Monday, December 27, 2010

Pace yourself

I had a chance to live a more normal life, so what did I do?
-I showered, instead of bathing.
-I baked cookies.
-I ran errands.
-I drove.
-I socialized.
-I lived a life.
-I made the most of it.

-I overdid it.

It's hard to pace yourself when your body suddenly isn't telling you to stop.

But now, I'm at the bottom again, and it's a long, slow climb back up. I hope to deal with it better next time I get out. I hope I've learned. I also hope it's a shorter climb and a longer peak next time.

It's so hard being back down at the bottom, unable to get off the couch. Barely able to walk. Trouble catching my breath. Pain, extreme fatigue, overwhelming feeling of sickness. Such a long way to fall, and so suddenly. How will I ever climb back out of this hole again?

Wednesday, December 22, 2010

Getting Carried Away...

Things that are better, at least some days:
-waking up at 11:00, naturally, instead of noon
-able to wake up at 10:00 to an alarm one day, with no consequences, no nap
-able to take a shower instead of a bath
-able to shower more frequently
-able to have more active and upright time, on some days

The thing is, good days and bad days are a part of Chiari. They are a part of POTS. Good days are not unheard of. This doesn't necessarily mean anything. So I have to be careful not to get carried away, right? Keeping that in I go anyway:

I'm feeling like there are possibilities for my future. I'm considering looking into a new career. Am I crazy? I have no idea how plausible this is. I seriously would need to get SOOOO much better. I have no idea how much better it's possible for me to get, or if it will last. But maybe...


Hope is a scary thing.
I wish I could stop myself.
Cause I can never handle the let downs
Not another let down
Not this time.
I've done everything.
I've given up everything.
I lost everything and rebuilt.
Then I did it again.
And again.
I've waited.
I've endured.
I continued waiting.
I've been shut down so many times.
I've gone through more pain than I ever imagined I could.
But I did not give up.
I kept going.
I came very close.
I hit rock bottom.
Then I hit even lower.
I waited and endured and withstood even more pain.
This time should be my time.
If there is any way for me, this is it.
There's nothing else to try.
This has to be it.
It must be.
I don't have much left in me.
I don't know how to give much more.
It hurts too much.
I just don't think I could give any more.
But that's never really true, is it?
As much as it hurts, I always find a way.
I persist.
I push forward with might.
I always find new ways to forge ahead.
So it's never really over.
There's no last chance.
As long as I can always find a way to keep trying.

Sorry for any typos and the unorganized nature. This is just stream-of-consciousness. I don't really know anything about poetry. Just wanted to get some thoughts out.

I dedicate this to all of my Chiari friends that also persist in a daily battle. It takes strength and resilience. I don't know how some of them do it with a smile on their faces! I don't necessarily stay positive. I just don't give up. And that will still get you from one day to the next, which is all you can do sometimes.

In reality, I know that many people have this surgery and get better. Other people have this surgery and don't get better. And others have this surgery, get better, and then get worse again. There's still not enough research. It's still so early. There's no explanation for the outcomes. The doctors are doing their very best to help us with limited information. And I am very grateful that there are doctors out there willing to try.

At the very least, I have recovered from the side effects of the surgery at this point (no more crazy autonomic instability--back to normal POTS). Surgical pain is mostly gone--still some sharp pains in my head at times. My skull has healed in a strange way--it's got a pretty large protrusion that is very sore and sensitive. My scalp still has very strange sensation (hypersensitive and partially numb at the same time). My hair is growing back at the usual rate.

But I also feel that the number of good days is increasing. It's nothing dramatic. If I'm improving, it's at a very slow rate. I would call it incremental improvements. But that's good enough for me. I wish I could see into the future to know how much better I will get and how long it will take. Then I could plan better. I could decide if it makes sense to choose a new career and go get the necessary training. Will I ever be able to work a real job? How many hours a day? Would I be healthy enough to work reliable hours? I'd like to work. I'd like to contribute financially to the family, and feel like I have a purpose.

I will save the more long term question of having a family for another day...

For now, I will just keep going. Living every day as best as I can. Trying to be upright and active without overdoing it. Keeping track of any improvements without expecting too much of myself and my body. Being grateful for wherever I'm at in my long recovery process, and trying to be patient to find out where it will end up. Trying not to get carried away and be accepting of wherever I may land.

Never giving up. I must remember that recovery is not a linear process. There are always steps forwards and backwards. After the busy holidays, I should expect some bad days to follow. But I must remember not to be discouraged by the bad days, even if they last for a few weeks. The good days will return, and ultimately, recovery will progress forward.

Of course, I must also keep in mind that we have no idea how far this recovery will progress (thus, not getting carried away).

Okay, I've said way too much, which tends to happen this late at night. I will probably not be waking at 11:00 tomorrow, as it is 3:00 here. My body is used to 11 hours. A bit less tonight I guess. Just got carried away again.