Change

I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

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*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!

Comparing notes

Yesterday I had lunch with a high school friend who has MS. She is the one person I know who can relate to many of my health issues. While she hasn't had cancer, she has had chemotherapy - it is used for MS as well as other ailments besides cancer. Its safe to say we can compare a lot of notes.

As we graduated from junior high and high school together, we both are 37 and holding. And our respective healths (I am not sure healths is a word but I'm using it) are in the toilet. We discussed exercise options - she is an avid hand cycler - and I go to the gym.

We also talked pain management and siblings. Pain management is big for both of us. Pain management while functioning like a normal human being is even more important. There is a fine line between the two. And siblings? Need I say more. We got to argue about who got the better handicapped parking space. I got there first and left her a closer van accessible space... that someone else took before she arrived.

I have many cancer friends these days but I don't know as many people with other chronic conditions. And my friends with rheumatoid don't seem to have anywhere as many symptoms as I do.

More than one ailment

So I read the news, a lot. And probably I read too much news and especially health news - searching for the elusive cures. But in reading the news, I see lots of different opinions and announcements as one would expect.

Two things caught my eye this morning. One reminds us that breast cancer is not the main killer of women. Its heart disease. While we cover the world in little pink ribbons for breast cancer, we need to remember heart disease and other ailments are out there as well and that also kill people.

Another article I read is about a woman who blogs about life with fibromyalgia. I read the article and then thought for a few minutes (a dangerous proposition I know). Yes she is struggling with fibromyalgia. But there are people out there, like me, that have fibromyalgia and additional ailments. So those struggles with fibromyalgia are piled on top of issues with other ailments or issues.

When we are diagnosed with an ailment, it becomes the hyperfocus of our lives. But we need to realize that we are not the worst off, there are many others who have their own pile of problems, including poverty, mental illness, and more and are in much worse shape.

Imagine life with your pile of ailments and issues and compound it with additional ones such as poverty, lack of health insurance or transportation, isolation, or other issues.

I make myself sometimes peel off my layers of focus on my life and keep the awareness of others who are worse off.

In the know

If you are perpetually sick/ill, you are in the know on how we feel. Someone came up with a list of 20 items but a few stuck out for me.

• You aren't quite sure what it means to feel "100%" because you're usually hovering at a solid 80% on a good day.
• Sometimes doing even the simplest of tasks feels like a five hour workout. Can I nap yet?
• By some miracle if you are actually not sick, you usually overexert yourself so much that you'll be sick again in a matter of days.
• Your immune system feels like its one weekend away from collapsing completely.
• Naps become more important part of your day.
• "You don't look sick to me". No, but my kidneys feel like they're failing so there's that.
• When you finally feel healthy again, it's an emotional experience for you. 

I'm not sure I'll ever hit that last one again but occasionally I can sit still and feel no aches, pains, or anything else for about 30 seconds.... Until I move and then it all starts up again.

And no, if you  haven't walked the walk, you can't tell me how I feel.

We aren't just our ailments

So I have a breast cancer blog because I have had breast cancer. I blog daily but not necessarily about breast cancer. Even when I first started blogging, it wasn't all about breast cancer. Sometimes it was about stupid doctors, or people lost in the parking garage, or other things.

Now its probably less about breast cancer and more about other things. Why? Because I am not just about breast cancer. I am about a bunch of other ailments and a lot of other things. I am a college graduate who works in both marketing and IT. I design and manage websites. I do catalog layout and design.I am happily married and we have two new cats who drive us crazy. And I go to the damn doctor too much.

I think all of us unhealthy people have a tendency to be defined by their ailments. I mean we might blog about them, or go to the doctor for them, or take a day (or ten) off work for them. But we are more than them.

We are men and women, tall and short, many different sizes and colors and religions and believes. We live in all parts of the world. The only thing we do have in common is we have an ailment.

We also do not want to answer questions about our health daily. I have a friend who asks me, every time I talk to her, how I am feeling. This is new since my second cancer but don't ask me in that tone, please. (You know what I mean.)

We are so much more than our ailments. Please let us be all of ourselves, not just our ailments.

I have a bad case of 'Icouldntcareless'

I have a new ailment and it is  a close relative to 'Apathy' and 'Screwitall', and its called 'Icoudntcareless'. Its symptoms border on fatigue and ennui and require lots of time with your feet up to recover from recent stresses.

Sometimes you get too much thrown at you to deal with and the best treatment is to ignore it all. That' s what I'm doing. The other day I blogged about blocking out life. I am continuing in that mode and taking things a step further.

My schedule for the next few days has lots of things on it but I am not going to do anything I don't have to. I finally caught up on some much needed sleep, I think. But I might need to get another 10 hours tonight (seriously). The knee doctor gave me a fancy new brace and wants me to try PT and then come back in 6-8 weeks. The good thing is I can do PT at my gym instead of going to a separate place with lots more appointments.

The fibromyalgia support group was okay, not great. It has potential but there is one woman in it who wants to be the center of attention and dominates all conversations. The other woman who attended did not speak unless directly addressed. A nice combination. I will try it a few more times and then decide but am leaning against it. I need to get over my current 'Icouldntcareless' before making any decisions.

Maybe I am turning into a cynic or something.