Monday, December 31, 2012

The New Normal

At the beginning of this year I was a college professor. Now I am a homeschooling mother.

At the beginning of this year I wore heels and jewelry and makeup every day. Now, I live in pajama pants and nerd t-shirts.

At the beginning of this year I was in pain every day. I still am, but not as much. And I've learned a lot about managing my disease.

About two and a half years ago I was diagnosed with fibromyalgia. I had been symptomatic for over a decade - it started being debilitating in the last few years. And as difficult as dealing with the pain has been, its assault on my mind has been much harder to deal with. They call it "fibro fog" and when that part shows up, my ability to think clearly and logically - such an inherent part of my personality, to think and speak precisely and elegantly - is undermined. I can't follow conversations. I hear other people, but can't process what they are saying. My vocabulary gets locked away and I can't find the words to express the thoughts that are fighting to get out. That's more frustrating to me than the pain.

But this is the new normal. There are days when I stay in my pajamas, because I literally have to choose between putting on jeans and reading stories to my child. I have reduced my outside commitments drastically because I have had to define my priorities, and my husband and my child are always going to come before anything else.

If I was in charge of the world, nothing would start before 1:00pm. It takes me three or four hours to get to the point where I feel like I have the energy to face the world. Rather, I think it would be more correct to say that it takes me three or four hours to accumulate enough energy to face the world. I wake up with an empty fuel tank, and a pretty good idea of how big my fuel tank is going to be for the day. That's a particularly frustrating point for people outside my family to grasp - my ability to deal with the outside world varies widely from day to day. I may be able to go out to the movies one day and seem fine, and the next day I'm going to stay in my pajamas and have someone bring me food. It makes planning ahead difficult. I never know when I am going to have a good day. I really want to take Cooper to Disneyland next year, but how do you plan something like that when your own health is variable? And then you feel guilt for not being able to do all the fun mom things, and that rebounds into making your symptoms worse.

I also have the fun additional quirks of having depression and being severely introverted. Depression makes the pain worse and the pain makes the depression worse, so that's fun. And then with being introverted, having to interact with people is exhausting. So, I might be able to go sit through Les Mis fine (I did and bawled like a baby) but going to a party for the same amount of time, where I'm expected to interact with people, especially people I don't know well, would end with me spending the next day in debilitating pain.

And that's the new normal for me, and for our family. We do the things we can when I can. GeekBoy picks up my slack when I can't do things, and never complains. We may not have the perfectly decorated home, and sometimes the dishes don't get washed for longer than I like to think about, but it works for us.

So I update facebook more than my blog, because posting a sentence or two, or just uploading a picture, is so much easier for me than writing out a thoughtful post. And we have grilled cheese sandwiches for dinner rather than pork loin or gnocchi. But my son reads now, and he didn't do that three months ago. And he skip counts by two for fun, and can do math in his head, and he builds elaborate marble mazes, and loves story hour at the library (my Thursday priority) and gymnastics (my Friday priority) and knows the first three Articles of Faith by memory and the first six apostles and he is kind and generous and thoughtful and sharing and that means I'm doing right by him even if he doesn't speak multiple languages or play a musical instrument. And he knows he is loved. Every minute of the day.

And my husband knows that I love him. And we laugh together, and I go to the movies with him when I can, and watch tv in bed with him when that's all I'm capable of doing, and he is the most amazing person for never letting me feel like he resents me for the additional burdens my health places on him and on our family. He is wonderful. He is my rock, and my guardian, and my best friend.

This is my new normal. It's a good normal. And I'm perfectly happy with it.


Clair said...

I totally empathize. I was diagnosed with Lupus three years ago. My brain fog in my opinion is the worst symptom. As frustrating as it is to have no control of when I will be able to function, or to have 5 "ologists" before I am even 40, not being able to articulate myself or recall a simple every day word is by far the worst symptom of all!

Interacting with a group of people is hard for me too. When there are multiple converstations/events going on, I can't focus on anything at all. I can no longer deal with ambient noise.

I also only plan one thing at a time, and sometimes that plan changes too :(

I would encourage you to try to go to Disneyland. Get there the night before so you can rest. Stay as close to the resort as possible so you can take a midday break. And don't try to see the entire park in one visit - hit the highlights. Disney is really good about accommodating people with a special need - they allow families with autistic children to get a pass that allows them to go to the front of the line. You could always rent one of those scooters to cut down on your walking.

We had a blast at Disney World. On one night when I was exhausted and felt like I couldn't go out, we ordered pizza, let the kids swim in the hotel pool and watched movies in our hotel room. It was still fun!

Hope 2013 brings you more good days than bad!

EmmaNadine said...

Thanks for this advice. The scooter idea is great!

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