A Day in the Life

Today is a Not Great Day. Yesterday I had a Pretty Good Day. I had had acupuncture the day before and I was able to eat more solid food than I had in a while, albeit still at the cost of drinking formula, because every decision with GP requires a cost/benefit analysis. Good thing I have a MPA and career experience in budgeting.

A recent literature review of the latest research in GP indicated that acupuncture was the only treatment that improved quality of life and didn’t just mitigate symptoms. This has held up in my experience. Unfortunately, that good day may very well be the reason that I am feeling crappy today. But GP is so unpredictable, who knows.

Today I slept until 1pm after going to bed at about 10:45. But, I did take a shower before bed, and I find showers to be exhausting. Needing a lot of sleep is not unusual for me. Granted, I was a champion sleeper before GP, but now I truly cannot function with less that 14-16 hours of sleep. Of course, it is also possible that I absorbed some cat DNA at some point and have just become part cat.

I used to be a morning person (I actually really miss mornings, but given the chance, there are way more things I would get back before mornings). I now use that little burst of morning energy to scoop kitty litter, empty the dish drain, pour myself 2.75 oz of formula, mix up my electrolyte drink that will take me into the evening to finish and give Xena Malka, the most neglected drama queen cat ever, some scratches out of sight of her brothers.

Then I settle on the couch to gently force the formula down my gullet while I catch up on the world. Most days, that is immediately followed by going back to bed. My body does not do well with the first food of the day. I go into a weird shutdown mode where I literally stagger into bed and can do nothing but lay there with my eyes closed for 20 minutes to an hour. I can’t listen to music, a podcast or an audio book. They are just too overwhelming for my system. Fortunately, I usually have Dancer there to keep me company.

Once I get past all that drama, I get to finally start my day. On a Good Day, that can mean going for a walk and wandering the neighborhood. Although, I can’t walk more than 1/2 mile without triggering up to 3 recovery days afterwards. But, one of the many reasons that I love living in Astoria is that there is much to explore even within my tiny radius.

My new hobby is trolling the neighborhood for bakeries. Just because I can’t eat doesn’t mean that I still don’t get excited by delicious baked goods. I can feel like utter crap and spot an interesting looking restaurant and excitedly point it out to David. What can I say, good food excites me even when I can’t eat it.

On a Not Great Day like today, all I have in me is sitting on the couch while I struggle to get 24oz. of electrolyte solution and as much formula as I can manage into me. Which is harder than you might think. Every sip feels like a lead ball being dropped into my stomach, followed by a wave nausea that I can feel all the way up to the back of my throat. Thankfully, I have a Medical Marijuana prescription, and my current strain, “Remo Chemo” does a pretty good job at keeping the nausea down to a dull roar.

On a Good Day, I can spend my day reading. On a Pretty Good Day, I can write this blog post. On a Bad Day, I can watch decent TV or a movie. On a Really Bad Day, I slip back into the sick days of my youth, watching mindless sitcoms. Think Love, American Style or Charlie’s Angels reruns.

Thus is a day in my life. And all done after only ingesting ~between 375 and 500 calories a day.