Tuesday, September 10, 2013

What My Chronic Illness Feels Like

Hey, remember me? I used to post more often, but lately I feel like I don't have anything new to say that I haven't already said so my blog has languished. (See apathy below) But Duncan sent out a topic for the September edition of Patients For A Moment that inspired me to get back to this blog. In the sense that imitation is a form of flattery, I've used a similar format to Duncan's post. 

Even people who share a diagnosis experience their chronic illness differently. And while I continue to collect secondary diagnoses, my primary diagnosis remains unknown. Or maybe I don't have a primary diagnosis -- who knows?

But here's how I feel. For today, at least.

Chronic Fatigue: I've written a lot about my intense fatigue over the years. My most popular post explained the difference between clinical fatigue and being tired. But what does it feel like? It feels like walking through the ocean, water above my head, fighting the undertow. Even the little things, like taking a shower or dressing myself, can be more than I can do when I flare. Even on good days, I so miss the days when taking a shower was energizing instead of enervating.

Joint Pain: I hurt. Every. Single. Day. Sometimes more, sometimes less. Over the years, I've learned to live with it and push it into the background most of the time. I use pain meds as rarely as possible because I'm always worried that the pain will get worse than it is and then I'll really need them. But I also know that out-of-control pain can spiral up rapidly and it's better to be ahead of it than desperately trying to catch  up and get it under control.

GI Issues: My GI stuff comes and goes, but has been sticking around for the past year or so without relief. It's primarily lower left quadrant pain, and ranges from a dull ache that I can ignore fairly well during the day thanks to distraction to feeling like I've been stabbed with a really big blade. Sometimes I feel like my belly is going to explode, and that exploding would be a huge relief. And the frequency and length of my bathroom visits have increased too, but I'm not all that comfortable discussing that publicly.

Tachycardia: My resting, horizontal, quiet heart rate hovers around 100 beats per minute, and I'm generally around 120bpm when I'm upright. Add conversation, and my heart rate goes up another 30bpm. Add movement, and it goes even higher. I usually don't feel like my heart is pounding, but sometimes I'm aware of it. I wonder how much my heart rate contributes to my fatigue, but my cardiologist strongly believes that my heart issues are secondary to whatever is causing my health issues.

Malaise: Malaise is the general sense of not feeling good all over that you get along with the flu or most other illnesses. It's feeling weak and yucky and sick, lethargic and like you've been knocked on your butt. For me, it goes hand-in-hand with my clinical fatigue, and the worse the fatigue is, the worse my malaise is. Both ebb and flow, but are present every day for me.

Arrhythmia: Ever feel your heart skip a beat? It happens to everyone, and most of the time it's no big deal. Sometimes it can be very dangerous, but I'm lucky enough not to have that type. But when I'm having them four or more times a minute, it gets painful. And it's tiring too, although I'm not sure I understand why, but my fatigue levels go up pretty high when my arrhythmia is acting up.

Frustration:  I got sick in June 2007, and have mystified doctors ever since and I'm oh, so tired of this! I'm frustrated by all the things I can't do, frustrated by the penalty I pay when I stretch my limits, frustrated when I have to tell Ellie, yet again, that I don't feel well, frustrated when a new symptom develops, frustrated every time a test result is inconclusive.

Fear: I live in fear of pushing too hard and causing a flare that leaves me fully housebound again and unable to do even the small, quiet activities that I do these days. Sometimes it paralyzes me and keeps me from trying to push those boundaries and sometimes it doesn't.

Calm:  I've been sick long enough now that I'm mostly out of crisis mode about my health. I still worry (see fear above), but I know that none of my current symptoms are likely to be life-threatening. There's pain and fatigue, but I know I can survive those, even when the levels get scary high.

Resentment: I resent when I'm forced to waste my limited energy on things like dealing with insurance companies and getting them to pay the way they should. Dealing with health insurance snafoos is annoying for everyone, but when you only have a couple hours a day when you feel well enough to get things done, it sucks to waste it on things like that.

Apathy: I'm down to a single doc (my gastroenterologist) who knew me before my mystery illness took over my life. And with my primary care doc's departure early this year, I no longer have anyone actively trying to figure out what's wrong with me. I find myself not really caring anymore, and not wanting to spend the energy on trying to figure it out or even just starting new relationships with new doctors. Better to save those spoons to spend on my family.

Depression: My moods are pretty stable these days (right, sweetie? :) but when I first realized, a few months after getting sick, that my life wasn't going back to normal anytime soon, I (quite understandably, imho) got depressed. For awhile there, I cried on and off at the drop of a hat. Luckily (er, sort of), I'd had post-partum depression just a couple years earlier and knew which anti-depressant I tolerated and responded to. I'm grateful that I didn't have to do the trial and error with various anti-depressants while I was so sick. And on high doses of Prednisone!

Gratitude: I'm lucky to have a supportive spouse, who does his best to pick up whatever slack he can and doesn't get mad at me for my health problems. There's a reason that traditional marriage vows mention that "in sickness and in health" part -- it is hard on a marriage when a spouse gets sick. Chronic illness is life-changing for both partners, even if one is still healthy, and often leads to divorce. I'm grateful that we're not on that path. Don't get me wrong -- I'm not grateful for my chronic illness, just for having an incredible husband.


Anonymous said...

Please read my blog antibodyninjagirl.com
I am 30 years old, am a sick momma too, & I think we need to connect. I am such an introvert, but ran across your blog today in a desperate internet search for one of those mystery solutions. I am still combing through yours to learn your story, but so far some things are remarkable. You have inspired one person today.

Anonymous said...

Have you ever heard of Ehlers-Danlos Syndrome? I think it might be the piece of the puzzle you are looking for! It inlcudes your joint pain, problems and surgeries, POTS, autonomic disfunction, tachycardia, digestive issues, chronic fatigue and more! Check out ednf.org for more information or google it! For a diagnosis you need to see a clinical geneticist, but a first step can be a rheumatologist.

Anonymous said...

Look up Ehlers- Danlos Syndrome

Aviva said...

Thanks for the suggestion of Ehlers-Danlos Syndrome! I don't think I qualify because I don't have the loose joints that are a key part of it. But I'll ask next time I'm at the rheumy!