Like many of our church members, I spend my Saturdays preparing for our Sunday services. I have done that previously, but the nature of my preparation has changed since I was diagnosed with dysautonomia or POTS this summer. With a Sunday fast approaching I thought it might be a good idea to give a brief update for my friends, family and church members, that they might know better how to pray for Sundays. I also hope that my experience might help others who are wrestling with POTS feel some “fellowship in suffering”, and perhaps help them deal with the syndrome.
First, a bit of an update. I saw the doctor a little over a week ago, and reported on my heart rate with the beta blocker metoprolol succinate. The 50 mg dose each morning had been keeping my heart rate lower most days, although there were some exceptions, and my HR when when I was preaching was down from the 160’s to the 120-130 range. Dr. Hebert was pleased at the success, but thought that adding a second, 25 mg dose each evening might be even more beneficial. With this new regimen, my heart rate has indeed been even more moderate, only rising to the 90’s when I stand, and the last Sunday I preached, it was only 96! What we must be careful of (I understand) with the increased dosage is not getting my heart rate TOO low, but it has not been lower than 61 when resting thus far, which is very acceptable. So the metoprolol is doing very well for me!
However, the heart rate is only one of the POTS issues I have to deal with, and there are still numerous ups & downs. With my heart rate under control now, and the trazodone which has dramatically helped my sleep, I have not had another migraine, and I have been much more regular in my church office hours. Last week I worked 5 days, and was probably very close to actually working a 40-hour week. But even at that each day is an adventure.
For example, last Wednesday I got up in the morning, had my quiet time and rode my stationary bike, and went to the office feeling better than I had in some time. I even posted on Facebook about how well I felt, and that I was hopeful that it would lead to a “streak” of “good days.” But it was very short-lived! I did finish my Sunday sermon that morning (for which I was very grateful) but when I went home for lunch, a few minutes after I ate my face began to feel flush, and I started having waves of nausea. I went back to church for a few minutes, and tried to work, but I could not concentrate while feeling like that. I ended up going right back home and spending the rest of the day on the couch. So much for my “good streak”! With it happening right after lunch I wondered if it was related to that, of course — but I had made a point of eating a VERY small meal, so that it wouldn’t send to much blood from my brain to my digestive system. Plus I had a very similar thing happen the next day, WITHOUT lunch as the “catalyst”, so I do not believe it was food-related.
This is how my most recent week was: “spurts” of feeling very well, but then “waves” of the nausea and dizzines and lethargy of POTS. In my better moments I can read and study for Sunday’s messages, but in my worst moments I can’t read at all. It has been some time since I actually read a book of any substance other than my daily Bible reading, which I am always certain to do. I hate to say it, but when I really feel bad, for whatever reason, watching tv is one of the few things I can do. I have noticed that it is very distracting, and gets my mind off of the nausea — but as soon as I turn the tv off, my mind returns to how poorly I feel. I am grateful that I can be distracted, but the challenge is to find much worth watching on television! I am grateful for our newfound discovery of Netflix — and that college football season is about to begin!
It is amazing, even when I am feeling “better”, how some little things can just put me “in the tank.” For example, I have avoided being in the heat, as being in it for just a few seconds can be devastating to someone with POTS. I shared in another blog post (here) about how just walking from the car to the mall made me sick, and basically put me in bed for 5 days. I have had similar episodes which seem to have been set off by just walking from the car to the office, or to the house, in the Louisiana heat. This sounds extreme, but I am reading from POTS patients all across the country that heat is doing the same thing to them. This is one of the reasons why I totally “hibernate” on Saturdays, which I will touch on momentarily.
Some other “triggers” for bad spells have been exercise — and by “exercise” I mean walking a 20-minute “loop” around the kitchen, living room & dining room! — and doing some minor traveling. I drove to Lake Charles (about 20 minutes) for the first time a couple of days ago, and I was really “worn out” by the time I got back home. It is amazing how so many little things — things I never gave a second thought to when I was healthy — are very difficult, or end up being incapacitating to me now.
Which leads up to my Sundays. The early morning is one of the most difficult times for POTS sufferers. Many are advised not to try to make morning appointments at all; schedule everything in the afternoons. I NEVER feel good in the morning now. Even on what turn out to be “better” days, I don’t know it until I have gotten up and around for a while. I always start off feeling poorly. This makes it difficult, of course, since our church has an 8:30 early service in addition to our 11:00 worship service. I am committed to try to preach at both of our morning services, as they are the most heavily-attended meetings of our church, and minister to the most people. But I will tell you up front that doing so is a great challenge. I always feel fairly nauseated first thing in the morning, and food is repulsive to me then. But if I don’t have anything on my stomach, I am VERY weak for the services, so it is kind of a “Catch-22.” I usually try to force a bite or two down before the 8:30 service, and then what I have done successfully the past couple of weeks is to then send Cheryl or a willing deacon to Wendy’s to get me some breakfast to eat in between services, as I am often over my initial nausea by the end of the first service, and am then able to eat. With that sustenance, I am then able to preach the 11:00 service also.
It is still very difficult to preach. As I mentioned, my heart rate has been better with the increased dose of beta blocker, but even with that, and a good portion of Wendy’s potatoes and gravy, I am still very weak, and often I am literally leaning on the pulpit while I preach. A few times I have started to step away, to share an illustration or tell a story, but have felt like my knees were buckling, so I have headed right back to the pulpit! One or two times I was literally clutching the cross which forms the body of our pulpit, as I hung on for the closing prayer. A neat picture if you think about it!
Some have suggested that I sit to preach. This is a possibility, but it is not the panacea one might think. Even though the syndrome is named “postural tachycardia”, just the fact that I am seated instead of standing does not solve all my problems. I often still feel very poorly even when I am sitting down. In fact, sometimes sitting upright in a chair can be almost as bad as standing up. Relief from the tachycardia, headaches, and nausea don’t come unless I am totally reclined, like in a La-z-boy. As I told someone, I don’t think preaching from a recliner would go over big. Everyone in the congregation would want one! So although I have brought one of our kitchen barstools to the platform of the FBC worship center, I have not used it, and sitting in it would not necessarily make “everything better.”
Understanding what I face on Sundays leads to an explanation of my Saturday “routine”. I do review my message and prepare my notes, as I have typically done in the past. But the most important change I have made right now is that I am committed to total rest on Saturday, because as I have shared, I never know what little thing will “trigger” a bad reaction — a walk to the mailbox in the heat; a drive to town; even very minor exercise. For this reason I am committed to stay in. I do not leave the house on Saturdays.
This is why I have declined a number of invitations for events on Saturdays — many which I would have loved to accept. One which was painful for me to decline was praying at the Sam Houston football team’s pre-season banquet. I have prayed the opening prayer for that meeting as long as I have been pastor in Moss Bluff. I love the opportunity to fellowship with the people, and to share the gospel in the prayer. But I told SHHS coach Vaughn Eggleston I just could not risk getting out this year. He was very understanding. But I have turned down several church fellowships, birthday parties, church ministry seminars, men’s meetings, etc. I wonder if some people might think “This would only be 5 minutes; how could that hurt?” but they may not understand that “just 5 minutes” has in fact set me back quite a bit in the very recent past! I just feel like I owe it to our church to give myself the best opportunity I possibly can to minister in the most important meetings we have: our Sunday morning worship services. I look forward to being able to add to this later, but in the meantime I hope everyone will understand what is going on with me, and why it is important for me to take these precautions at the present time.
I trust that this article has been informative for those who wish to know more about my condition, and especially for those who want to know how they might best pray. I also hope that other POTS patients may find that they are not alone in what they are suffering, but might be encouraged by others who are fighting the same battles. I know I have personally felt better when I have read articles by others and thought, “OK, I am not crazy; this does that to them too!” God has a plan for these things (see my sermon on God’s purpose here and a brief devotion on that topic here). May God bless all of you who are walking with me in this same POTS journey, and those of you who are “holding up our hands” in prayer as we walk it.