Friday, September 16, 2011

National Chronic Invisible Illness Week: "You Just Don't Get It"

Tonight I went to an American Heritage Girls meeting with two of my girls. Last year I was an assistant leader, but this year I'm just being a mom in the group. I'll still be "helping out" with the older girls, as needed, but I'm not "official". Everyone knows I've had mono and that it's been hard to recover. People are very kind and understanding and solicitous about the fibromyalgia, too.

So, there's this one nice person there, who was describing her day tomorrow...or some Saturday...that family is always on the run, and she described ACTIVITIES from morning until night that she would literally be running from one thing to the next. Her family has four kids, I think. Baseball, Volleyball, this that and the other...I could not keep track. But her description was literally from about 8 in the morning until ten at night...

And I said "Wow, I don't know how you do it!" And she looked at me and said "Well, you do it too!" and I said "No, I REALLY DON'T!!!"

That was the end of that conversation.

You see, healthy people just don't get it. It seems like a thing, a burden, (actually its a CHOICE) but it's also a status symbol and a sign of good caring for one's kids to be that busy...that many activities (and they all cost money, take time, and require ENERGY.)

And no, I really don't do that.

What's my typical day like? I get out of bed, I have breakfast a bit of time on the computer. Shower, dressed. Morning prayers, reading out loud with the kids. History, German, Writing...the subjects we do together. then it's time for me to make lunch and for them to start doing their other subjects.

I, so far, have DONE next to nothing. But like sand running through an hour glass too quickly, as noon aproaches, after a very quiet morning...I am already slowing down.

If I am having a good day, I can get another three or four hours out of myself after lunch. I'm not talking about running around. I'm talking quiet work, at the sewing table, perhaps. If I have to run an errand...ONE errand will do me in. After that, I will be feeling very sick and on the couch. On a good day I will have planned ahead and made dinner in the crock pot sometime during my "good hours".

Today, I was able to do some sewing, and I'm so grateful. It was a good day. This means I had the energy to put one foot in front of the other and keep going, despite burning pain in all my muscles (even while I type this, it makes my arms burn). I went out for an hour to meet a girlfriend for coffee...what a treat! Dinner was soup in the crock pot and a loaf of bread one of my teenagers made. I make it to AHG only because my husband drives me there. My legs and arms are burning all evening long. I am glad I'm not in uniform anymore because this means I don't have to salute the flag. It is less painful to put my hand over my heart instead of holding my arm up in a salute. Grateful for the little things.

Tomorrow, I have to go to the Farmer's Market in the morning. What I don't get to do is help out at Church with the gardening. What I don't get to do is get together with the ladies to help bake for the festival next weekend. None of my kids play sports. No running around for that. Because I know that after the Farmer's Market, since I'm in a flare right now, I will probably be DONE for the day. If' I'm lucky I'll be able to do some hand sewing, even though it needs to be done by Tuesday and I'd like to get it off my to do list.

And I wonder to myself just WHEN will I do the rest of the grocery shopping?

But no, there's no "You do the same thing" in my life. I do very very differently from the average busy suburban soccer (or volleyball) mom. Everything I do is planned and balanced and weighed and measured, because everything I do will come at a price and I have to pay with pain and unbelievable fatigue. And that, my friends, is why I'm dedicating this post to all of those who "just don't get it."


Gold said...

My mother was out with a mystery back illness for much of my childhood. She had to spend several hours a day lying down and so missed out on a lot of that 'normal' kid stuff like coming to school shows and taking us to ballet. We've since learnt that time was incredibly difficult for her, but we certainly didn't suffer for not doing as many activities as others, or having her tote us around to different things. We just thought she was fabulous.

I wouldn't pay too much heed to soccer moms' assessment of what constitutes normal. (By the way I do think your day sounds like real work!) Based on my own experience, we don't look back and think of how much we did or didn't 'get done'... what we DO remember is whether she was interested in us, treated us like we were smart and beautiful, and fixed us up when we were down. You know. All that good stuff that can be done lying down in bed should the need be :)

elizabeth said...

I agree that you are doing things - sounds like a very full day with your kids and you are still interacting and engaging with them.

Frankly, I would NEVER want to have my kids so over-scheduled as that mother. I don't think it is healthy AND I think it can lead to an alienation in families as they are so busy doing things that they are no longer together or talking to the other.

It sounds like you are present to you kids (i.e. reading to them etc) in ways that an over-scheduled family may never have.

My parents once wanted us kids or at least asked us if we wanted to play 't-ball' when we were little; we said no and that was the end of it. We never played sports but instead played in the backyard and were happy.

Not every kid or family will be an extrovert family that is always on the go.

We were not and I don't want this either now that I am an adult.

Chin up Alana, it is a great struggle for you but I think you are doing a lot and doing well, esp. with what you are dealing with.

we must not get down by comparing ourselves to others, esp. when their life may never jive or fit with ours anyway.

Love to you.

Anonymous said...

I just want you to know that I was the child of a mom with chronic invisible illness all of my life. I would not trade that experience for being a child of the busiest soccer mom in the world. The faith and strength that you teach your children will be with them forever. I also don't consider a home schooling mom (teacher) to be a Sunday School picnic either, even if you were fully 100% healthy all of the time. You have given your family something money can't buy!!!!

Xenia Kathryn said...

You are doing absolutely nothing wrong, Alana.

I tremble to even think about adding ONE thing to our schedule (i.e. piano or swimming lessons). I just can't handle too much chaos. Although I don't have an invisible illness, I CHOOSE to not run around a lot because I think it's better for my family.

Other moms I know are running around constantly, they are NEVER home, and they wonder, "When will life slow down?" I bite my tongue, and try not to say anything.

You're doing great! Really!

Jo said...

My partner has fibro; I have chronic migraines. We joke that together we form maybe one whole healthy person. She's pretty active as far as having fibro goes -- there are ups and downs, and she has a really difficult time with the 'fibro fog' and remembering that that's part of fibro too, not just the pain. She's also had mono, and I can't even imagine what it would have been like if she'd had mono before the onset of her fibro.

Even if you *were* 'healthy' and free of your invisible illnesses, I'm not sure the running around from one thing to the next is necessarily a healthy way to live or raise one's children. I admire parents who are parents, who take an active role in the raising of their children (these are the people that *should* be reproducing), and homeschooling has got to be overwhelming even for a "healthy" person. (I almost wish I'd been homeschooled, but then I'd've had to have different parents to make that work, so on second thought, glad I wasn't.)

I'm sorry your illnesses have cut into the things in life you enjoy and that nourish you; you don't need to add to that by doubting yourself based on what other people's schedules look like.

Anonymous said...

Thank you so much for your recent posts about 'NCIIW'. I have been dealing with what is probably CF/Fibro for a couple of years now without a diagnosis. Most people don't understand how frustrating it can be not knowing how you are going to feel from day to day or hour to hour. They just tell you to 'get over it'. Reading your blog and how you have to struggle has really helped me. It can be so disheartening that every day tasks are now like climbing a mountain or being dragged through mud!