Sleep study tonight. I have mixed feelings about it. On the one hand, I’ve been looking forward to it since it was scheduled. On the other, I’m also nervous about it.
My working theory is that the severe fatigue, brain fog, and memory problems I experience are due in large part to my sleep issues. I’ve spent the last two years trying to sort out my sleep, much of it being guesswork. I’ve twice had take-home sleep monitoring devices, but beyond ruling out obstructive sleep apnea, I didn’t get much beyond that. Tonight, I’m having a full sleep study in a proper sleep lab.
With that said, I know that it’s generally a bad idea to get my hopes up about diagnostic testing. Anything I can do to put more energy into the bucket, I will do. Fixing my sleep has the potential to make a massive difference. If I can get quality data. If the somnologist who will be interpreting my results reads the research I sent to my doctor. If my doctor is willing to see me as an equal partner.
The fatigue and the brain fog so severely impact my life that it’s hard to not be hopeful about something like this. While I do my best to make peace with the reality I currently have, I want my life back. There is a level of functioning I consider acceptable and I’m not even close to that. Figuring out why my sleep quality is so bad and finding adequate treatments has the potential to give me a lot.
I can’t attend school full-time; I’m on a part-time schedule and even that requires me to be extremely careful about my energy management. I still need other people to do my grocery shopping for me. I still can’t have more than two appointments, meetings, or social activities in a week without risking sending myself into a flare. Before I got diagnosed, when I did try to work and do school (both part-time), I failed my only academic class because I was so exhausted after a shift I couldn’t study. To say I’m worried about my future, about supporting myself once I’m out of school, about having a life that is anything other than miserable, is an understatement.
Technically, I know I could drag myself to an office job forty hours a week. (For a bit. Until the inevitable flare that would likely hospitalize me.) Every ounce of my energy would go into showing up, and functioning, and going home. Nothing left over. No cooking. No cleaning. No reading. No exercising. No creating. No thinking. Looking at all the things I would like to do, but simply can’t. The word “fun” becomes shorthand for, “Something I’d enjoy…if I had the energy to enjoy it.”
I’ve done it before. It’s a horrible existence. If you can’t viscerally appreciate how awful it is, think about it this way. Pushing beyond my energy limits is like having the flu 24/7. Maintain a normal schedule, plus social engagements and hobbies, when you have the flu and tell me how it feels. Tell me that you’re capable of enjoying any of it when all you want is to go back to bed, when your body screams at you every time you move, when standing is like sprinting, when a simple conversation leaves your head pounding for hours afterwards. Tell me you don’t feel like the world is passing you by while you struggle mightily to simply maintain your existence. Try having a happy, productive, fulfilling life when that is your reality. Want to end the pain yet?
Remember that my flu never goes away.
The only way I’ve found to not feel that way every waking moment is to drastically reduce my activity level. Anything that takes energy – getting up for water, answering a phone call, making small talk – has to be factored in, because it’s absolute hell if I don’t. I won’t have room for the things that truly matter to me, like being able to retain anything whatsoever from the classes I love, or spending time with friends and family where I’m truly present, if I don’t. I still don’t have enough energy for those things, but by being ruthless with demands on my energy, I have a bit. A couple of hours each day. But for my future, for the things I want to do with my life, I need more energy.
So yeah, I’m a little nervous about tonight. I have options; I have potential drugs to try; I have information. I won’t be desolate if things don’t go well, if I don’t get useful data, if the somnologist rules out sleep apnea and then fails to keep looking. I have some pretty good ideas about why my sleep is so bad; more than anything, this is to give me a better idea of which components of my underlying issues are contributing the most. But I’d be dishonest if I didn’t admit how much this has the potential to affect my life.
Veteran Zebra: My Medical Life 