I know sometimes it’s hard for family and friends of chronically ill people to understand how we can’t make plans…or keep them, when we’re just sick at home. I did some pieces on LymeBites about a day in the life of Lyme, but have been discussing this more recently with people. Like one of my best friends said before reading my piece on LB, she just thought it was like being home sick in bed with the flu all day. But it’s not….it’s so much more than that.
As an example I’m using my medicine alarm that is on my iPhone. You may say “let’s go and do such and such at such and such a time”, but not realize how much goes into one day of just medicine for a Lyme patient.
I average about 63 pills a day, that is all dependent on my “as needed’ meds. In addition to the pills, I have 2 medications that are taken by dropper, both twice a day. I have one powdered supplement that has to be mixed with water and taken 3 times a day. I have cleanse and nutrition shakes that have to be mixed with water and taken at least twice a day (3 a day if I don’t eat food), as well as a magnesium tea that is made with boiling water, and a neurotoxin “binder” that has to be mixed with orange juice and taken twice a day, but you can’t take other medicines for 4-6 hours after taking this drink. That’s my basic, generic day. Not including pain, anxiety or nausea meds. This all doesn’t include the hour long intravenous infusions of 2 grams of super powerful antibiotics that are pumped into my heart 5 days a week. The other 2 days a week are spent keeping the line clear of blood clots, requiring saline and heparin flushes twice a day.
This is the schedule of my alarms in my med app, and I hope it helps people to understand “it’s not you, it’s me” when the timing is wrong, or I’m too tired to do something. It is a lot of work to keep up a protocol, and I’ve been making a very strong effort the past 2 months to follow the protocol as much as possible.
10am – 13 pills, Morning meds on empty stomach, no food or drink for 1 hour after taking, or 2-3 hours before taking them.
10:30am – 20 drops of medicine from a dropper
10:30am – Powdered supplement mixed with water to be drank with 8 ounces of water
11am – A detox or nutrition shake, 2 scoops shaken with cold water
11am – 11 pills, Morning meds that are to be taken with food
12pm – 2 droppers full of medicine to be taken under my tongue and held there for 2 minutes
1pm – Powdered medicine mixed with orange juice
4pm – A detox or nutrition shake
2pm – 2 grams of IV medication infused over an hour
6pm – 6 pills to be taken 1 hour before eating or having a shake
6:10pm – Powdered supplement mixed with 8 ounces of water
7pm – detox or nutrition shake (or food on the rare occasion I have an appetite)
7pm – 1 pill to be taken with food
10pm – 2 droppers full of medicine to be taken under my tongue and held there for 2 minutes
11pm – 18 pills, Night meds
11:15pm – 20 drops of medicine from a dropper
11:15pm – one scoop of magnesium in boiling water for magnesium tea, to be taken 1 hour before bed for calm muscles during sleep
11:15pm – Powdered supplement mixed with 8 ounces of water
12:30am – Powdered medicine mixed with orange juice
All i all that is 18 alarms a day to keep me on schedule. And when you look at the times, you can see how it’s very hard for me to get away from the house for long without packig p beforehand, which can be very exhausting. Especially the mixed drinks that have to be made and carried in a cooler.
Just an educational email for those who understand, but don’t quite realize what the day is really like. Hope this opens up your eyes about me, and others with chronic illness so that you can be more understanding of those who are suffering.
Love and health to you all,