Friday, May 14, 2010

A Day in the Life (with Chiari/POTS/EDS/Cranial Settling/Cranio-Cervical Instability)

I wake up around noon (please don’t express jealously--that's just mean). I immediately feel the aches and pains of the morning and the headache of the day, but it’s usually too soon to know how bad the day will be. At this point, I can only tell if it will be an easy or a difficult wake-up. Some mornings, I wake up feeling like I’ve actually slept. Most mornings, though, I wake up feeling the peak of lethargy. Either way, I drag my heavy body out of bed and head downstairs.

First, I eat a bowl of Grape Nuts on the couch. This is followed by my morning pills. I may or may not have a dramatic and prolonged choking spell on a pill, or even my water, for that matter. At this point, I am unable to move until lunch time. I force myself to eat lunch exactly two hours after I finish eating breakfast. The routine is helpful in remembering to eat, because hunger often never comes. Quite often, before lunch comes, I have a spell of reduced consciousness. My body goes limp, and I am unable to respond to much. If anyone is around and realizes that I am not just asleep, they may come and force a salt pill and water in my mouth. That will resolve the spell within ten minutes, most days. If no one is around or notices, I may remain semi-conscious for an extended period of time, unable to do anything. For lunch, my mom or my fiancé helps me to get apple slices and Triscuits. Then, I take my lunch pills. At this point, I am still unable to get off the couch for several more hours.

On a good day, around 5:00, I will be able to go get washed up and dressed. I don't have the energy for a shower every day, or to even get dressed every day. But most days, I do get to eat dinner and take more pills. Since I can’t drive, there is nothing to do after dinner. I don’t have the energy anyway. I’d like to go for a walk around the block for my Physical Therapy, but currently, I’m not allowed to, because I’m so likely to have a drop attack. (I would enjoy getting out of the house, but even a walk around the block causes a considerable increase in pain, even on a good day. But this isn't allowed right now.) So, I generally just sit around and watch t.v. until 9:00, because that’s the only time of day that I may have company. At 9:00, I may try a few exercises (planks, toe raises, etc.). I’m always too tired, but I’ll force myself somedays. It is pure torture to exercise. If you see me exercise, you'll wonder what is wrong with me. But that's just the look of pain on my face from the exercise.

Miraculously, the best time of day for me, and many POTS patients, is late at night, which is why I’m typing this at 2:00 a.m. Unfortunately, this is another lonely time of night. Lately, the loneliness leads to a lot of tears, but that's not too unusual. It also ends up being a very unproductive time. But it’s hard to go to sleep too early, when it’s the best you’ve felt all day.

I've skipped over exciting things, like drop attacks, where I collapse straight to the floor in the middle of whatever I'm doing, or days of horrifying pain that prevent me from leaving my darkened bedroom. We'll skip any emotional peaks or particularly strange symptoms. We'll stick with average days.

So, that’s life. And I think it explains why I find it essentially impossible to work, nearly impossible to work out, and why I haven’t been able to maintain any friendships in years. How do you maintain a social life with a life like this (other than a virtual one)? Virtual friends are great, but they may or may not be counter-productive to real life relations, or so I’ve heard.
And so, I keep on living. Thank goodness for compassionate caretakers and little canine companions.

Disclaimer: I don't mean to say that this is what a day in the life of anyone with these conditions is like...just that this is what an average day at this point in my journey is like.