Saturday, March 28, 2015

That's The Thing About Pain: It Demands to be Felt

That's The Thing About Pain. It Demands To Be Felt (John Green The Fault In Our Starts)

Before I had chronic pain, even though I was a physician, I had this naive idea that, at some point, you could ignore pain. I thought that it would become kind of like an annoying sound that you could just put in the back of your mind and still go on with life. After all, I didn't have very many chronic pain patients. Most of them went to pain specialists and I thought that with appropriate meds that the pain just became part of the things you didn't "see" anymore, like the stains on the rug or the mismatched towels.

I was totally wrong. And I totally apologize to anyone to whom I was less sensitive than I should have been. (Although, even though I didn't understand chronic pain, I did try to be as sympathetic as possible.) You see, John Green had it right. "Pain demands to be felt." And that doesn't matter if it is acute pain or chronic pain. We tend to see acute pain, like a broken bone or acute abdominal pain, as being somehow "more painful" than chronic pain, but they are really just different kinds of pain. Acute pain tends to be easier to treat, and, therefore, a little easier for physicians to deal with. As an MD, I found acute migraines to be much easier to handle than chronic migraines. Most acute migraines will respond to one of a given set of treatments. When the patient would feel better, I would send them home, and life would be good.

Chronic pain is a different story. It's still pain, but it's a different quality than acute pain. It can be as intense, but is usually a dull or throbbing kind of pain. And just like acute pain, it demands to be heard. That's what constantly amazes me. There's no way to ignore it. I use some distraction techniques like knitting and reading, although reading can make things worse when the headache is bad. (I think that's specific to migraines and not with all chronic pain.) Sometimes that helps. The medical literature suggests that exercise provides "happy chemicals" in the brains of those with chronic pain, so I decide to walk on the treadmill or outside.  Except that walking often makes the headache worse.

It's frustrating. Pain demands to be felt. Yes, I feel the pain of my headache. So, what now? God, are you trying to tell me something? I've been listening for the last 8 years? I'm still listening. Is this just supposed to be making me stronger? I'm not much stronger physically. It's hard to exercise when I'm always in pain. And I can't sleep till the sleeping meds kick in when my head aches at night. So, God, I think I need you to write down whatever it is that I'm supposed to be learning or getting out of this headache experience on a notepad and put it on my bedside table. You can put it right on top of the CPAP machine and I'll be sure to get it. Because I've been feeling the pain. And I could be done with it really soon. Just an FYI.

Friday, March 27, 2015

A Post About Laundry and Only Laundry

Laundry. It's my nemesis. I truly, truly, truly hate doing laundry. I have never enjoyed doing laundry. I think my problem is that there are so many steps to it: sort the clothes, take them to the basement, wash, dry, hang up or fold, put the clothes away, put the hampers away. I so often get stalled out at the hanging or folding stage. I'm usually so good about finishing tasks, but not laundry.

When I was working, PWM and I kind of shared laundry duty. There was always laundry being done by someone. It worked out pretty well. When I quit working, I kind of de facto took over the laundry, except when I have week-long migraines, which is every couple of months. This can be pretty inconvenient if you are someone in the family who values things like clean underwear. And, PWM, at least, does. So, he can be counted on to step in and get us through crunch times with my migraines.

I did come up with a very helpful solution to some of my laundry issues. And a few other things. I turned kid laundry responsibilities over to the kids. Rosie Girl was 11 and Wild Man was 8 when I quit working. Within about a year, I had taught them how to do their laundry. (Since we bought all washable clothes, there were no delicate clothes to worry about.) By the time they each had reached the age of 12, they were responsible for their own laundry. Since they took the responsibility of taking care of the clothes, they also had the right of not having me or PWM worrying about how they chose to store their clean clothes. We only required that the kids look and smell presentable. So, laundry taken care of and no arguments about clean rooms. (It also helped that we don't allow food and drink up in the bedrooms.)

There have been some interesting lessons learned over the years. Wild Man, in particular, has been up late sometimes on Saturday night to get his Sunday clothes clean if he is part of the Sunday morning worship team. He's getting better at thinking about this earlier in the day on Saturday.

Rosie Girl found that it was nice that she knew how to do laundry when she left for college. However, she also found that the 45 minute drive home was actually not that far to drive to do her clothes at home since she also got a home-cooked meal (usually) along with seeing the family.

I decided today, though, that, in addition to my usual LaundryPalooza for me and PWM, I would wash Wild Man's clothes because Solo and Ensemble is on Saturday and Wild Man has had rehearsal's for the school play and for S&E and we're planning to go to another's school's play tomorrow night. I felt kind of sorry for the kid. And I hadn't seen his dress clothes in a few weeks, so I doubted they had made it through his laundry rotation yet. He tends to operate on a "need it now" basis.

Since I'm not a great laundress, I already had some white clothes from last week to fold (bad Mama! bad Mama!). I went ahead and did my and PWM's clothes and then got Wild Man's clothes from assorted locations - primarily the floor of his room. I think the boy has a month's worth of T-shirts!! I had him sort through and give me any that he doesn't wear anymore and he only gave me two. Wow. He ended up having four loads of clothes. I have no clue if they were all dirty because he doesn't actually keep his clean clothes in his dresser, but, whatever. The clothes - they are clean!!

And while I'm expounding on laundry, let me tell you about my great plans for towels. Because I'm sure you have nothing better to do than read about me and my towel issues. First of all, we have a rather motley collection of towels in our house. We have a full (tiny, but full) bathroom downstairs and a half bathroom upstairs. Our bathroom is right by the front door and there is not enough storage space in the bathroom for our towels, so we have a bookcase in the front hallway with our towels and a few other bathroom items on it. So, basically, we use the side door. Because coming in to see our muddy floors and boot collections is still classier than seeing our motley towel collection and how much toilet paper we have at the moment.

I've always been a towel folder myself, but I saw something the other day that reminded me that some people roll their towels and they look nice and neat. So, I'm thinking of getting some metal baskets and putting on the bathroom wall above the laundry hamper and storing our towels in there. I haven't measured to see if it will work, but it would solve a whole bunch of problems. If I could figure a few other storage solutions, we might could even have a front hallway again. The bathroom door would still be there, but the toilet paper would be gone. That would be an improvement.

Our motley assortment of towels is the result of having some nice and newer towels but also keeping in the rotation the towels that I bought when I left home to go to college. 30 years ago. I've been just cutting the strings off the sides as needed. PWM suggested tonight that I could throw those towels away. I'll make them into rags or give them to Goodwill so someone else can make them into rags. They're perfectly good fabric. In any case, PWM agreed that I should invest in newer towels that actually absorb water. Maybe that were made in this decade. And I thought I was being so frugal.

Well, LaundryPalooza is almost over. The clothes are clean and all but a few are folded and hung up. I'll put them away tomorrow - I promise!!! And it's midnight and I'm tired and Wisconsin won their basketball game which I can't believe I even care about. And, no, there is no deeper meaning to this post about laundry. It's just about laundry. And you're welcome to leave you're deep and insightful or shallow and silly or practical and useful ideas in the comments. And that would make me very happy.

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?