The universe is definitely screwing with me lately.
Seriously… some CRAZY strange stuff has been happening in my life in the past few days, so I feel compelled to document the weirdness.
I’m still trying to make sense of it all, so I’m not sure if there will be a point to this post or not, but I’ll definitely try to make it worth your while.
If any of you read my most recent blog post, you know that earlier this week I was feeling super whiny and miserable due to:
- Having a set back and realizing I still have a long way to go before I get fully healthy
- Feeling betrayed by a very important person in my life
So naturally, I threw myself a giant pity party and pathetically cried… quite a few times. Like straight up ugly cried. It was the only logical thing to do.
Was I overreacting? I don’t know. It’s possible. But there is a lot more history that happened before that incident that influenced my feelings about the whole thing. And honestly, when we’re chronically sick, sometimes you just need to let yourself be sad.
Most days are a mixture of trying to find a way to manage various pain, grief, loss, disappointment, sadness, feelings of missing out, and fear of the future. So sometimes… little or medium incidences seem like HUGE FREAKING DEALS because when you’re constantly trying to keep your shit together, it’s not difficult to be pushed over the edge.
“WHAT?! I just put my chapstick here! Who stole my chapstick ohmigod I can’t handle this! I hate my LIFE.”
[Just kidding, I’m not that dramatic……….. all the time.]
In my occupational therapy schooling, we learned to document this as “Patient demonstrates decreased frustration tolerance, poor self-regulation and limited coping skills.”
LOL… That’s me nowadays. I have the frustration tolerance of a small toddler.
My new functional medicine doctor I saw last month said it best: “A lot of people who’ve been chronically sick for a long time tend to be traumatized, or develop some form of PTSD from the whole process. And because they’ve been dealing with so much for so long, they’re constantly like a simmering pot, ready to boil over at any moment.”
Touché, new doctor lady, touché.
Post-Traumatic-Lyme-Disease-Disorder. Sounds about right. Add it to the diagnoses list.
BUT… If this chronic illness journey has taught me anything about emotions, (and yes, I know there’s still a lot I can learn), it’s that I now know it’s best to allow yourself the chance to fully feel emotions when they come, and then do your best to try to move forward from them soon after.
This concept was foreign to me, because by the time I entered kindergarten to the time I turned 18, I only cried a handful of times. No really, I literally never allowed myself to cry; I saw it as a sign of weakness.
[I thought I was super tough, but cold-hearted bitch might be more accurate. When I moved from New York to Maryland, mid high school, I didn’t even cry saying goodbye to my childhood friends. My friends cried, and I knew I should cry too, so I tried to think of horrible things like puppies dying and kids starving to make myself shed a tear. It didn’t work. Yeah… I’m aware, something was/is wrong with me.]
But after dealing with the emotional roller coaster that accompanies multiple misdiagnosis and finally chronic Lyme disease, I’ve softened up a bit. I’ve slowly learned to allow myself to be vulnerable and to let myself feel uncomfortable emotions. And, interestingly enough, this has allowed me to experience joy, happiness, gratitude and other positive emotions more fully.
So, in short – I allowed myself to feel sad on Monday. But when I woke up on Tuesday, I was determined to not dwell on the previous days events. Whenever I’m struggling or stuck in negative emotions, I now actively try to do my best to be open to new things. New possibilities, opportunities, or perspectives. To be open to things going differently. I silently ask myself and the universe, “How can it get any better than this?” and “How can things go better than expected today?”
This little trick allows me to have a different perspective, and to be more willing and open to experiencing joy and gratitude for things I may not have paid much attention to.
Here’s what I noticed:
Just when I was feeling sad about an important person not showing up for me, other unexpected people started to show up in my life.
Nothing big or extravagant happened. No one swooped in and promised to make everything alright. But these small gestures and unexpected moments were exactly what I needed, and were so profound, that they impacted me in huge ways.
THIS IS WHAT HAPPENED
[And for reference – Monday was my Big Horrible Miserable Pity Party Day]
Tuesday, I received a text message from someone in my past who I used to be close with, asking how I was doing. We chatted and caught up with each other. The conversation evolved and eventually he told me that he hopes my treatments work, and he really wants me to be happy and healthy, and that I deserve it the most out of anyone he knows. He then told me that he reads my blog. (Months ago, I only briefly mentioned that I started a blog, but he went out of his way to search for and read it.) And he proceeded to apologize for not being as supportive as he could have been throughout my health struggle.
Wednesday I also received quite a few supportive and thoughtful comments on my most recent post, which meant the world to me. And I got a text from a relative a few states away that I haven’t seen in a while, checking in to see how I was doing. All of these things helped me realize that I wasn’t alone in this.
I woke up on Wednesday feeling relatively decent and hopeful that it would be the day I would finally feel well enough to get back in the gym. Although recently, I had been slowly starting to go for walks and was able to do one hike since my surgery, it had been almost 6 weeks since I was able to lift weights. And I was itching to pick up some dumbbells. On my good days, when I feel like my central nervous system is strong enough to handle it, weightlifting provides a certain type of pain relief I can’t get anywhere else.
Unfortunately, about 10 minutes into my morning physical therapy appointment, debilitating fatigue washed over me. (Just to clarify, I wasn’t exercising at PT.)
The PT I receive is called strain-counterstrain and all it requires is laying on a table while a therapist does manual work on my body. It can actually help you clear out Lyme bugs and other bacteria, so exhaustion happens sometimes. And I didn’t mind because I was receiving therapy from the almighty strain-counterstrain guru that day… No seriously – he’s the one who’s pioneering the latest discoveries in this technique and he’s INTERNATIONALLY recognized for his work and his teachings. I happen to be one of about 6 of his “chronic” guinea pigs that he uses to discover new tender points and develop new releases. So sometimes when he finds brand new points on me, he hasn’t figured out the best way to treat them yet. But by the time I have my next appointment, he has it figured out.
So after PT I needed a nap, but I made myself drive to the organic grocery store before heading home. I was so tired, I literally sat in my parked car for about 20 minutes, trying to convince myself to get out of the car and go in the store.
So all of my grand plans for the day were shot. When I got home, I laid in bed and spent some quality time with my best friend, the Biomat for the remainder of the afternoon, making medical phone calls, emails and researching new treatment options.
By dinner time, I was in a lot of pain. So I decided that even though I did not have the energy, I was going to attempt going to the gym. I got dressed and drove myself there, only to want to turn right back around. But I told myself, that I needed to go inside, and do ONE exercise. And after I completed that, if I wanted to leave, I could.
So after struggling through some bicep curls, bench press and squats, using about half the weight I normally can lift, I was contemplating going home. But just when I was about to give up and leave, a guy came up to me and complimented me on being the only girl in the weight lifting area. I normally HATE when people try to talk to me while working out because it makes me lose my focus and motivation… and you will never see me strike up a conversation with a stranger at the gym. (I would totally wear that tank top.^) But after chatting for a bit, it actually lifted my mood and motivated me to keep going. And I could tell he was being genuine and not creepy or douchey like meathead gym guys typically are. (Sorry, not sorry, you guys suck sometimes.)
After returning to our respective workouts, we later found ourselves in the same area again and this time, his friend introduced himself and all three of us chatted about weightlifting versus cardio and other random fitness things. It was nice. Unexpected engagement with strangers is often uplifting, and by the time they left, I realized I had worked out way more than I thought I was capable of.
After they left, I noticed the other person in the free weight area was a familiar face. Someone I like to call “Jesus Chris.”
Now… I’ve seen Jesus Chris at the gym two other times. Both times were instances were I felt like my life was so messed up and so hopeless, the only thing I could think to do was to go to the gym to clear my head. My boyfriend and I gave Chris this playful nickname because he’s literally like a savior that comes out of NOWHERE at the times I’m struggling the most.
I technically don’t know much about Jesus Chris, but it’s so weird, I feel like I knew him instantly when he first introduced himself.
I first met him back in June, when I was struggling with having feelings of wanting to end my life because after 5 years of misdiagnoses, and almost one year of Lyme treatment, I was not finding any relief. And I was getting worse.
I was just starting to accept the fact that maybe I would have to give up on my dream of being healthy. It was dawning on me that maybe Lyme really isn’t curable. I kept hearing that Lyme is something you will have forever, but I naively thought I would be different. I was too smart and determined; I would overcome Lyme.
But Lyme was beating me down… I was running out of treatment options and going through my parents money rapidly, so I began to think I would just have to buck up, and learn to move forward with my life despite being chronically exhausted and in excruciating pain all the time.
That new mentality was hard to swallow, and I was having a horrible day, and I was in so much pain. So I made the decision to go beat up my muscles at the gym because I couldn’t stand the thought of lying in bed anymore and I didn’t know what else to do.
Enter: Jesus Chris (JC).
JC: “Hey, sorry to disturb you, I just noticed you doing squats over there. I don’t mean to be weird but you have really good form, is there something that you concentrate on or think about while doing them?”
Me: [super confused and caught off guard, awkwardly trying to turn down the angry rap music blasting in my ears] “Oh really? That’s surprising, I feel like I don’t know what I’m doing half the time.”
JC: “Well you’ve got good form. I was just wondering, some people look up, or lengthen their spine. The reason I said something is because I injured my back from squatting incorrectly and it’s been a long process, and I had to start with just the bar and re-teach myself how to do it properly.”
Me: “Oh gosh, that’s tough, what kind of back injury did you have?
[Yada yada yada…more small talk]
Me: “Well it’s funny you say that, because I’ve always had back issues too and I feel like that’s why I’m not able to squat that much.”
JC: “You had a back injury too?”
Me: [Shit, now I backed myself in a corner..] “Well…uh… No. No injury, just a lot of back pain and nerve issues… because I actually have Lyme Disease.”
JC: “Noooo…. I’m so sorry to hear that. Forgive me, I don’t know much about Lyme Disease, is there good treatment for it? How are you doing now?”
Me: [Funny you should ask… a month ago I would’ve said “Yeah! I’m doing herbal antibiotics and __ and ___”] “Well…..not really. If you catch it early, antibiotics might be effective at treating it. But a lot of people have it for years without knowing it. I was undiagnosed for 5 years so its much harder to treat, and antibiotics don’t work.”
[More small talk about Lyme, and lifting weights.]
We eventually exchanged names and nice-to-meet-yous and continued on with our own work out routines.
But about 20 minutes later, Jesus Chris came up to me again, and said:
“I know this might weird you out, and I didn’t want to bother you again, but something is compelling me to say this to you… Lindsey, I don’t think your going to have Lyme Disease for forever.”
Ohmigod… stop it.
My head fell off.
I could’ve cried, died, and fainted all at once. (Yes, I know that doesn’t make any sense.) Luckily, even though I felt like bursting into tears, I was too shocked to do so, so I stood there with a huge beaming smile on my face and told him that it meant the world to hear that.
To date, this is one of the most profound experiences I’ve had where I felt hopeful and at the same time spiritually connected to the world around me. I couldn’t wait to tell my parents and boyfriend about the crazy encounter I had. From then on, it was slightly easier to stay hopeful about my treatment plan.
Fast forward two months, and I am at the gym again on another crisis night. This was sometime after my second cavitation surgery, but before the third one. I was upset and trying to deal with the frustration of being confined to my house in recovery for weeks and the disappointment of not feeling any different or any better.
I run into Jesus Chris for the second time and we chat. I reiterate how meaningful it was that he said what he said on the first night he met me. We get to talking, and he tells me how religion is a big part of his life and how that wasn’t the first time he’s felt a strong urge to say things to people.
I’m so glad he acted on it.
He gave me his number and told me to text him if I wanted to, and said he’d be praying for me. Now, this would normally turn me off immediately, but for some reason, I left feeling really open-minded and grateful for the interaction.
For any of you who know me in real life, like REALLY know me…. you know I freaking hate religion. In my opinion, you can be spiritual and have good morals without blindly following a contradictory set of rules because they’re written in a book somewhere. (But I’m by no means “religious person” hater – ya’ll are totally okay in my book, and I’ll love you just the same, as long as you don’t expect me to have the same beliefs.)
I was raised in a go-to-Catholic-church-every-Sunday family and it absolutely RUINED religion for me. I mean seriously, confession as a first-grader is truly a traumatic experience. You learn to think you’re a bad person. And as a teenager, I had too many questions that no one could answer. My parents tried to answer them, and failed miserably, which only made me more skeptical. I’m a very analytic/rational person in the way I learn and approach information, and the whole God thing had wayyy too many logical fallacies.
“You’re telling me, this invisible man in the sky, who is supposed to be the epitome of love and acceptance, doesn’t agree with homosexuality? That’s dumb. I’m going to make up my own God… seeing as how I’m pretty sure that’s how Christianity came about anyway.”
So anyway – when I saw Jesus Chris this week, I weirdly felt the need to express to him how intuitive I thought he was, and he said he felt like he could tell I was struggling but was trying my hardest to put on a smile. (What stranger can sense that when some of the people closest to me can’t? Crazy.) Eventually, we inevitably had a random conversation about religion in the middle of the gym. What I didn’t realize is that he is very similar to me in my path of being raised Catholic, rebelling, and journeying into atheism, then agnosticism, and eventually toying with Buddhism.
He asked if I drank coffee and I awkwardly had to say “No, not anymore” (because as a Lymie with recovering adrenal glands and susceptibility to mycotoxins, coffee is a no-no.) So he asked if I drank tea, and after saying yes, I agreed to meet up with him sometime.
Crazy how the world works, but I just got a feeling that there is a reason I was supposed to be talking to him. Six months ago, I never would have even entertained the idea of meeting up with an (almost) stranger who is passionate about God, to talk about religion. No way!
I don’t know exactly what this all means, but what I do know is, the universe works in mysterious ways. And I certainly don’t hate it. I left the gym that night feeling a little bit more alive, like my soul was recharged from these unexpected encounters. I sang and danced while driving home from the gym, to songs I didn’t even particularly like.
Maybe its a sign that God’s telling me I need to become a body builder to heal from Lyme?
Just kidding. I think I pulled a muscle just looking at her.
MORAL OF THE STORY
I’m still figuring out what I do and don’t believe about this whole God thing, but what I do know is… I believe things happen for a reason, and that things or people can appear when we need them most.
The blog post was supposed to end there ^, but since I wasn’t able to write it all in one day… I can now tell you guys about another thing that happened, that’s right in line with this post’s theme.
One more person randomly appeared in my life today.
(Let me tell you, things really are getting really weird around here. And I’m enjoying every minute of it.)
Although I left the gym last night feeling on top of the world, I paid for it today. I woke up feeling stiff and sore and completely wiped out. I tried to make myself go for a walk but I couldn’t muster up the energy, and I was feeling dizzy and nauseas on and off. Today was a rare day that I didn’t have any medical appointments, so I decided to continue my research into further treatment options. (I’m currently looking into doing ozone, ultraviolet blood irradiation or hyperbaric oxygen treatments. If any of you have any insights on those leave a comment!)
Although I was having a bad day physically, I was still in an optimistic mood. But about three hours into researching, and watching youtube videos of Lyme patients discussing their treatments, I noticed myself slipping into hopelessness.
It’s really hard not to notice or focus on the fact that Lyme patients everywhere are spending tens of thousands – or sometimes hundreds of thousands – of dollars desperately trying to get well. And most aren’t getting well. Sometimes you come across Lyme patients who have found treatments that provide them improvements – which is great! – until you realize that they spend 5-6 hours doing these treatments, every single day, for months or YEARS, which prevents them from having a normal life. And that if they stop the therapy, they relapse.
It’s also simply overwhelming to try to figure out which treatments are going to be the keys to getting you healthy and where to spend your money.
Eventually, I shut my laptop in frustration, and was just staring at my wall, when my phone rang.
The name on my screen shocked me at first, and then gave me butterflies in my stomach; I picked up. The person on the other end of the phone asked if it was Lindsey, and then introduced herself and asked if I remembered her.
Of course I did! I had not seen or talked to her in over FIVE years but she was one of the sweetest people I ever met.
When I was first (mis)diagnosed with Fibromyalgia during my freshman year of college, my doctor suggested massage therapy for pain relief. I started going to John’s Hopkins Integrative Medicine center for massage therapy since it was only about 10 minutes from my college, Towson.
There I met… “Miss K” we’ll call her… A sweet little angel who was passionate about massage therapy, reflexology, natural healing, her husband and children, and helping the world. She was always experimenting with essential oils and giving me tea and suggestions to help heal my thyroid and fibromyalgia, or whatever cold I had at the time.
During my massages, we would talk about anything and everything, and we often had deep conversations about life, the state of our medical care, society and the world as a whole. She was one of the first people that influenced my paradigm shift on my health. Because of her, I starting getting serious about finding the root cause of my problems and started looking outside of western medicine to give me answers.
But every summer break I would stop seeing her, as I returned to my parent’s house. And when I returned in the fall of my junior year, the occupational therapy program was so physically demanding, that there was no way I could afford the time to go get a massage once a month. Soon after that, I had my internships, and by the time I returned from New Mexico, and tried to schedule an appointment with her, the office said she was no longer at Johns Hopkins.
I was sad, and tried to search for her on the internet, but with grad school on my brain, I figured it was a dead end and made no other attempts to track her down. A year later, when I moved back in with my parents after I somehow finished school, I found a card she gave me and suddenly had an urge to email her and let her know that she was somewhat of a mentor for me. I tried to call John’s Hopkins to see if they would give me an email address and they wouldn’t. (After today, I now know that if I had just looked in my phone contacts, I had her cell number. I guess I figured it was a Johns Hopkins number. Whoops.)
So imagine my surprise, when a year after that, she calls me, and says that while packing up her house to move, she came across my contact information and wanted to know how I was doing, and that she thinks of me often. I was smiling from ear to ear as we briefly caught each other up.
She was sorry to hear I was struggling still with my health and to learn about the Lyme Disease. She told me she has her own practice now, and that if I’m willing to drive an hour to Baltimore, she would love to give me a free massage and “spiritual healing” session.
Ummm… Done and done!
She texted me this after I hung up.
And now I have to wonder, would all of these things happened if I hadn’t forced myself to change my perspective and ask, “How can it get any better than this?”
Who knows :)