Sleeping Sickness

At one point in my life sleeping was a normal phenomena. I went to bed, dreamed, woke up. Then I had to readjust after my first set of strokes as they left me with epilepsy, specifically epilepsy that mostly occurred while I slept. So sleeping went something like this: go to bed, seize most of the night, wake up. Then I went on medication and sleeping went back to mostly normal. But then this year happened... By February, sleeping went something like this: go to bed, vomit in my sleep, choke, wake up with pneumonitis, visit hospital, sleep in hospital for two weeks. Then rinse and repeat. Over and Over and Over...

Then something new happened... on top of the intermittent choking to death, I developed extreme fatigue that led to sleep upwards of 19 hours a day. Sleeping went something like this: go to bed, wake up choking, go back to sleep, wake up with my anxious dog Ella, go back to sleep, wake up to walk dogs, get so tired standing wasn't an option, go back to sleep. Driving spouse crazy with all the sleeping, be filmed by said spouse with cell phone snoring, get C-pap machine--repeat whole cycle with a nose mask whirring air into my lungs.

And sleeping doesn't remove the fatigue. Sleeping is more of a sudden, uncontrollable moment of being hit with a sedation dart following any type of physical activity that is normal--like walking up stairs. I've been told that Lupus comes with debilitating fatigue, so much so that some patients are prescribed amphetamines, which I've learned Medicare does not go for unless you have narcolepsy, which according to my husband I must have because I fall asleep in mid-conversation. In fact, when I went to see my therapist last, I was falling asleep in the session and I was starting to dream.

It's hard to describe what it's like to have severe fatigue and to sleep as much as I do. Most people I think assume that sleeping is a great thing and that I'm lucky I get to sleep so much. But it's not. It makes getting things done next to impossible. It messes up my relationship--there's nothing more relationship building then falling asleep while your spouse tells you something important. Then there is the over all feeling of, well, sickness that comes with it. I feel sick, diseased, disabled,... that leads to the last thing that gets added to my sleep cycle, depression.

For those of you who don't know depression, one of the key symptoms is, you guessed it... sleeping excessively.

So now my sleep looks something like this:

1. Sleep
2. Reflux stomach acid
3. Choke
4. Air forced into lungs by the whirring C-Pap
5. Sleep
6. Wake up with anxious dog and get annoyed
7. Sleep
8. Wake up and walk dogs and take medicine
9. Get so tired after walking, sleep until noon, maybe 3 pm
10. Wake up, look at clock, get depressed
11. Try not to fall back to sleep
12. Keep trying not to sleep...
13. Keep trying...
14. 11 pm go back to sleep.

I don't have seizures often anymore, so that's at least something.