Recently I have been rather defiant of my illnesses; I ignore the voice in my head that tells me to slow down or I’ll be down for the count for days. I’ve gone 4 days without infusing just so I could go to my friend’s bachelorette weekend at the beach without having awkward stares from strangers at the needles in my chest as I lay in the sand next to 8 perfectly healthy young women. The sun and alcohol mixed from an occasion of this sort is something that my rational self would remind me to avoid, but my little devil on my shoulder got me with “you’re 23, live it up while you can; after all you probably don’t have as much time left for this type of thing as the rest of these girls”. I was bed ridden for 3 days straight, literally bed ridden not just exhausted but truly stuck in bed for everything except using the bathroom my neighbor had to bring me meals and walk my dog for me all 3 days, after that and walked with my cane the rest of that week and could barely see straight enough to drive. Then there was the trip to DC with my boyfriend. We went on lots of adventures in 97 degree heat and I deaccessed myself the first night when we got to the hotel, even though just two days earlier my infusions had been ordered by m doctor to double and I had only completed 3 so far that week. But nevertheless I persisted as the hard headed woman that I am, I was determined to show my boyfriend around one of my favorite cities in the country. After this I remained very POTSy for about a week.
I think I am learning my lesson though. I have begun really sticking to the doctors’ orders for the last week and a half. I carry my cane with me everywhere now; not just when I feel like I won’t be judged. My boyfriend helped me adapt a small backpack to carry my infusion supplies so I can hang my bags inside and thread the tubes through my shirt to infuse on the go so that I don’t miss any more of my fluids. Yesterday I went for my second round of Botox for my migraines, which I had been trying to put off because this time I was going to have to go alone (my mother accompanied me for the first round) and this is 27 shots going into my head, neck, and shoulders. I have also begun to carry spare pill boxes to ensure that I don’t miss any doses of any of my medications; I even keep access supplies and half a liter of saline plus a Heparin flush in my purse at all times. I have recently begun using a small humidifier by my bed at night with an essential oil diffusor that releases a combination of lavender and peppermint oils for migraine flares. I’ve noticed that this has also lead to a change in my skin, in that it has begun to have a smoother texture. And of course, I have been constantly drinking my 128 oz. of water a day thanks to my 32 oz. Brita bottle.
Over the weekend I discovered that following these orders more strictly that there are actual measurable differences in my health. My resting heart rate has gone down to 74 when I meditate, compared to the previous average of 114. Fair warning of TMI, my urine has gone from almost brown due to dehydration to nearly clear every time. My blood pressure has begun to regulate itself again and is consistently at a healthy rate for someone my age as well. I hope to soon be able to resume my daily yoga practices and eventually get back to the gym for my weight training again. These tiny steps up the ladder towards homeostasis for me have been bounds for my self confidence. It’s now a measurable fact that little by little, I am stronger than yesterday.