Saturday, May 21, 2022

Temporary Insanity...A Story about Long Covid

I've written and rewritten this first sentence at least a dozen times. How do I begin? I have a fear that writing about this will send the wrong message. To be clear, I'm not looking to gain anything from sharing this story. Sounds cliché, but I just want to be helpful. A glimmer of light...a ray of hope...anything that might keep someone from giving up.

If you know me, you know I can't often tell a short story...but here goes it...

I got the dreaded virus back in early August 2021. At the time, I was under a lot of stress, and anxiety was kicking my butt. Without going into detail, I'll just say that several circumstances were causing me strife, and I was a bit of an emotional wreck. I'd experienced bouts like this before, but it had been several years since. The day the fever hit, I was doing ok. I had already been taking all my supplements and remedies because Soren had gotten sick just 2 weeks prior. I was strangely at ease that night as I lay awake with body aches and fever. I thought, "this isn't so bad." And it wasn't. I had a fever through the next day, and by the morning of day 3 I felt great. I cleaned house and even did outside chores! Day 4 I lost my sense of smell/taste and the congestion/cough started to set in. Anxiety started creeping again, but I rolled with it. I figured, "it's just got to run it's course." On day 6 everything spiraled. I had received some gravely troubling news from a dear friend, and I found I couldn't cope anymore. I wrote a prayer to God in my journal that night and I told Him I wanted to die. 

The weeks and months following that day were (insert worst adjective imaginable HERE). I dreamed of being committed to a mental hospital and forced into an induced coma. I couldn't even breathe normally. In that first week, it was like I was constantly mildly hyperventilating. I could not calm down. Could. Not. It felt like I was on a plane that was taking a nose-dive at an accelerated pace...but I never reached the ground. I knew I was being irrational, but thought that this must be what it felt/looked like to be insane. I kept telling myself to "get it together!" I messaged my doctor out of desperation and reluctantly got some medication. My hope was that I could just ride it out and not have to use it. That same day I contacted another doctor in the hopes that I could find some sort of alternate option. By the grace of God, they had a cancellation the very next day. That appointment was a glimmer of hope. Maybe my electrolytes were out of balance? Maybe the virus had depleted some minerals? He armed me with some supplements and I was on my way. 

As soon as I got in the car I took all the supplements he had given me. I hadn't really eaten much in days, so thankfully they could all be taken on an empty stomach. Within minutes my body tingled all over, and eventually I could feel a bit of a calm come over me. Finally, a bit of relief. If only that was the end of the story.

Unfortunately, all the symptoms I was experiencing escalated that very night. Synnove (the last to get the virus) got a bad fever and was absolutely miserable. I did what I could to help her despite myself. Adam, though still recovering, slept downstairs so he could watch over her. I was exhausted from several nights of little sleep and hoped that with my new supplements I'd be able to calm enough to get some rest. I fell asleep for a short bit, only to be woken in the middle of the night by unexplained panic that turned into a full blown panic attack. 10 hours later, another full blown panic attack! "What on earth is happening to me??!!" I honestly thought I was just crazy and that my body was just overwhelmed with stress. I had no idea that this could be related to the virus.

The days were torture. I was completely non-functional. I couldn't read, watch TV, be on social media, listen to podcasts, or do much of anything around the house. I couldn't concentrate or be distracted by anything...there was only constant panic...all day every day. Showering was somehow terrifying, and baths were completely out of the question. I couldn't stand the dim lights in the house. I slept with the light on every night for months. I could only manage to eat bananas and toast and I only ate when I absolutely had to. I was so claustrophobic that I couldn't be in the house with the windows closed. I literally could not sit down during the day, in fact I don't think I actually sat in the living room for any period of time for over 2 months. All I did day after day, hour after hour, was pace back and forth outside and pray. The various supplements that initially helped no longer helped. Even the medication was virtually useless during the day so I just didn't take it. My body seemed to be calmer in the evenings, thankfully. I could at least sit in my bed and write in my journal...but sleep was near impossible. I had to sleep somehow, so medicating at night became routine.

I had blood tests. Everything came out normal, or only slightly off (nothing that would explain the mess I was in). I was so frustrated. New symptoms were developing amidst the never-ending panic feeling. My heart would race at random, but mostly in the morning (every morning). There was no stopping it! One day my heart raced so much my chest was sore for two days after. My resting heartrate was perpetually over 100 bpm. After about a month of this nonsense, my body started to shake. At first it would only shake in the morning, but eventually I just shook all day. You couldn't actually see the shaking, but I would feel it in my body. If I tried to lift even a glass of water you could see the shake...but otherwise it was internal. It was like I was buzzing like an amp that was turned up too loud. I continued to cough for at least 2 months, and in the midst of that my throat started to have spasms and it became difficult to swallow. I had a strange jaw and tongue tightness that would come and go. It's hard to explain, but it felt like my jaw and tongue muscles were flexed somehow, but for no reason. My ears started to crackle and ring incessantly. Noises became greatly amplified. I couldn't eat anything with a crunch...it was deafening. One night I was woken by a tremor in my arm. It felt like my muscles were dancing from shoulder to wrist. It lasted about 2 hours. Every day seemed to welcome something new.

About 3-4 weeks after getting sick, I finally made the realization that I wasn't actually crazy. The virus had attacked my nervous system and I felt powerless to conquer it. No amount of therapy, deep breathing, or meditation was going to calm me down. I was stuck in a constant state of "fight or flight." I did a saliva cortisol test about 5-6 weeks in and discovered my cortisol levels were extremely high until evening. The pieces were coming together and my bi-monthly (sometimes weekly) doctor visits were very helpful. Trial and error, and more trial and error. The process was painfully long. The doc told me that I was basically a guinea pig...a pioneer for learning about the various symptoms of Long Covid. But my symptoms didn't fit into what seemed to be the typical Long Covid mold. I didn't have the fatigue or brain fog, I had the complete opposite! 

Towards the end of September, after lots and lots of prayer, and lots of research (of which I could only manage so much of in my heightened state), I started to make some slow progress. New supplements targeted at stopping the attack on the nervous system were noticeably helping. I wasn't great by any means, but I started to be able to sit for short periods in the day. I could watch one TV show (only in evenings). I could only tolerate non-drama reality shows...so I only watched veterinarian shows...haha! I was still mostly pacing all day outside, but I could sometimes sit in the grass for a bit. I also managed to do mindless tasks like laundry and dishes. But the days were still so very long because I couldn't do much of anything to pass the time.

By early October, I felt it necessary to wean myself off the medication that was helping me sleep. Because of the moderate success of my new supplement routine, I thought I could try to manage sleep on my own. I'd been using the medication for 7 weeks and I took the next week and a half to slowly taper until I didn't take any. It seemed I was doing ok...until I wasn't. I landed myself in the ER and then proceeded to spend the next MONTH detoxing from benzodiazepines. It. Was. Hell. Let's just say there's a reason why people don't often successfully come off of benzos without going to rehab. The perpetual anxiety went into high gear, the weather went sour, and the constant pacing resumed in the house for the next two months.

Fast forward to December. The anxiety/panic feeling was finally starting to feel diminished. I was still shaking, still had elevated heart rate, and still had all the other annoying physical symptoms. But with the anxiety leaving, depression set in. Deep depression. From perpetual panic, to perpetual sadness. I couldn't shake it. I had no reason to be so sad...yet there I was. Seemed I couldn't win. I realized my nervous system was trying to balance. Being in a constant state of fight or flight for 4 months had taken it's toll, and my nerve receptors were also damaged from the medication. It was going to take time and new supplements. You should see my amazing supplement collection!

Christmas came and I managed to survive the family gatherings. I gradually started eating normally again (I had lost roughly 25 lbs), and as of today I've gained most of it back (boo!!).  I spent most of my kids' basketball season slowly re-entering society. It wasn't easy. I went to the games, but any sort of smile or "hello" was difficult. I had to fake it. I went to church and would attend the potluck dinners, but I'd have to take a separate car and leave early. My ears were so sensitive to noise that I almost resorted to ear plugs...but I didn't want to draw any attention. I didn't want to answer questions. I was in a lonely place...didn't feel that anyone could truly understand what I was going through. It still seemed I was a bit of an anomaly. I had heard of people experiencing similar symptoms to mine post-Covid, but nothing as prolonged or severe.

In mid-February I met up with a friend who had been battling Long Covid for over a year. Her symptoms were more typical, but I was curious if she had found success with any treatments. By then I was doing quite well. I felt I was probably 85% recovered. She suggested I join a FB group for Long Covid sufferers. To be honest, I wasn't really excited to join a group where all the people constantly complain about their ailments. However, I wanted to see if there were others like me. I wanted to see if people were having success with treatments I hadn't heard of. I wanted to get to 100%!

I joined, and though they were much fewer, there others who were fighting the same battle I was. These people were desperate, and they are still desperate today. The suffering is unbearable and yet they feel shamed by their friends and family who think that they are making things up. They are dismissed by their doctors and told they just have anxiety. I was one of the lucky ones. I was blessed with friends and family who listened and checked up on me daily. They may not have understood, but they were there nonetheless. I was blessed with a husband and kids who did everything without me. They took up every bit of slack, and did it with grace and love.  I was blessed with those who prayed for me from afar, in person, through video chats, and phone calls. I was blessed with the ability to work with a doctor willing to try, try, and try again. I was blessed with a faith in God that is now stronger than ever. He's the only reason I made it through each day...truly. I'm not sure I'd be alive today without Him. 

The Long Covid group I'm in has over 53,000 members. That's a staggering amount of people. I've been personally contacted by a few whose symptoms fit mine. These people are so excited to hear what I have to say. They are in the thick of it and need support. A few weeks ago I was connected with another person locally through a mutual friend. She feels alone...shamed...crazy. How many more are out there? How many of you are silently suffering because you've been gaslighted?

The shaking finally stopped in early March and I was able to start light exercise a few weeks later. The stress wreaked havoc on my body and I lost much of my endurance, muscle tone, and at least 1/3 of my hair volume. Today I'm probably at 98%...and I've been stuck here for close to 2 months. That means it only took 7 months for me to be almost fully recovered. 7 months may seem like a long time. It was. It felt like eternity. But there are people who have been suffering with this for over 2 years. I just can't imagine how I could have endured 2 years. 

Hear me, and hear me well: if this is you, you are not alone. Email me (nicolelouiseb@hotmail.com), text me, message me on FB. I want to encourage you, pray for you, pray with you, listen to you, and love on you. If you are a Long Covid sufferer and aren't making any progress, I may have ideas for you to try. I believe my experience was extreme, but I also believe that I was guided on an expedited path towards healing. Only recently did I discover what form of nervous system dysregulation I was likely experiencing (read about it HERE). It all makes a lot more sense now. Let me help you...let's make sense of it together.