Ten Tips to Understanding the Struggles of a “Lymie”, Part One

I want to start this by talking about my most recent post (see "The Flaw In The Plan"). I've been having some legitimate episodes of fear lately, thanks to my scarier cycle of symptoms (say that 5 times fast). And I needed to vocalize those fears, as opposed to having them stay bottled up and eat me from the inside. (after all - CLD is doing that already HAHAHA groan...)

All of which led me to doing some "tall thinking", as Elaine Stritch would say, during this 48 hour panic attack, and this morning, after it had subsided. And I came to this conclusion: Purging, for all the stigma that surrounds that word due to eating disorders and that awful film franchise, is a good thing. When we go to the bathroom, we purge. When we go to the gym and sweat like mad on the treadmill, we purge. Or even when we break a fever in the middle of the night by sweating like crazy through our sheets, we purge. When we let out our feelings and have a monumental crying session that doesn't seem to end, we purge.

One of my absolute favorite quotes is from Elizabeth Gilbert, author of BIG MAGIC and the wildly successful EAT PRAY LOVE. "Ruin is the road to transformation". Our existence, our culture, our society, our bodies - all of it depends upon the establishment of existence, and then the erosion of that existence. Life is flux, not permanence. We have to let things BE, and once they ARE, then they can "HAVE BEEN". Speaking my truth (I hate that phrase, but there you have it) and talking to you all about the legitimate, real fear I have of dying from CLD allows me to purge it from my mind. Not that that dispels it completely, unfortunately, but all the same: it's HEALTHY. And if this blog is dedicated to me exploring the winding yellow brick road back to my 100% AOK health, then that means this blog is going to be on the receiving end of a few anger based and fear based tirades. And I'm all the better for it.

Now then: a fair few of you reached out after I published The Flaw in The Plan and reassured me of your support, your love, and your belief in me. I could not have asked for better friends or family, and from the bottom of my heart I want to thank you all for those words of encouragement. They absolutely helped get me out of my fearful-funk. Many of you reached out with questions and concerns about CLD; how you can help, the intricacies of how the disease works, etc. But above all I'd say more than half of you asked what it's like to have it - the actual day to day experience.

It's never easy to understand what another person is going through, no matter the cause. The saying holds true that you'll never truly know unless you walk a mile in their shoes. In the case of Chronic Lyme Disease, there is much to be understood by not only those who know someone with it, but the person battling it as well. Let it be known that this is by no means a sympathetic appeal, but to give an honest voice of reason to those of us battling Chronic Lyme Disease who can't always find the words to explain the complexities of our circumstances. But, being the verbose guy I am and the mass state of confusion surrounding the disease, I'm gonna give it my best shot.

SO!:

10 TIPS TO UNDERSTANDING THE STRUGGLES OF A LYMIE

1.  THEY'RE NOT CRAZY, THEY'RE NOT LAZY, AND IT'S NOT ALL IN THEIR HEAD

Personal story time: when I was diagnosed last June I was doing branding and social media work for a pediatrics group in Chicago. I was sure to inform my boss, the head MD, of my newfound situation (as my personal doctor who had diagnosed me suggested I do), and I forwarded to him the email my doctor had sent to me, which spelled out my situation to my boss and superiors. Weeeellllllll that didn't go so great, because more than half the doctors that worked at the pediatrics group - including my boss, when they/he heard the news, told me flat out: that's not a real thing.

I know right? Makes for a great workplace atmosphere. And it's not limited to the doctor's office - I've had this sort of experience in and out of the workplace. The gravy train needs to stop. There has to come a point where reality takes hold, and the idea that someone infected with Lyme bacteria can have delayed response be accepted. It's WILD to me that the CDC does not formally recognize Chronic Lyme Disease, and therefore the majority of MD's out there either don't believe in it (cause it wasn't taught in school), or want to help... but don't know how to treat it, so they dismiss it. This isn't helped by the disease's 'invisibility cloak' nature, masking itself as a wide variety of other diseases and conditions.

Lyme borreliosis spirochetes (aka, Lyme bacteria) course through the blood of a person with CLD and literally, because they've been given the time to do it, dismantle the human body in a malicious manner over an extended period of time. That's reality. All other claims are a true reflection of a person's inability to reason effectively, or at the very least sympathize/empathize.

2.  THEY'RE NOT STUPID : THEY'RE UNDER THE INFLUENCE

Ever been drunk? (side note: that's my opening question whenever I meet someone new.)

To all my Clefto peeps who happen upon this post don't you dare shake your head 'no'. One word: "Sloptart". And for the rest of you who are of age (or not), of course you have! Remember how, if you were particularly sloshed, you may not have been able to be as smart or possess the ability to articulate words much like they used to when you were sober a few hours earlier? Then you can relate, somewhat, to a Lymie. If you're ever having a conversation with someone who has CLD, you might notice that they're not able to recall an obvious time or memory that you both shared. Or perhaps they came to a complete stop in the middle of conveying a thought. Don't worry, it's not them, and it's not you either. Within their brain, there exists bacteria releasing toxins that are directly interfering with the nerve relapses of their central nervous system.

I know for me that this was getting progressively worse from my sophomore year in college and onward, especially in the time leading up to my diagnosis. Not only was CLD robbing me of memories and zapping me of my social skills, but I found myself feeling 'stupider'. I couldn't remember things I'd learned in class, or even be able to learn NEW things in class. It was like my logic and common sense was being robbed from me. At it's worst, I couldn't remember left from right. No joke, folks. LEFT... from RIGHT. I had to do that L and R thing with my thumbs and pointer fingers every time someone said one or the other to remind myself of which is which. Luckily this side of things is going better for me lately thanks to treatment (if you see me in person you may however catch me doing the finger thing - I'm still recovering, folks). But for so many others, this still plagues them. 

3.  THEY'RE ON A SPECIAL DIET

You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal. How kind! Pat yourself on the back - you have common courtesy (a trait quickly disappearing from our society). Maybe this meal is one that you yourself cooked! But, of course, not without your love, passion, and hard work!

Ready for the kicker? Here's the deal. If your meal, or a place you intend to visit for food, contains either gluten, dairy, or sugar, Lymies can't eat it. The vast majority of us are on a diet designed to deprive our bodies of the fuel that directly feeds the bacteria within their blood, whilst providing the essential nutrients our bodies need to allow our immune systems to take hold and whoop some ass. In a nut shell, we're trying to avoid adding more fuel to the fire. Yes, this includes alcohol (fml). But no one is denying the food you prepared or wanted to partake in is delicious. The bacteria is just that sinister.

4.  THEY'RE NOT IGNORING YOU. THEY'RE REELING.

So. It's been a while since your friend or relative with CLD (or any other chronic illness/disease, to be honest) reached out to you. Living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms - with a life that was very unexpectedly hijacked due to said symptoms - isn't really something to show for; especially when these truths are in their face at all times and can't be ignored (if we ignore it, it only gets worse). I'm sure a number of you can testify that, if questioned about it, I can talk up a storm about my CLD. And that's because, for worse (not 'better or worse'. there's no real 'better' with this crap, I am conscious of it all the time. It's like if an invisible, freshly caught Cornish Pixie was zooming around your head, pulling at your hair, pinching you, and kicking you up the backside any chance it got. If your friends suddenly noticed you acting strangely (but again - remember - they can't see the Cornish Pixie) and asked if you're alright or what's going on, you'd probably be hard pressed NOT to talk about the annoying little pixie (stupid pixies.)

More often than not, a person with Chronic Lyme Disease can't talk about a party they went to last night, or the degree they're majoring in at college, or the job they're working, or simply what they plan to do this weekend. So many Lymies are so utterly hijacked by this CLD their weekends are most likely spent lying in bed or on the couch, in both a physically and mentally ailing state, wondering time and time again why they happened to be the “lucky” person to contract such a life altering disease. Aspirations come to a complete stand still for so many, as their life now almost 100% of the time revolves around restoring it. It's not that they don't want to talk to you or see you, or don't have anything to talk to you about. It's that the only thing they have to talk about with regards to their life is their sudden absence OF a life.

I'm lucky. While I do suffer from CLD, I've yet to reach a point where it's completely engulfed me socially. I still reach out to friends, I still write up on this blog, I'm still mobile enough to go to work and earn a living, and I'm still able to enjoy my weekends while doing my best to shove the pain and fatigue and occasional nausea to the back of my mind. But, again, so so many aren't. Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is known as 'floating', and more than likely is exhausted in attempting to explain what they're going through when they themselves don't have all the answers. Floating is a whole new level of mental exhaustion, and as someone who deals with it daily, I can attest to it's terrible power.

5.  YES, SOME OF US HAVE HAD TO LEAVE OUR JOBS OR DROP OUT OF COLLEGE. OR BOTH.

Let's step back and think for a moment: If a person with a bad enough case of CLD can't even carry on a simple conversation (see point 4), how does one expect them to delve into the untouched matters of the universe in their college philosophy course, or endure the physical demands of a 9-5 job (whether it's hauling things all day long or sitting still for 8 hours in an already uncomfortable chair)? Most people with properly functioning bodies never seem to realize this, but society demands an incredible amount of critical thought and physical energy out of each and every one of us in order for our lives to progress. Survival of the fittest, and all that. A person with Chronic Lyme Disease lacks both of these greatly. Chronic stress is usually a constant factor in college and work, and it directly compromises the immune system. It's the last thing a person with Chronic Lyme Disease needs when they're aiming from every angle to remove a deadly bacterial infection.

The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart. Believe me, there have been some times during my recovery - month long stretches - where the joint/nerve pains and the brain fog, and the nausea, and the sensitivity to light, and the headaches, and the muscle spasms from sitting too long have all had me thinking TO HELL WITH THIS! But I can't stop working - I'm simply not at a place A) where I'm financially stable enough to stop work for a big chunk of time, and B) where my CLD is crippling enough that I can, in good conscious and without any guilt, walk away from my career. Especially when it's finally headed in the direction I want it to go in. I'm somewhat lucky in that regard - I don't have it bad enough to quit my professional life. But, as I've said with all of these points so far, I'm the anomaly. Most Lymies don't get the choice. It's their health, or a paycheck. Which do you think is the more crucial to care for.

Part Two, Coming Soon…