Sunday, March 22, 2015

I'm tired of fighting

I've had a migraine since Wednesday. It's been kind of up and down. Mostly 4-7/10. On Friday, for a while, it got up to a good 8/10. It feels like it is kind of tapering off today. I've also had the reappearance of some right sided head pain with cutaneous allodynia (pain when I'm touched) on my right forehead and scalp. That really comes and goes. It will be really bad for 20 minutes and then just moderate for several hours. But, it's never been quite gone for the last three weeks. Aaaarrrrggghhh.

Rosie Girl's choir professor was diagnosed with breast cancer last fall and had to have chemo and radiation. She gave out pink bracelets that say "kick it to the curb" referring to the breast cancer.

I find the "fighting illness" mentality interesting. I wonder what my grandparents' generation would have thought about it. For example, my grandfather had several severe heart attacks in the early 196os before he had a fatal heart attack. At the time, the only treatment, I believe, was to take nitroglycerin for pain and to rest. There was no "fighting" heart disease. In fact, for most diseases, people just did what their doctors said to do. They were passive; the doctors were active.

Somewhere in the 80s or 90s, I think was when things started to turn around. People started to get more involved in our own health care as the medical field started to see how changes in diet and exercise could impact disease processes as well as general health.

Now, when someone gets ill, they get the physician's treatment recommendation, but may also turn to other practitioners for additional treatment, especially when the diagnosis is complicated or doesn't have a clear cure, like with autoimmune diseases or migraines.

Unfortunately, some people have some to completely distrust medicine and have decided, based on limited research, to not avail themselves of proven interventions, like vaccines and treatments.

What interests me right now, though, is the "fighting illness" language, like "kick it to the curb". I have chronic migraine. How the heck am I supposed to fight a migraine? In sociological language, I can take the benefits of the sick role (limited social responsibilities) if I also take on the responsibilities of the sick role (pursuing treatment). But, if my migraines don't get better, does that mean that I'm a failure? What if someone else does get better? Is that person a better fighter than I am? How many treatments are enough to try? Am I fulfilling my "sick role" responsibilities by following my neuro's recommendations, or should I also see every possible alt med specialist? Or only the ones that don't make me twitchy?

Or maybe we are just supposed to fight to stay socially active. "She's a real fighter. She still comes to work even though she's in pain." But the man who had to go on disability because of his pain is a failure? What about the person who has become a social recluse because of their pain or illness? Are they not fighting hard enough? And, let's admit it, that disability label is a real downer.

And if we use the language of warfare, how do we know when we've won? So many people with chronic illness will die with that illness. Did the woman who died with breast cancer lose? Or did she win because she kept smiling? If I still have migraines when I'm 70, I suppose I'll never win. We'll just put chronic loser next to chronic migraine, I guess.

Or should we lose all the warfare talk when we talk about our illness? I like to talk about high-pain or low-pain days. Or sometimes use the word struggle. These aren't nearly as loaded words When I say I struggle, it means that I struggle based on my own criteria; I'm not fighting a fight that I'll never know if I win or lose. 

So, let's try that. Let's not talk about fighting or having to be brave. We'll talk about high-pain days. We'll talk about getting through. We'll give each other the grace to have a bad day. The grace to be on disability. The grace to work full-time. The grace to be where you are in your illness. 

I hate chronic pain. But, this is the life that God has given me to live, high-pain days and low-pain days. It really helps me not to think about getting up each day to fight again. I get up and know that God gives me the grace to go about my day, whatever pain level or productivity level it's going to be. "In this world you will have trouble, but, take heart, I have overcome the world." John 6:33  “Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest. 29 Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy, and my burden is light.” Matthew 11:28-30

Can we quit fighting?


Kay A said...

When I started reading this post, I honestly thought.... wait, did I write this at some point? Did I write this and forget I wrote it in my migraine-induced haze over the last few days.

Alas, I didn't write it, but man, I certainly could have. The fight exhausts me. It exhausts me clear to the bone. Or maybe it's the migraines. But it's the fight for answers, the fight for fairness and to not be judged by arbitrary labels like "disabled" and "chronic" and also "high functioning" and "looking normal." The fight is EXHAUSTING!

LSU doc said...

I see this all the time working with oncology patients. They come in with advanced disease and talk about fighting, but I describe it as their "journey" with cancer. When we go on a journey, we don't always know how long it will be or where it will go. I emphasize that regardless, their family and my team will go along with them and deal with things as they encounter them.