Friday, November 21, 2008

Adjusting ....

You would think that getting well would be like getting over a cold ... you just move on, back to what you've always done. But what about when you've been sick for years? What about when you've dropped out of life just to have the energy to breath?

When I was losing my mental capacity, it was frustrating. I knew I was forgetting things. I knew I didn't understand what people were saying. I knew I couldn't read anything longer than a couple lines. I knew I had trouble speaking. I knew I didn't recognize people .... got lost driving ..... etc. Eventually though, it became the norm.

The family adjusted by calling me ten minutes before I had to go somewhere or leaving me notes in the morning of what was happening in the afternoon. I adjusted by taking someone in the car with me to remind me where we were going and to help if I got disoriented away from home. The kids learned to cook, clean and do laundry.

I also adjusted to the pain and fatigue of being ill. I knew what it felt like to hurt .... to not have the strength to function.

I adjusted to being on up to 72 pills per day.

I adjusted to the fact that this disease is chronic. With a combination of conventional and alternative medicine, I got to the point where I had good days, days where I could function somewhat normally.

Now, all of a sudden, I am well. For those who know me, you won't be surprised that for the time being I'm cleaning and organizing, LOL! We moved into this house when I was sick, so what's out in the open looks organized, but behind closed doors, in cabinets, in rooms in the basement I hardly know exist, it's not quite up to par.

This task will keep me busy for a couple weeks .... maybe a month ..... then what? I am in a unique position as an adult - the only thing I haven't dropped out of is the church choir (I play flute, don't sing).

What have I learned?

I have learned that being is more important than doing. I didn't see the use in my life when I was sick and couldn't do, but came to understand that God needed me to be. My family needed me to be. Anyone can do ..... most forget to be. Most become a sum of their tasks.

I've learned how lonely people who are sick become. It's a world where no one understands your pain or your fatigue. It's not that people don't care, it's that people don't understand. Everyone is so busy, that they don't realize you are not. Our world has become so busy that people don't take the time to visit with each other. Despite Starbucks, sitting around over a cup of coffee has gotten lost. People think being busy and doing all these tasks takes priority over sitting and visiting with a friend.

I have learned that more than anything, the best thing you can do for your kids is be available. I used to not be able to help my 10 year old with math, but she got what she needed just by sitting with me. I moved to the couch most days to be downstairs with the family. I tried to sit at the table for dinner with them. On good days I cooked. But the most important thing was, I was there. Now I can help my 15 year old with math, which, yeah, is a help, but the best part is, I'm available for her.

I've learned a lot about my husband. He's a strong, devoted man to have been able to bring us through the past few years. I've learned that, like the kids, his needs are simple. He needs me.

So, what will I do with my time now that I'm well? For the next several months, I'm just going to be a Mom. No other hats for me for a long time. Well, a mom who plays flute in the choir at church. ;)

PS For those who are wondering about my monthly flare up, it was very minor this month. I got a little tired, but not that crushing fatigue that comes from Lyme. No air hunger at all. No night sweats. No pain. No crushing fatigue. I bought some coinfection vials, so hopefully as I use those, I won't flare at all.


An Educated Patient said...

that was a great thing you wrote.
i am glad to hear you are where you hoped to be by this point and are still heading in the right direction.
i hope to follow in your footsteps with the same treatments.


Starlings Preschool said...

Six--hooray! have been following your blog with great interest. You're well! You and I have both been dealing with this a long time, so I have hopes for myself as well. Will you be keeping in touch w/Dr W?

heather. said...

wow, wow, and wow.

congratulations, carla. i am so happy for you.

and thank you for sharing your journey with us.



sixgoofykids said...

Thanks for your support. :)

I did receive an email from Dr. W and he said he'd be sending me treatment ideas soon. :)