Thursday, July 24, 2008

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.


Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.

Be well,


Kelly, FlywithHope said...

Wow, MJ. Your honesty is refreshing. I understand and identify with what you mean about resentment of healthy people who don't have to face decisions like we do, who seem to take their health for granted. Sometimes, when I am going through public places like the grocery, I want to just grab a random person and say "do you know how hard this is for me?" or "do you know that this is the one thing I get to do today?" or "do you know what I am sacrificing to be able to do this?"

I love that website and have had success in getting a friend of mine to better understand my daily struggles by using the "spoons" story.

You wrote exactly what I go through when you wrote all the questions and thoughts and decisions that go into going to something as simple as a bbq. I can't believe I am not the only one who does that! It is stressful and exhausting. And I never know if I made the best decision or not. If I go, I may feel worse. If I don't, my DH goes and I feel left out.

Thank you SO much for sharing MJ. Your post really touched me.

MaxJerz said...

Kelly, thank YOU for posting your comment. It was hard for me to post this, to even admit to myself, that I have these kinds of feelings sometimes. I'm glad to know there are others out there that understand what I'm going through. I wish none of us understood this, but at least we have each other, right?

*hugs* to you, Kelly. You are definitely not alone in this!

Be well,

chronic chick said...

I can understand what migraines are like, what you write is so true. ex links?

Leslie said...

Hey MJ,
I completely agree with you! I've made the mistake of having too many full days and late nights and spent most of today sleeping, and regreting the last week of my own decisions. Thanks for sharing!

Megan Oltman said...

Thanks for the honesty, MJ. Your description of the BBQ decision is very poignant and very telling. I wish it could be easier. And I too have lots of envy for those who don't struggle in their lives the way I do. It's good to be real about it.
- Megs

Holly said...

You put into words what I've been going through since I had my first migraine 14 years ago!!! I just came across your blog today-thank you so much!

MaxJerz said...

Thanks, everyone, for your comments. It took a lot for me to be so honest in this post, but I'm glad to have such positive feedback! All of you are part of what keeps me going every day. So, thank you! <3

Be well,

Migraine Chick said...

I really appreciate your honesty. I have these feelings, too. It's so hard to make even simple decisions sometimes and it feels like some elaborate equation.

Myth said...

I totally get that. Even though I am now a self-proclaimed hermit and people generally know their is a 90% chance I will not show to anything. I do make an effort for that 10% time, randomly on a good day, assuming it is not a work day, to venture outside, once the sun has set, to socialize. Frankly people should applaud the effort in achieving that. I often pat myself on the back just for making it out of bed. I do miss doing things, without thinking about doing things. I could say I miss being pain free, but my memory is not that long! But hey, pain sucks. We can mourn what we lost, and envy the ease others seem to move through the world. It is better than drowning in guilt because we do not meet up to societies expectations. I rather miss the optimistic ambitions I had for a potential career when I was younger... but such is life and I really don't have any ambition in that area any more, too much effort and health to delicate to make such longer term goals and plans. Maybe people envy that about me... not living by 'goals' and 'plans'. :)