A few weeks ago, I was able to go to The International Surfaces Event. This is the biggest tradeshow in flooring each year, held on the Vegas Strip. The Strip is one of my least favorite places in the world (Don't get me started on Their Astounding Lack of Efficiency), but I was giddy to be there. I hadn't attended this tradeshow since January 2020. It always requires miles & miles of walking and hours & hours of standing, and I just couldn't do it, after getting Long Covid. But this year, I was able to go. Granted, I did the Geriatric Version of Surfaces. And each day got a bit more difficult. But still, I was able to do it. And that was a huge deal. Simply because it was a measurable, tangible mark of progress. And it felt so wonderful to have that.
I was also deeply touched by those who were celebrating this little victory with me.
I am not Better, as far as being anywhere close to my pre-Covid baseline. But I am better than I was a year ago, and much better than I was two and three years ago. And that gives me hope, that I can continue to progress and get better, until I am Better. If you know what I mean.
I started a new test medication combination (an anti-inflammatory drug + an antiviral drug) that performed well in a research study done a year ago. They are conducting a new larger double-blind study on it right now. I'm not part of that study, but am trying out the medicine. I'm told that it takes about two months to know if it is helping, and I'm about one month in. So far I don't feel a difference. But I am hopeful that I will.
In the past 18 months, I've been part of 2 other medication research studies. For one, I was in the "control group", and for the other, I got the real thing. (Fun Fact: I hate being in the "control group".)
HERE'S THE BORING MEDICAL PART. People ask about my symptoms. So if you're interested, keep reading. If not, skip this part, and scan to the bottom. (It will NOT be on the written exam.)
I've explained this before, but as I start to launch into everything, there still remains a part of me that feels sheepish, overly sensitive to the fact that I sound a bit like a hypochondriac, and gearing up for well meaning but common questions, like whether I'm sure it wasn't the vaccine (A: Yes.).
Some people ask me if I'm sure my symptoms aren't simply due to getting older ("We're all tired!"), or the deconditioning that has occurred as a result ("You just need a good long walk outside in the fresh air."). I think that those things must factor in somehow into the mess, but the reality is, my continuing issues, typed out, will appear in every credible medical document and study about the disease. (Feel free to google at will.)
Some symptoms have improved, thankfully, but each improvement has occurred separately, and not from one single pill or regimen. Most everything boils down to the fact that Long Covid triggered a massive freakout in my system that made automatic functions like breathing, oxygen saturation, circulation and blood delivery wacked out. My mitochondria are underperforming, and doctors aren't quite sure why. Blood tests show that mono/EBV is in my system, which aligns with one theory that these latent viruses are reactivated somehow through Long Covid. (Fun Fact: I never knew I'd had mono. My mom's philosophy of "only go to the doctor if you are bleeding uncontrollably or a limb is hanging at an all new angle" carried over to me, and before Long Covid, I typically just tried to ride everything out.)
But, again for those interested, here's what seems to have helped:
Respiratory -- I struggled with low o2 saturation, and had supplemental oxygen for 9 months. I'm doing much better now, but still have a sensitivity response where catching a cold or going to a high(er) elevation can quickly throw me back down into the 80's. Most of the time now, o2 is happily 90+, and even can get into the high 90s. I still don't have the breath to sing an entire song, but I can sing a verse, sometimes two. (Singing in tune is a completely different matter.) What seemed to aid improvement with this is that I went to a breathing & voice specialist at the U of U Medical Center. She had me do exercises that seemed to eventually help my muscle memory "remember" how to breathe more deeply. I really should still be doing the exercises daily, but as I've improved, I've gotten a bit lazy with my regimen. I need to get back to it.
Ironically, I find that I sometimes miss my home oxygen machine. Isn't that funny? It was a way to plug in and feel better relatively quickly, rather than having to do the work of Deep Breathing.
Dizziness - Several factors here but biggest was POTS, and the best help for this has been wearing compression socks and/or tanks, drinking lots of water, and a med called metoprolol (sp?). I still really struggle at events that require long periods of standing (parties, receptions, viewings, tradeshows, etc.) Standing is much, much harder than walking. I thought it was just me, but my doctor explained it has to do with the fact that walking helps pump the blood and oxygen up as I move, whereas with standing, everything just drops and stays there.
Neurological - I have tinnitus and numbness less often than I did. I do still get brain fog, but that's one of the "is this age? hormones? or long covid?" things. I hear really sad stories of Long Covid patients whose brain fog is so bad that they can no longer work, drive, shop, etc. Fortunately, mine has not been at that level. Or if it is, someone needs to tell me, because I'm completely oblivious to it.
Fatigue and PEM crashes - I'm often asked what a "crash" feels like. After overexertion, (typically physical but can even be after intense emotional or mental strain), I feel like I get hit with the flu. Not like the stomach flu. The "Influenza A - every part of my body is aching, I can barely get out of bed, sore throat kind of flu". When it hits, I'm always wondering if I picked up an extra virus or flu bug, or if it's a Crash. But there are patterns that I can usually identify. Here's an article about this, if you're interested.
As part of a research study last August & September, I started taking something called oxaloacetate (sp?) and I feel like it helps a bit with fatigue. Crashes seem to not hit as often and last a shorter amount of time. Perhaps it's in my head. But it seems to help. The problem is, the medicine is horribly expensive, even with my clinic's discount code. But I still take it, because I think (??) it is helping.
As I have mentioned before, while not life-threatening, the fatigue and PEM have been hands down the hardest symptoms to manage. But after 50+ years of being a Go-er, I am clumsily learning to "Pace" and to be gentle with myself.
Whether intended or not, I've realized that growing up, I absorbed the message from my depression-era grandparents and hard-working parents that laziness was an unforgiveable character flaw. As an adult, that meant subconsciously I never felt "down time" was justified. It has been challenging to reconcile my new (or at least newly recognized) need for rest and a slower pace with the crusty Inner Coach in my Head, who impatiently hollers, "C'mon! Get Going! Quit Being a Wuss!"
Turns out, I had to learn to forgive my body for being weak and frail. This took time. Actually, I'm still working at it.
I also have this frenetic side of me that wants to try every diet, medicine, vitamin, holistic regimen, physical therapy, or advice of any nature that anyone and everyone suggests might help. Because I do desperately want to get Better. But I've also learned through trial and error that I have to do one thing at a time, slowly. Otherwise, all of the results get muddied together and it actually takes longer to figure out if it's helping or not.
All of this requires patience. And by nature, I'm anything but. So I have to tell myself to Chill, quite regularly. which brings me to my:
SPIRITUAL TAKEAWAYS - There is no question that I have been learning lessons from God along the way. It's difficult to explain, but I can feel Him changing my heart, little by little. I feel closer to Him. I feel His love and presence in a less diluted way.
I had a beautiful, uplifting conversation a few weeks ago with an amazing friend who has been on her own journey. We talked about the difference in having a transactional relationship with Jesus Christ, versus a deeper, covenant relationship with Him, and what that looked like.
The first year or two of Long Covid, once it became apparent that this disease was not going away and in fact was creating a chaotic and terrifying symphony of misfires throughout my body, I turned to the Lord. I prayed and pleaded for guidance, with great sincerity and intent. I felt like I was lost in the woods, not knowing where to go and which path to take. But I knew He understood the complexities of this illness, even if doctors and specialists did not. I desperately needed His wisdom and guidance. If I could just follow Him, He'd show me the way out of this miserable and dark and confusing place. So I sought to draw near to Him, so I could better discern which direction to go.
Then, over time, things evolved. I saw Long Covid as a daunting mountain that I had to summit. We all have them, and this was mine. I yearned to make it to the top and see the vista below me. I wanted and needed God's help to have the strength and stamina to conquer this gnarly mountain in my life. He is the Master Healer, and I knew He could help me, if it was His will. I sought Him sincerely, because I needed His strength.
But I think in both of those cases, although I didn't realize it, I was seeking a Transactional Relationship with God. If I could walk alongside Him, He would do this or that for me. It was part of The Deal.
I do not believe that it is wrong to turn to God for direction and discernment, strength and endurance. In fact, I believe He is always pleased when we search Him out, regardless of our reasons why. But my relationship with God has changed through this experience. As I said, it's a little hard to put into words. But I guess the best way to summarize is that I have slowly shifted from seeking His blessings to seeking Him.
Now, I simply want to walk with Him. Even if it's wandering in circles through a forest. Even if I'm still near the bottom of the mountain. Even if my oximeter is at 86 and my entire body aches and my limbs feel like they weigh 1000 lbs. Having Him by my side is enough.
It really is.
Because feeling Him near; feeling His love, grace and peace; feeling His gentle tutoring as I strive to become a more earnest and devoted follower of Him -- that makes everything Better. In the very best of ways.
