99 Days: From Couch to Almost Normal Again
A pericarditis journey back to strength and better health (I hope)
Okay, first the disclaimers. I am not a healthcare provider of any sort, nutritionist, physical therapist, or physical trainer. I am simply a chronic pericarditis patient on the cusp of what I hope is my second remission.
Because there are so many more of us suffering from peri these days, due to COVID-19, I felt compelled to share my journey. If you or someone you love has ever been diagnosed with pericarditis, you are one of my people. I hope you’ll follow along here for the duration as I share what is working for me and what is not.
I booked a scuba diving trip for November
I was (am) terrified. I’m a travel writer, so it’s not that I haven’t gone on trips before — several times while in mid-flare. I just beg my doc for a steroid pack to get me back home if things go sideways (learned that on a 2015 trip to Italy, which could have ended badly had I not taken those little white pills along for the ride), make a plan to rest as much as possible, and hope for the best.
What scares me this time, though, is that I feel like I might really have a shot at remission again and don’t want anything to screw that up, including getting ready for and participating in a dive trip.
Hubs convinced me it was the right thing to do, though, by reminding me that we aren’t getting any younger and that the physical strength we gain from our annual trip to Bonaire (which we missed in January 2021 because of COVID shutdowns) extends our lives. And that even if it screws up my remission, I need to regain strength lost to both peri flares earlier this year and retina surgery that forced me to lie face down for nine days and restricted my physical activity well beyond that.
As soon as I booked the trip, I knew there was no time to waste. I firmly believe that with the inflammation of pericarditis always lurking, slow recovery is the only real solution. If you are looking for a super-fast bounce, you’ll have to look elsewhere. I’m doing this sea turtle-style.
Where I am right now in my recovery
The retina surgery I had in May forced me off of the regimen of 800mg of Advil three times a day. The surgeon was concerned about bleeding and insisted it must be stopped at least 10 days before surgery. I tapered down to 600 mg, then 400 mg, then dropped the mid-day dose, then the night-time dose, and finally the morning dose.
I felt the whole process was way too fast and would recommend if you have the option to do those steps spread over a couple of months. I had 20 days. I bolstered my immune system with lots of Omega-3s. I’ll have that whole story ready for you soon, complete with reference information to back up my theories about why those O3s are so important in the fight with inflammation.
I have also started reducing my colchicine, though I never expect to be off of it 100% again. I feel pretty strongly about its ability to help me maintain a tolerable level of inflammation and it does less damage to my body when taken at the proper dose. I know some people are unable to tolerate it, but for me, it works wonders.
I am on daily Kineret injections and also take 4.5 mg of Naltrexone. It has to be compounded by the pharmacy because its primary use is in the treatment of drug addiction. But at extremely low doses, it has been shown to act as an anti-inflammatory. Because it has virtually no side effects, I also plan to stay on it.
My last major flare was in March, following our horrific deep freeze here in Texas, which was physically grueling, and caused a month’s delay in a monthly Kineret shipment. That flare lasted the entire month of March and into April until the Kineret kicked in again.
Fitness-wise, I am able to stay up (as in out of bed or off the couch) for 10-hour stretches most days. There are days when it doesn’t work that way and I never push the limit. I learned long ago in this fight, that when my body says lie down, I do it.
I can walk slowly for about 15 minutes at a time most days without raising my heart rate over 100 bpm. I can push a half-filled grocery cart for 10–15 minutes. And I can put those groceries away when I get home.
I know all of that information means something to you if you are a peri patient because, for long stretches of the last decade of my life, I have not been able to do those things.
I have also been doing very modest strength builders all year. I started by doing one counter-top pushup per day in January. In February, I did two every day. In March, I stayed on the couch. In April I picked back up with four push-ups and added sets of four leg lifts while sitting, and four sets of curls with 2.5 lb weights.
In May, everything that involved lifting stopped halfway through the month for the surgery. In June and July, I began again in earnest. I walked more and bumped up my repetitions of pushups, leg lifts, and curls to match the month. This month, I’ll do eight of everything. I also have added time in the shallow end of a pool, walking, doing yoga poses, and stretching at least twice a week.
Don’t try to catch up to me too fast
If you are in the throes of a flare or chronic illness, don’t suddenly jump up off the couch and start doing what I plan to do for the next 99 days. It will make you sicker. For my remission in late 2015, I didn’t even start adding physical activity until I was completely free of symptoms and off all medications. By definition then, I’m not really working toward that sort of total remission.
My goals are to remain off of Advil and reduce the colchicine to .6 mg per day (which is the actual recommended dose for my weight), while building enough strength to go diving at least a few times on our trip without stirring up the beast again. In January 2020, I managed 10 shore dives, but I’m starting from a weakened state this time.
My purpose in sharing my day-to-day progress is to encourage you to take whatever small steps you can toward your own recovery within your own abilities. If you are not able to do any of the things I am doing right now, I want you to at least be encouraged at what might be possible for you in the future. Ready? Follow along using the links below.
Ready? Follow along using the links below.
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