This month marks a full year since my first bout with COVID, and six months since my second run. To many, the virus that ruled our lives for years is "old news". Though it's still rampant, it's not all we talk about. Which is a good thing! But unfortunately, it's not going completely away anytime soon. And for some of us, it's been a much bigger deal than for others.
We all know by now how unpredictable this virus can be. Some have, very sadly, lost their lives, while others have endured no more than a sniffle. And there has likely been plenty who were asymptomatic all-together. Despite that uncertainty, I've been very cautious since the inception of this pandemic because of my compromised immune system.
Thankfully, I've had the opportunity to work from home since this all began, which as I blogged about at the start of the pandemic, has been such an amazing blessing and help to my health. As an Event Director, my job changed tremendously in 2020, with in-person events becoming nearly non-existent. That year, and even in 2021, most of our gatherings were either cancelled all-together, or transitioned into virtual events (not my fav to plan, by the way!). On the plus side, that meant I was able to avoid large gatherings, and, in turn, many of the things that affected me on a regular basis even before the pandemic, like environmental triggers and physical burdens.
I thought I lived an isolated life prior to the pandemic, but my way of life the last 2.5 years has blown that out of the water. I hardly ever leave my house. On average, I step outside the front door maybe twice a month - sometimes less than that. We have our groceries delivered, my husband usually does the preschool transportation, and we very rarely do anything socially. Aside from a few work & social functions, the only people I've seen in the last few years have been my own family.
Last July, we traveled to my hometown in Eastern Washington to celebrate my Grandma's birthday. Unbeknownst to us at the time, someone in my family had the virus....and infected at least 8 others, including myself. Thankfully, the symptoms didn't hit until after we arrived back home. I didn't even take a test, because so many had tested positive, and my symptoms were the same.
I'm not going to lie, I was pretty angry about getting it, because I had been SO careful for over a year, and I just knew it was going to be detrimental to my ongoing battle for health. I was also devastated because my sisters and I had planned a getaway for the following week for my (and my twin's) 40th birthday; our first ever trip together as adults sans kids. All 3 of us contracted the virus, so we had to cancel.
Side note: we made it happen last month - a whole year later - and it was wonderful!
Though it was almost 100 degrees without AC and that was ROUGH!
Back to the illness; I didn't know what to expect, but I think it's safe to say that the outcome was worse than I had imagined it would be. I didn't leave my bed for an entire week, other than to use the bathroom and take Epsom salt baths. Let's not forget that I deal with feeling like crap nearly every day, and can push through the worst of things on a regular basis (mostly with a smile on my face!) so the fact that I could hardly move meant it was BAD. Like many who had the Delta variant, I dealt with things like a constant piercing headache, major fatigue and other flu-like symptoms. And of course I lost my sense of taste, which was weird, but nothing to write home about.
The worst part for me were the killer body aches, and the cherry on top - my Lyme pain intensified more than I've ever experienced in my life. It's hard to explain what it's like to anyone who hasn't dealt with this; I honestly can't even really put it into words. I often think it must be similar to the pain that cancer patients sometimes deal with; bone crushing, radiating HELL. I literally wanted to die, and even thought of ways I would do it. There's almost no escaping or alleviating it, and every second feels like an hour when you're writhing in that much pain.
There were a few savings graces. One, somehow both my husband and my daughter avoided contracting the virus. There's nothing worse than taking care of someone really sick when you're really sick yourself, am I right?!
Two, I had Ivermectin on hand from a previous parasite treatment I had done, so after consulting with my doctor, I started taking it STAT. Though my COVID-induced Lyme symptoms were still going strong, I did start feeling a little better almost immediately - especially with the flu-like symptoms. I could get on my soapbox here, but all I will say is that Ivermectin is backed by many of my doctors, absolutely helped my COVID symptoms, and it's helped everyone I know who has taken it for COVID as well. I tried Quercetin, but that made my insomnia worse. I also increased all the good vitamins in my arsenal like zinc, Vit D3, Vit C.
By day seven, I was starting to feel better and was able to venture outside of my bedroom and eat a little more than just toast. Most of my symptoms had subsided, though I was still very fatigued, felt like passing out upon standing, and that blasted headache persisted. I've been dealing with a lot of neurological/head issues over the last few years, which I will go into more of a bit later, but COVID seemed to have lit a match, because those symptoms absolutely exploded around the one-week mark.
I remember laying in the tub and starting to feel this incredible drainage in my head. I immediately got this awful, toxic taste in my mouth, as if I swallowed a bowl full of straight chemicals. That night was so miserable. My intense Lyme pain was back, and I endured more neurological stuff that's hard to explain - a skin crawling feeling that gave me so much anxiety I had a hard time breathing. I just felt so damn toxic! And all I wanted to do was sleep it away, except my body wouldn't sleep either. Utter misery.
Ten days later, I started having intermittent chest pain, pressure, and some shallow breathing. This was a brand new symptom for me, and knowing how COVID has affected others, I was concerned about blood clotting. I went to urgent care, and though they were turning people away left and right (which is so crazy to me!) they took me in due to the nature of my symptoms. EKG showed a wave of abnormality but "nothing to be concerned about". The attending told me it could be acid reflux - which brought be back to all those days in the beginning of trying to find a diagnosis to all my ailments. Like when the gastroenterologist told me I was probably just "chewing food too quickly" when my stomach had been the size of a watermelon for a year and was an absolute mess. Anyway, I know this chest pain was absolutely a side effect of COVID! I asked if I should be concerned about blood clotting, and was told I'd need to go to an ER for that. Well, ok then!
I ended up getting bloodwork through my Lyme doctor, and it came back normal (surprise, surprise). Irritation to the lung lining from COVID was a possibility, so we did a natural lung treatment for a few months, which seemed to do the trick. It took about that long to not feel super out of breath when climbing stairs, or for that feeling you get when running in cold weather to dissipate.
Into the Fall of 2021, all of my COVID-related symptoms were gone, but my Lyme stuff seemed much worse. I was getting sick all the time and my nervous system was going haywire, more than usual. The head symptoms were relentless, and I had horrible insomnia and things like increased sound sensitivity and major fatigue. Oh, and by the way, preschool was closed for about 5 weeks during that time due to the pandemic and snow closures, so that was super fun. Well it was, and it wasn't. ;)
Then in February, my husband got COVID, and two days later, I got it again. Needless to say, I was TICKED (no pun intended). I don't even know if I had left the house since Christmas, and I was obviously still dealing with things from the first round. Our five year old also got it this time, but thankfully all she had was the sniffles. My husband is super healthy otherwise, but had a relatively rough go of it as well. Of course, we know men don't handle sickness quite like we women do, but still not fun for anyone. Sorry guys, but it's true. The second round for me wasn't quite as bad as the first, but it was still pretty hellish.
At first, I just had cold/mild flu symptoms, and I convinced myself it would be easier because of my first battle. But then that horrendous Lyme pain set in again. I've been through some really painful things in my life, but I'd say this is second in line to child birth. NOT FUN. Even the Epsom salt baths didn't help this time, so I just had to lay in bed and wish my time away. Thankfully, this particular pain only lasted a few days this time. Also thankfully, my mom drove across state to take care of our daughter for the week, which was a huge blessing. It took me a good ten days to get over the fatigue, body aches, head & stomach stuff. I didn't lose my sense of taste this time around, and the lung issues weren't as bad as the first time, either.
Now, for the lasting symptoms.
In general, COVID has set me WAY back in my healing process. Last July, just a week before contracting the virus, I experienced a miracle healing. My pain was better, and my test results showed an amazing difference. But then I got COVID, and not only did the pain and all my other symptoms come back, they came back worse than ever. Test results since have shown that a lot of the coinfections and other viruses & toxins are still gone, praise God, but I'm still feeling worse than ever.
In January of this year, I started a 6-week gut repairing program which included eating a paleo diet (which I had tried before, but not so all-encompassing with other healing techniques). Through weeks 2-4, I started noticing a slight difference in my pain levels. My inflammation was down a bit and my clothes were finally fitting better for the first time since I stopped breastfeeding 4.5 years ago.
I will always remember President's Day 2022 as one of the best days I've had in SO many years. I was able to join my family in an all-day excursion - traveling to the next town over, eating out, checking out a "chutes and ladders" park (which included going up and down 6 flights of stairs & slides), going to a duck pond, and stopping at a store before heading back home. Normally, even one of these activities is super challenging for me, and puts me on the couch for the rest of the day. But I did it all with almost NO PAIN!! And when we got home, I was ready to clean the house, cook dinner and do more! It was the most amazing day I've had in at least 8 years, and I was ecstatic that the diet was finally helping me get to experience the life I have been longing for! Pure JOY that made me realize how little of that I've had in my life the last 10 years.
But around that time is when I had COVID Round #2, and the relief I experienced disappeared as quickly as it came. I stuck with Paleo for over four more months, determined to get that relief back, but to no avail. Instead, the opposite has happened. I'm more inflamed than ever. I feel like I'm gaining 10 pounds a month & look more pregnant than I did when I was actually pregnant, because the distension is so horrible. Every part of my body is so miserable.
One of the most obvious affects COVID has had on me, are to my hormones. I've always had issues with this - super low progesterone, high testosterone, high estrogen, and my adrenals are all over the place. I also just found out a few weeks ago that I have Hashimoto's Disease on top of everything else. Lovely! My doctor recently told me they have been seeing that COVID is completely tanking adrenals, and I've definitely noticed that in myself.
One of the worst changes, has been to my menstrual cycle. Before this, despite all my hormonal issues, I had a pretty regular cycle - average length, average number of days. After my first round of COVID, my cycles were all over the place. Super early one month, super late the next. By January, I was seeing Aunt Flo every two weeks - and that lasted for about 3 months! It was awful. I've been using essential oils to regulate, and things have been much better - but still not back to normal.
As I mentioned earlier, one of the worst issues I've been dealing with for a long time now are neurological/head symptoms. The head pressure/pain & intense dizziness started about 4 years ago, and COVID exasperated it all immensely. I'll have days where I can hardly keep my eyes open, and often times the dizziness also causes intense nausea and stomach upset.
I constantly have a sore throat - this year I had one every single day from the start of January to about the end of April. I have such an excessive amount of mucus in my head that won't drain no matter how I treat it. It's painful and uncomfortable. I'm constantly swallowing to try and clear the mucus, but it just stays stuck. Sometimes I get panic attacks because I feel like I can't breathe. Just a light touch anywhere on my face is super tender. I firmly believe the sinus stuff is mostly due in part to the moldy condo we lived in for several years when we first lived in Olympia 10 years ago. But COVID has certainly not helped.
On a side note, in December, I made the mistake of getting a crown on a tooth that was causing intermittent pain and sensitivity. Now it hurts all the time. The dentist recommended a root canal, which I've since learned is an absolute "no-no" for Lyme patients. I can't afford to go to a biological dentist, who knows how to work around Lyme, so I've just been dealing with the pain.
In March of this year, I started experiencing the worst jaw and tooth pain I've ever had in my life; throbbing, aching, and radiating down the entire side of my face. I focused my lymphatic massage on that part of my head every day, specifically in my TMJ area, and three or four days later, it was gone.
But then three weeks after that, it came back even worse than before. I couldn't even eat or open my mouth; it was torture! Eventually it went away, though I still deal with the tooth pain every day, and my jaw muscles get tired almost every time I eat.
One thing I've learned, and sometimes forget, is that the spirochetes love to live in our mouths. I've dealt with so much tooth pain over the years, that has come and gone, to which no dentist can explain. But this was on a whole new level. I know the crown was a major culprit in a lot of my mouth anguish this year, and am majorly regretting it, but I also think COVID didn't help.
In relation to my sinuses, I also have MCS (Multiple Chemical Sensitivity). I've posted about this before; how sensitive I can be to all chemicals - perfumes & colognes, car exhaust, cleaning supplies, smoke, the list goes on. Unfortunately, my sensitivity has increased tenfold within the last year. All it takes is a few seconds of breathing in a toxin, and my body flares like crazy. In less than a minute I get an intense headache and my sinus issues worsen significantly. My Lyme pain skyrockets, and my body feels so wiped out that I'm stuck on the couch for hours, if not the rest of the day.
It's gotten to the point where I feel like I can't go anywhere. Just driving on the road behind other cars makes me so sick. I got a new area rug for my birthday, and even after airing it out for several weeks and treating with natural substances, I can't go anywhere near it. At our golf tournament last month, I took a sip of water from a Gatorade jug that even other people said tasted like chemicals. I'm not sure what I was thinking - other than the fact that I was in charge of the event and needed to fix the problem - but I was SO sick after that one sip, for the rest of the day.
Our house is relatively clear of toxic chemicals, but even things that didn't bother me much before are making me ill. Like just washing the dishes with Dawn soap affects me now. Last week, even my daughter's clothing after being at preschool set me off. Yesterday, the HOA landscapers came by with their leaf blowers and the fumes got into our house and, again, made me so sick.
For fun, here's a graph that shows a test I took for chemical severity, that shows how my body is affected.
As with everything Lyme-related, it's also tough to deal with the fact that no one understands what I'm going through. Especially since my symptoms are all invisible. The responses I typically get when I mention my MCS reactions are either being totally ignored, or receiving an eye roll, or even a smirk or a laugh. I get that it's tough to empathize when you don't understand something, but it's still hard to be on the receiving end of that.
Many many years ago, before my illness majorly declined, I used Scentsy wax melting plug-ins in my office (which I absolutely cannot handle now). I remember a co-worker asked me to stop using it because it was really bothering her. I'll be honest, I was annoyed! I probably thought she just had an aversion to smells and didn't think about how else it may be affecting her, which I'm sure is what most people think. I sure wish that's all it was. I'm part of an MCS support group in Facebook, and the stories I read from others - how even family and close friends treat them & their symptoms - are absolutely heartbreaking.
Almost worse than any of the above is what I've been experiencing since the end of June. What's not new to me, is feeling flu-like when I don't actually have the flu. This happens all the time with Lyme. But usually there is a reason for the flare. For me, that's usually a full moon, my time of the month, or some environmental or food related exposure. Sometimes it's random, but usually only lasts a few days at a time - no more than a week.
This time around, it's been happening almost every single day for months. I get incredibly overheated and fatigued, with awful body aches, and intense joint pain and stiffness. And, of course, my Lyme pain flares - not as intense as it was during COVID, but somewhere in between that and my normal pain. I can hardly function. It's a good thing I rarely have to leave my house anymore, but it's still making life so incredible difficult.
The worst part is that I can't figure out why it's happening, and nothing helps alleviate the symptoms. In the beginning, it didn't hit me until the afternoon, into the early evening, which was super weird. Most recently though, it's been happening at random times all throughout the day. And I'm starting to wonder if it's related to my MCS and exposures. I'm actually beginning to think that my liver may be a major culprit to a lot of the above issues. I'm going to start tackling this with an acupuncturist next week.
So back to the start of the pandemic. While I don't agree with the way the world shut down, for myself, I was happy to be holed away at home because of my compromised immune system, and because I knew that COVID would not treat me well. I was especially worried about getting "long-haul COVID". At the time, I didn't really know what that meant - but I knew it would be bad if I got it. I've had a few doctors tell me I probably have it, but what does even that mean?!
According to the CDC, nearly one in five American adults who have had COVID-19 currently have chronic symptoms. I can't help but wonder, though - is it "long COVID" or are these people actually battling an underlying illness that became worse from C-19?
One thing I noticed last summer when we had a large number of family members hit with the virus, was that those of us with very compromised immune systems - and who are often more sick in general - were hit way harder than those who are relatively healthy on a normal basis.
I recently read about a study done with patients in Europe, where they took 31 severely ill COVID-positive patients, and 28 mild or asymptomatic patients. They compared the severe and mild COVID patients to 28 seronegative COVID individuals as controls. 31/31 patients hospitalized for COVID disease, and 19/28 patients with mild or asymptomatic COVID were positive for Borrelia burgdorferi (the bacteria that causes Lyme)! From the negative-COVID control group, only 8/28 were found to have markers for Lyme disease. Isn't that incredible?!
Here is the article if you want to read more: https://www.lymedisease.org/does-lyme-increase-covid-risk/.
Not to say that everyone has Lyme, but I think it's much more prevalent than we give it credit for. My doctor once told me that he believes there are so many people out there who have Lyme (and coinfections) and don't know it, and I believe it, too! I myself had it for at least 3 years without symptoms. With the way it can be passed from person to person, and the insurgence of ticks and other carriers, it's really no wonder this is one of the greatest epidemics of our time. I alone have had a handful of friends and acquaintances find out they or someone they love have Lyme since I've been diagnosed. If only the world would handle Lyme like they handled COVID!
One thing is for sure, I'm extremely apprehensive about the possibility of contracting COVID again. If I were healthy I wouldn't think much of it at all, but obviously that's not the case. Some may think that I just need to live my life. But the fact of the matter is, even if life were to go back to 100% normal, I'd hardly be living. I'm hardly even surviving.
Ninety percent of my days are spent on the couch (which is also where I'm currently working) and probably five percent is spent taking Epsom salt baths to help with the pain. Life is no longer enjoyable. It's tough for me to look forward to anything anymore. Even with our sisters weekend last month, I had such dread and anxiety because of the weather forecast, and the fact that heat makes me so sick. Simple things like going out to eat aren't even fun for me anymore because seating is never comfortable enough for my pain. And the last two times we have, I was experiencing such flu-like symptoms that I was miserable the whole time we were out.
Obviously my family brings me about the only joy I have, and they are the only reason that I keep going. I definitely don't think I'd be here any longer if it wasn't for them. But I just don't know how much more I can take. And I certainly don't think I could handle another round of COVID, let alone the after-effects.
The other thing is, we can't afford to keep up. Earlier this year, I had a total breakdown. Like, I can't keep up with these treatments that are either not working, or just making things worse, and eating up all of our earnings. So I stopped seeing doctors or taking anything other than my sleep and pain meds for four months. At first, I didn't notice much of a difference - positive or negative. But now, I'm doing so poorly that I have to get help, whether I can afford it or not.
Unfortunately, as everyone is experiencing, cost of living has gotten to be so ridiculous; just keeping up with gas and grocery prices has been tough. Also, our lovely landlords decided to raise our rent another $300/month this year. And oh yeah - their son is moving in at the end of our lease, so we will either have to buy a house (which we have $0 to do) or move somewhere else where rent is even higher than what we're paying now. I've nearly maxed out all of my credit cards with my doctor appointments & meds, so I'm about at the end of my rope.
We will see where things go from here, but it sure is tough to remain hopeful. At this point, I'm just praying for another miracle! And that I don't catch COVID again, of course.
Kommentarer