Apologies for dropping out of the Spark-iverse as I have, but this has been a month of torture. I haven't had anything of value to say to anyone. Although I have much that I could rant endlessly about, I haven't had the energy to do that NOR could I see the benefit in passing along all of my bottom-feeding, soul-rending, deeply dark and cruel bashing of myself and the whole wide world.
I have been very, very hard on myself. And made it harder yet by shutting out the world, aside from a few close friends, family and therapist.
Let me try not to get too lost in the details:
May 19th: Remember that slam-dunk appt. I was going to have with my electrophysiologist? It was anything BUT! A major upending in my understanding of my cardiac condition occurred: previously I believed that my slow heart rate was a subset of my atrial flutter. Since my pacemaker was controlling my heart rate, my flutter was under control too, right?
Wrong, wrong, wrong...! These are two separate conditions. Therefore controlling my heart rate offers no assurances that my atrial flutter is controlled. The cardiac ablation was done to control the flutter, but it offers no guarantees that the flutter may return at a later date.
How did I get this wrong? As my therapist said: we sometimes "hear" things the way that we want to...I had to have a reliable solution to the flutter and a reliable method for knowing if it returns.
How will I know if the flutter returns? I already know that I've been pretty oblivious to sensing trouble with my heart. I previously thought checking my heart rate was a means of checking the flutter. Not so. The only way to reliably check for the flutter will be routine EKG's or through the pacemaker readings which I'll be doing every few months.
Therefore, with the potential return of the flutter comes the potential risks of the pooling of blood and the risks of clotting.
Hello anti-coagulants: there is no way to discontinue them without assuming some risk of throwing a clot due to an unexpected return of the flutter.
Goodbye cycling. My world just came to an end. All the dreams & schemes of being able to savor the utmost feelings of freedom and joy by hitting the open roads on my bike and 30# of necessities...they just went up in smoke. I felt like someone just clanged an immense, impenetrable door locking me into what felt like the jail cell my life had become.
I got very ugly & Grinch-like, detesting and cursing sunny, blue skies. Remembering commutes through chilly morning fogs and cursing those too. Seeing cyclists everywhere and my heart sinking in despair. I didn't like myself very much, realizing at the same time while having such nasty impulses that in the scheme of things I truly am very fortunate and could have far more difficult health challenges to face and I know many of you out there in the Spark Community have been tremendously inspirational in overcoming such hurdles. So I beat myself up for having such thoughts!
Fortunately BEFORE I attained this more accurate and disturbing understanding of my condition I was able to join in with my bike club's annual Great Finger Lakes Bicycle Tour...not riding, but offering SAG (Support And Gear) services and joining in with roaring campfires, playing my guitar and on the 2nd night having fun joining a drumming circle...no drum handy so I beat my guitar like a drum...lol! I was able to enjoy myself somewhat as I didn't yet have the knowledge that my flutter could return and my need for anti-coagulant may be lifelong.
I also was able to join with DS in a road trip for a long weekend out to MI to spend with parents and other family members.
To better understand the depths to which I've sunk let me share also a very crazy-making symptom that has been simultaneously plaguing me: fatigue! Inexplicable, inexorable, inescapable...I have been passing on most of my workouts these days...yielding to the "meh" that has been tugging away at my soul. I once pushed myself into a spinning class...it was like "Zombie" Spin....no shortness of breath, no muscle soreness, just felt like I was barely able to turn the wheels in the overwhelming undertow of my life.
So let's throw a couple of serious health problems of other family members into the mix also shall we?
Oh, and how about a refrigerator that gives up the ghost resulting in tossing out hundreds of dollars of food and icing down in coolers the little bit we were able to salvage? The new one arrives next Monday...
I followed up with my electrophysiologist again to talk about my fatigue and he could not see anything un-toward with both my EKG and echocardiogram. The only thing he could offer was that perhaps setting my heart rate at 60 was too low...how about juicing up my heart by bumping up the pacemaker to 70?
Sure, I'll try anything! But given my past obliviousness to my cardiac functioning I wasn't optimistic. And no, there hasn't been any improvement.
Finally today a light bulb: A while back with this heart problem I had started taking Ramipril. Recently I had been light-headed at the 10 mg. dose so it was reduced to 5 mg. But I still had a few of the 10 mg. pills left so I spaced them out to like once a week, cheapskate that I am, couldn't just throw them out.
But I noticed on my first day of the higher dose my energy REALLY tanked. So I began to wonder.... Google is my friend, right?
Whaddya know? Ramipril side effects:
---dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
---unusual tiredness or weakness"
Reading this I realized too how scattered I have been feeling also, struggling to hold onto all the zillion bits of my life in as tight a manner as I'm accustomed to. Feeling very, very "off."
So I'm feeling some hope of being able to "experiment" with Ramipril and at least pull out of this deep trough in the not-too-distant future. I am hugely missing the ability to enjoy moving my body, to feel the usual depth of my emotions and music! I've nearly completely lost the ability to lose myself in my music!
The other dilemma awaits: do I give up cycling? Or do I allow some cycling in a limited, more cautious fashion? Just the thought of cycling and setting limits causes my heart to sink...cycling always brought a "sky-is-the-limit" feeling to me! It's time for me to explore other pursuits...perhaps yoga, perhaps jogging more, perhaps...but it takes energy to care, to push forward. Today I noticed after resting my hands in my lap how aware I was of the energy it would take to lift them out of my lap. Not that I couldn't do it, but it would be a noticeable effort. Not that I couldn't mow my lawn, but it would take a lot more time as I would be slower and more tired than ever afterward. This has also been part of the reason for my lack of blogging or joining in with other discussions here among our SparkFamily.
I'll be back: I know there is a rebound buried in me that I'll be able to excavate in due time. I'll catch up with you all then or perhaps here and there along the way...