My Unknown Battle With Lyme disease

The size of a sesame seed. That is the approximate size of a tick; the culprit behind Lyme disease. Little did I know that said tick could change my life for almost 2 years. Imagine something so tiny can be so debilitating. Imagine!

I most certainly couldn’t imagine. In fact, I kept attributing my declining health to a variety of factors. I started to feel under the weather in October 2016 but I attributed this to the change in weather (merging from summer to fall is always a struggle for me) as well as stress. In November 2016 I was an invited speaker to an international medical conference where I presented on 7 years of clinical research that I had been involved with. Feeling tired and stressed was an understatement as I spent countless nights preparing my presentation to ensure it contained quality content and that it represented the high standards of the hospital I work at.

After the conference was over, I flew to NYC to visit a friend, but I wasn’t aware she had cats. I am allergic but usually Benadryl can help get me through the night. Unfortunately, I developed full blown asthma and was so miserable that I left NYC earlier than anticipated. I ended up developing a chest infection that carried through until the new year. Then I went off to Bali in February. I assumed that my continued struggle was due to changing temperatures, jet lag, and doing a 1-week yoga retreat can put the body into a relaxed state. I tend to always get sick when my body slows down. I was taking part in the Crossfit Opens so that meant I had to go to an affiliated Crossfit studio to perform the workout on specific days. I remember at the end of the workout getting into a cab and literally feeling like death. I drove for 2 hours from Canguu to Ubud and once I arrived at my jungle bungalow, I made a beeline for bed. The next day I had a full day planned of things I spent half a year researching. But all I wanted to do was sleep. I spent my final days in Bali in bed instead of exploring. It was like my body had enough and it was forcing me to stop, whether I liked it or not. I am an explorer and I hate sitting still or feeling like I am wasting time. I was mad at myself but I just couldn’t get out of bed. This should have been a huge red flag for myself that something was off, but I just attributed it to being in the heat and travelling for 2 weeks. I ignored that fact that I had a continued sore throat every day since NYC, that my joints always hurt, that I could sleep forever if you let me and a string of other symptoms that slowly developed.

 

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I returned from Bali in March but again attributed my declining health to change in weather (summer to winter). By May I was starting to sink into a bit of a depression. I couldn’t explain it to anyone but I just didn’t feel normal. I consider myself a healthy person and one who takes pride in being energetic and never being sick. It is why I advocate for the lifestyle I live- not for longevity but to make the most out of every day. This website http://www.scrubs2sweats.com was born in May 2017 (it was years in the making), but as I was putting it together I remember feeling like a hypocrite. Here I am sharing nutritional and fitness content on this forum as well as on Instagram (@scrubs2sweats) yet I could no longer keep up with that life. I remember forcing myself to go to a crossfit class after missing a workout for almost a month, but when I went to the class, I couldn’t even pick up a 35-pound bar! The workout entailed deadlifts, where I could easier do 10 reps of 135 pounds yet 35 seemed impossible. I had to scale the entire workout and at the end of the class, I literally left in tears. WTF was happening to me?

Eventually my norm became 1 “workout” a month, if that, no breakfast because I was always throwing up, taking a cab to and from work because I was too tired so would maximize sleeping time, putting on a front at work and using adrenalin and fear to push me through the day, then spending from Friday night to Monday morning in bed. It was also adrenalin that pushed me to visit friends/events etc but whatever I did, I would pay the price for (eg going out for dinner meant the next 2-3 weeks in bed; going to work for the week meant bedtime by 7pm and not leaving my bed all weekend). I felt like I had the flu coupled with soreness from an intense fitness competition/marathon/run over by a bus and no sleep or nutrition was making me feel any better. It was tired of being tired. One would think at this point I would have gone to check it out, especially since I work in health care. But I’ve called in sick twice in a decade of work. Surely this was just me feeling run down and not able to bounce back. Summer when the weather is better is when I will bounce back. That’s what I told myself everyday.

However, July rolled around and I became at my all-time low. On top of months of nausea and vomiting, fatigue not alleviated with sleep, painful joints, swollen limbs, sore throat every day for months, overall weakness, I started to lose sensation on the right side. Now people were starting to notice that something was wrong, but of course many just assumed it was a pulled muscle from a workout. I tried to hide that I wasn’t feeling the greatest but mentally I was starting to suffer too. I kept thinking I wanted my old life back, I want my energy levels up. And it became tough at times when I would share how I am feeling with friends/family/co-workers and they would say “oh but you look fine”. I found myself withdrawing from the physical world, as I became less and less social. I could still maintain my online presence and after posting my beautiful travel photo from months , I could hide my truth and resort to dreamland or being sick in the bathroom for several hours.

At the end of August, I was trying to walk but I couldn’t. My entire body fell to the floor. I lost full sensation. I was rushed to the ER. I could hear the emerg staff talking to me and about me for what seemed like forever, I couldn’t respond. I couldn’t move. My worse fear had come to life. I started crying. The nurse patted my shoulder and told me not to panic. Yea right! I’m an academic and an athlete and now I can’t move or talk. Don’t tell me not to panic!!!! That was the single worse moment of my life.

Hours later, some sensation came back but I had developed speech impediment/stutter and couldn’t walk without limping in the months to follow. Leaving the ER, I didn’t know who to call. Some of my loved ones were away, others I didn’t want seeing me like that (what girl wants the guy she adores seeing her life that??) while others had their own stressors without having to worry about me. And truthfully, I was fully feeling sorry for myself. I sat in the ER after being discharged and cried. I was allowing myself to sink into a depression and to alienate myself from many people. I was scared of being home alone so I would go to work. At the time I felt lack of empathy by many of my coworkers, but I mean how could I expect them to understand when I didn’t even understand?

 

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Over the next couple of weeks, my motor and cognitive skills began to decline and I ended up having a medical code called for me while at work. I had a seizure and thereafter went on short term leave for a few months. At first, I was angry at my neurologist. I actually argued with her and begged her to let me return to work while the entourage of specialists tried to figure out what was happening. I was even willing to take the epinephrine and seizure meds and antibiotics if it meant I could return to work (goodbye holistic principles). I had tunnel vision and lost sight of being positive with a clear head space. Instead I became selfish and scared and angry and depressed. I have a high work ethic so as much as I loved the idea of being in bed all day, I felt like I was failing at life. I couldn’t see that I was being unfair to my peers and the patients. The guilt of being off was over whelming. I can’t explain it- it just felt wrong. Initially I couldn’t focus on getting better because I was developing FOMO. I hated that I missed out on things. For example, I missed several months of going to crossfit and eventually I stopped getting invited to hang with the crew (even though I probably would have been too tired to go anyways). I was becoming invisible.

While all the physical symptoms were debilitating, and it was exhausting going from specialist to specialist, taking all these medications and trying to suss out the conflicting information these medical professionals were giving me, it was my mental health that was suffering the most.

I pushed away the people that were there for me because I didn’t want them to see me like that; yet I gravitated towards the wrong kind of people expecting them to want to check in on me and hang out with me when I felt my 4 walls closing in. I had expected those who worked in health care and those that were family to step up to the plate, so I place my expectations on them (very unfair, I know). After hearing a family member made comments that I was making these claims for attention, I cut everyone off and went into a depression. I was so hurt! I mean if I want attention, I enter a fitness competition or book an exotic trip. And trust me, nothing comes between me and my travelling. I had to cancel flights which alone made my heart cry. Besides, those who were around me daily could see the limping, the blood shot eyes, hear me vomiting, see the weight loss and notice the washed out appearance if I didn’t wear makeup.

 

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My family doctor had recommended a book that she thought would help me “Believe me- my Battle with the Invisible Lyme Disease” by Yolanda Hadid (from the Real Housewives of Beverly Hills). I don’t watch TV or follow celebrities so I had no idea who she was but after learning that it was Lyme disease I had, I was eager to hear what others had to say. After reading her book, it felt like she wrote about my experiences and I could totally relate to her. So, if anyone is curious, go read it!

While I was off on leave, I focused on getting my health back on track. I couldn’t lift weights or do intense workouts, but I did yoga and meditation regularly. I also tried IV drip therapy, cryotherapy, massage therapy, following a strict anti-inflammatory diet and anything else anyone recommended that could bring me back to life. I chose to discontinue the meds as it was giving me GI issues. Slowly I started to improve but I wasn’t 100%.

By December I was back at work full time, but still struggling emotionally. No amount of exercise or proper nutrition was helping me return to my old self. I was having the hardest time feeling connected to people at work. I felt they didn’t give a shit and while this shouldn’t have bothered me, it did. And it was affecting my health. I would go into work crying daily. On top of that, I had a falling out with a member of my family as I felt like they didn’t care. I was spiralling. I was being irrational. And worse, my symptoms started progressing again.

Sometime in Spring things took a turn. With the help of my life coach, and truly focusing on being a better person, being more positive, being less affected by extrinsic factors, I felt a massive shift within me. My attitude towards people changed and I also became more forgiving of myself (I was so angry I didn’t go to the doctor sooner). I learned so many things during my battle with Lyme disease. As I write this, I can say I haven’t had any symptoms in months, but I have also worked very hard at maintaining both my mental and physical health.

I believe that life gives us many lessons along the way and this journey was one I needed to go on in order to better me as a person. I am not perfect, but I do know I truly want to be a better person.

 

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A few things I learned over the course of this journey:
• Show up! Show up for your loved ones. They may not ask (and unless they explicitly tell you no), just show up. I will forever have a special place in my heart for all those who came with me to the hospital/medical appointments or came to visit or even simply texted to see how I was.
• Be understanding! I was selfish with my journey that I didn’t really grasp that other people were dealing with their own stuff too. Don’t do what I did and hold it against them. People will give you what they can of themselves.
• Go to the doctor! If you don’t feel well, then go get checked out. Don’t make excuses or tell yourself it will go away. And don’t allow others to make you feel worse. I didn’t go to the doctor because I work with cancer and felt guilty about complaining. Don’t do that!
• Take care of your mind! I didn’t truly start getting better until I learned to take care of my mental health. I am a firm believer in the mind-body-soul connection and I was definitely misaligned. I feel that in any chronic disease, taking care of your mental health is part of the treatment course.
• Stick to your tribe! In the wellness world, we are big on connections and riding the same wavelength or vibrations. But if someone isn’t of your vibration, don’t force it! Doing so will just cause issues for you and that person. I have learned that you need to gravitate towards those that vibe your energy. And especially if you are sick, trying to force that connection won’t help you at all. As with any situation in life, always go towards people who bring out the magic in you- not the madness.
• Be forgiving! Be forgiving of yourself. Sometimes when you are going through something, you tend to only have tunnel vision on and selfishly can only see your situation. You will offend others. You will upset others. And sometimes this will make you feel bad. Forgive yourself and just learn next time to be more cognisant. I missed so many weddings, events, milestone events etc. for others while I was sick, but I had tunnel vision and I felt horrible when I realized I wasn’t there for others. It’s important to forgive yourself. Life isn’t perfect. We aren’t perfect. (but we can sure as hell try).

 

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Thank you for taking the time to read my journey. It wasn’t an easy one to share, but I do hope those reading it that are battling chronic Lyme know that there is hope. And I would like to think I have given the rest of you some insight as to what goes on in the mind of someone who has Lyme disease (or any invisible disease).  We aren’t crazy, we aren’t looking for attention, and most of the time it isn’t noticeable until it is. For myself, I pride myself in being healthy and always doing something, so for me being sick was very difficult, and in some ways embarrassing. I hide it for months until I couldn’t anymore. Feeling like both my mind and body was failing me wasn’t easy but I managed to make it through this period because of so many amazing souls.

To all of you that were along for the ride, I apologize and I thank you! And special thanks to the universe for bringing some new friends into my life during this period (you know who you are!). I was but a stranger, however, your kindness will forever make you my family.

 

P.S. I chose to showcase these photos that were taken at Terre Bleu Lavender Farm in September. That day was filled with unexpected twists and turns – from my rental car breaking down, to getting lost, to learning that the sunflowers had dropped a week earlier than expected so not in full bloom, and finally, to getting caught in a massive rainstorm just minutes after arriving to the farm. We took shelter under an umbrella, but as I stood there watching the fields, I realized it would be fun to run through the rain, ruining my hair and makeup. I felt so alive and full of inner happiness! Therefore, these made for the perfect photos for this blog piece.

 

Xo,

Jessy

4 thoughts on “My Unknown Battle With Lyme disease

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