. When I was diagnosed with fibromyalgia, it came after many months of grueling tests and bizarre symptoms and loads of worrying. So a diagnosis seemed to indicate to many people that everything was OK—that putting a name to it made it all better.

And a few months after the diagnosis, many of those same people expected me to be back to my old self. Hey, you know what it is, this previously nameless condition, so now you can fix it, right? Nope. Not how it works.

The same holds true with our home. Yes, they've started to rebuild. Yes, we've submitted insurance claims. Yes, we are in nice, comfy temporary housing. Yes, we have internet. NO, I AM NOT OK NOW. I don't think I'll be OK for a long time to come.

I'll get through it, I'll deal, I'll laugh at times and cry at others. Friends and family will offer up terrific coping strategies and I'll try all of them, really, I will. But nothing can change the fact that my home was almost completely destroyed WITH ME IN IT.

What is "all better?"

At first I thought that once we got my home office set up, I'd be all better. Then I thought once I got out socially more, I would be all better.

I'm beginning to think that I'll only be all better when we're back in our home, and even then, I have my doubts. I still wake up with nightmares that the ceiling is caving in on me, weighed down with the waterlogged belongings of my neighbor, water dripping all around me.

When I get home, will I stand in my dining room in the middle of the night, waiting for the dripping to start again? Will I sniff the air every morning when I wake up, searching for hidden whiffs of mold? I hope not. Surely, Hubby Steve will help me avoid total neurosis. But I think it will be hard.

I had the same problem for the first few years after my fibromyalgia diagnosis. Every itch, every headache, every stomach upset worried me. I was ever vigilant for the next symptom that would herald yet another disease, or mark my imminent decline. It was like post-traumatic stress: I was hair-trigger ready to see the worst, to see more illness in myself. It's taken me a long time to get over it. (And truth be told, I'm not completely over it, but I can spot the old paranoia before it causes any real trouble.)

No, I can't help you right now.

I'm exhausted, stretched to the limit. I had to take a month off of work to handle all the goings-on (I hardly had a choice, with no home office to work in). Now that I'm working again, I have to balance a heavy workload, the endless pile of insurance paperwork, the stress of big decisions that no one can really help me and STeve with, and the weirdness of it all.

My symptoms are flaring, not just the fibromyalgia but the anxiety and depression too. It's a lot to cope with.

So, no, I don't have time to help you with that volunteer project, or job hunt, or meeting, or whatever. I'm afraid I'm a bit busy dealing with my own life. Please don't take it personally—it's so NOT PERSONAL. I have to protect and heal myself right now.

When I first got sick, I went through the same process. I'd always been ultra-generous with my time, racing to a friend's side to help with a project or cause. Then I got sick and some people took it personally when I had to cancel plans or decline a request. But it's not personal! In times of need, stress, illness, we have to take care of ourselves first. How can I take care of others when I'm not taking care of myself?

The straw that breaks the back...

When I'm flaring up, it's the little things that get me down. Like having a big pain day that I'm managing fairly well, but then I stub my toe and burst into tears. Or I feel exhausted and all I want is a nice nap, but a neighbor honks their car below my bedroom window. It's the same right now—I've survived a trauma, but it's running out of printer paper that has me sobbing on the bed.

An example: Our phone company at the temporary housing misspelled our name on the account, so I called to have it corrected. Today a phone bill came and they charged me $4 to "change my directory listing." Um, excuse me? It was your fault our name had to be changed. I wanted to scream. A few hours later, I could see it was a tiny thing, but at the time, correcting it was one more phone call in a long line of phone calls to make.

Another example: Other residents in our temporary apartment building leave poo everywhere. I've been trying to swim every day, and the other day I was doing laps and thought I spied a penny at the bottom. I dove down and right as I reached out for it, I realized, hey, that's not a penny. It's a little poo nugget. Ew. Two days later, I stepped out of the elevator on my floor, turned a corner, and encountered a little coil of poo in the hallway. Seriously! What's up with the poo? I don't know. But it's wearing on my last nerve. If I see poo again I just might go a little crazy, pick it up, and use it like chalk to write a message on the wall, like, STOP LEAVING POO EVERYWHERE YOU LAZY JERKS. I guess it had better be a big poo to get all those words out.

I'm not thinking straight all the time.

See the above paragraph for an example. I mean, who in their right mind thinks about writing on the wall with poo? (Hey, if my landlord is reading this, I'm not really going to write on the wall with poo. I promise.)

It's the same when I'm not feeling well—when I feel really awful, I start to think desperately, hunting for solutions at almost any cost. Right after my diagnosis, that off-kilter thinking had me saying and doing nonsensical stuff.

I've had the same experience since the storm. I've said and done things that came out sounding so desperate even I was disgusted with myself. And I've found funny evidence of my screwed-up thinking, like little notes to myself that don't make sense, or bizarre items turning up in bizarre locations in the apartment.

(For example, a sample bag of condoms given to me as a party gag gift turned up in a sandwich baggie along with the keys to my neighbors' condos. "What kind of crazy key party are you planning?" my pal Adam asked when he saw it.) Did I pack that baggie? I don't remember. Did I, two days after the storm, think I would need glow-in-the-dark condoms and keys in case of emergency? What was I thinking? What does it all mean? I have no idea. I just know I made the decision to combine those items at a time when my head was in a fog.

But I'm on the path to normalcy.

Once again, I find myself making plans and lists of things to do to help me feel better, just like when I have a big fibromyalgia or anxiety flareup. In a recent conversation, I was listing the things I'm starting to do again to help ease the depression and anxiety I've felt, and a pal said, "you mean, you're trying to live your normal life?" At that moment, I truly realized how abnormal my life has been lately.

Getting back to a routine is definitely key to feeling better, I think. (And my docs confirm this.) So I'm back to working out daily, stretching on a schedule, meditating regularly, trying to eat healthier and cook more, getting social with people, reading books for pleasure, enjoying music, getting stuff together to make jewelry. Etc.

You can't unlearn what you've already learned.

Finally, writing this all down has put me in mind of something one of my docs has said to me time after time: this is not a new experience for you, you're not starting from scratch—you really do know how to do this, you're just not used to applying your skills to this type of situation.

Even when a crisis happens, you don't lose those trusty coping skills you've been cultivating—they just might be hiding behind all the emotions you're feeling, or the sheer enormity of the tasks you must complete to get through the experience. It's important to find a way to remember what you know.

For me, that means checking in with my docs, and asking them to help refresh my memory on things like relaxation techniques and stretches for trouble spots. It means making a physical list of people I can call to talk to in times of stress or depression, or heading to the library to check out some of my old favorite books to re-read.

It also means nurturing creativity, the one skill that I can apply to almost any situation to make it better. There are things I can do to work around problems; I just need to take a little time each day to give my brain a chance to ruminate. It will take time, and patience, but it's worth it. So I'm trying to take 15 minutes each day to just be still, and think, and ponder the possibilities.

Whew! That's a load off my shoulders.

It feels good to write all that down, and share it with you. In the early days after the storm, I couldn't see any possible positive outcomes. But thinking about it in this way actually helps. It reminds me that I've dealt with incredibly difficult situations before, and come out the other end a stronger, more confident, creative and accomplished woman. I think it will happen again this time, too. Actually, I KNOW it.

And I hope that if you've stuck with me to the end of this piece, you'll also take these ideas (really, the stuff toward the end of the article, not the poo-related bits) and apply them to your own situation. After all, if I can write this, and share this connection with you, and not feel alone, then you can take that connection with you, too. None of us is alone, and none us have to live without hope. Things can get better. We may not be able to make them perfect, or the way they were before, but we can make them better.

Much love, Jenni the Editrix

*P.S. For evidence that I am not always so negative or angry or frustrated, please see the rest of this site. :)

Posted: 10/15/2007 in Venting | Also posted in: Coping

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