Okay, so nothing too profound with this post, but I want to just take this time out to be perfectly honest...."'cause there's a lot of stuff I keep bottled that hurts deep inside of my soul, and just know that I--"
Whoa. Sorry about that. Every once in a while I start a sentence and then the whole "breaking-out-into-Em-lyrics" thing happens. Back to the point of the post now.
In all seriousness, though, I wanted to write this post to shed light on one of the least glamorous (read: least socially acceptable to talk abut because it's not pretty) aspects of this illness, because while I am positive most of the time, and even though I never doubt that God knows what He's doing, there are moments when I would trade just about anything to be rid of this illness (these illnesses). I think we all would, right?
When I was first diagnosed, I became an avid consumer of all information I could find about this journey--and while articles written by medical professionals were wonderfully educational, the personal testimonies I found, the firsthand experiences people shared that showed me I am not alone in all of this madness, were some of the things I found solace in the most. I will admit that it's easy to get dragged down if you constantly read about the negative experiences of others on every bulletin board/forum you can find--and yes, that happened to me at first--but once you learn to sift through the massive amounts of information and testimonies out there, finding others whose stories are so similar to your own is such a great feeling. Not that you want anyone else to deal with it all, but just that you finally know you're not crazy, not a hypochondriac, and not alone.
And there are some instances where the most effective thing to read is someone sharing his/her experience with a particular symptom (usually a strange one, and usually one that you have experienced but thought no one else understood), as well as what helps him/her get through those moments. So without further ado, and in the interest of full disclosure with the hope that this may help one of you reading this, here's what's currently happening in my house (as I write this sentence, it's 3:34am).
We went to bed around 10:30 tonight. I probably got to sleep around midnight, which is quicker than my usual go to bed/go to sleep transition happens. At 2:15 I was jolted awake by a combination of symptoms: overheating, air hunger, severe unrelenting nausea, my right hand continually shaking/spasming (similar to the motion you'd see in someone who had Parkinson's/ALS), and every ten seconds or so my entire body was doing this tensing/jerking/convulsing motion that lasts a few seconds at a time. I lied there for ten minutes with this happening, stubbornly willing it to go away, but knowing exactly what was happening--a herx was starting--and knowing it wasn't going to ease until I took action in the form of detox to get rid of all these toxins that were having the equivalent of a rave inside my body.
Now, I hate hate hate hate waking up Rog in the middle of the night for anything, because he already does so much for me day in and day out, but I knew I couldn't take care of this one on my own, so I woke him (probably in the middle of his REM cycle), and explained to him how I was feeling and that I needed him to do three specific things for me:
1.) Get my burbur detox drops and a cup of water to put them in to drink.
2.) Get my Atarax (a prescription antihistamine my doctor gave me to have on hand to take when herxing strikes, because herxing releases histamine--note: if you don't have a prescription antihistamine, I recommend keeping Benadryl on hand and popping one or two) so I could take one.
3.) Fix a pot of my coffee (organic, caffeinated) to fill my enema bag so I could do a coffee enema to get rid of a lot of these little buggers/toxins.
And, because he is the most wonderful husband known to man, he immediately got up (it was then 2:45am) and did all three for me without one word of complaint, because he knows how unpredictable and insufferable this whole process can be.
So I immediately took the Atarax and one dose of burbur, and then had him pour the coffee into the enema bag for me (I usually do this myself, but with my right hand moving uncontrollably, it wasn't exactly something I wanted to try). Thankfully the rest of the coffee enema process doesn't involve as much control/balance/precision as pouring coffee without spilling does, so I told him to go back to bed and try to sleep while I handled the rest of it. For those of you who are reading this thinking, "She did WHAT with WHAT and WHERE?!" allow me to share my firsthand experience with (and non-professional opinion about) coffee enemas.
I'll admit, the first time I heard of coffee enemas, roughly a year ago, I thought it sounded like a crazy remedy people latched into when they were desperate, but that couldn't possible help as much as people say they do. And I'm aware there are some people out there ("normal" people and medical professionals) who think they're not helpful, but I'm telling you right now those people are wrong. When I saw my wonderful doctor for the first time last December, I had read a lot about coffee enemas but hadn't yet tried one myself. Thankfully, he brought it up during my appointment, which was when I decided 100% that I was going to try it.
A one-sentence description of how coffee enemas that is nowhere near comprehensive but should sill provide you with basic information is this, taken from a one-page overview written by the Gerson Institute (where coffee enemas originated):
The purpose of the enemas is to remove toxins accumulated in the liver and to remove free radicals from the bloodstream."
Pretty neat, right? Especially when so many of us have issues with not being able to detox enough. But the benefits are numerous, ranging from relieving headaches, nausea, fatigue, bloating, indigestion, to removing toxins, yeast, parasites, and more in your intestinal tract, making your body more alkaline, activating your lymphatic system,improving your skin, and the list continues. For a super in-depth description on every aspect of coffee enemas (including instructions for how to do them), I'd recommend clicking here.
My experience with coffee enemas over the past 6 months has made me a believer, big-time. Coffee enemas regularly save me from otherwise-unrelieved nausea, fatigue, "heavy" toxic-overload feelings, headaches, multiple digestive issues, and more. Yes, it can be a little awkward at first because it seems counterintuitive (isn't coffee supposed to go into the other end?), but once you've done the process a few times it becomes second nature, I promise! Even if I'm not having a flare up or herx, I do maintenance coffee enemas at least once (usually twice) a week to give my body that extra push it needs to get rid of toxins.
So, back to my story of how my night is going, when I started writing this post I was lying on my bathroom floor at 3:30am getting ready to do some major detoxification. No, it's not a pretty subject to talk about, but Lyme & Co isn't exactly a "pretty" thing to fight, and I'm willing to share anything at all that may help someone else along the way.
At this point, I've taken one Atarax, had two doses of burbur, and finished an ultra-detoxifying coffee enena, and I'm glad to report that even though I'm exhausted, my convulsing, shaking, overheating, and nausea have stopped. Also, the exhaustion I feel right now is most definitely the Atarax kicking in (it makes me tired--similar to Benadryl except more effective), so I'm gonna try this sleep thing again.
One last thought before I close:
This entire journey isn't something anyone can be prepared for or anticipate as a possibility when embarking on the journey that is marriage--and with our 3-year anniversary coming up on Wednesday, I've been thinking a lot lately about how much we've been through together in just these first three years and how absolutely blessed I am to have someone who truly embodies the spirit behind the "in sickness and in health" section of our vows. If it were up to us, we obviously wouldn't have chosen to endure these trials, but through all of this mess God has proven over and over (and over and over...) again that He's in control, that He takes care of His children, and that He will always make a way where there seems to be no way in sight. So really, throughout these first few years, we've been able to develop a level of trust in Him, and a level of devotion to each other, I'd venture to say takes many couples quite a bit longer to develop. And as always, I want to give all the glory to God for that.
If I offered you the chance to travel backwards in time to a time in your life of your choosing, would you take me up on that offer? I don't get into the practice of assuming all that often, but I'm willing to bet most, if not all, of you who are reading this said (or thought) the word, "yes."
Why is that? Why do we, as humans, have the inherent desire to travel back in time and re-live moments in our past? The answer seems simple enough: they were good moments.
(Hint: it's a trick question. The answer is both yes and no.)
A couple different types of longing I believe are common when it comes to nostalgia (or at least are common in my nostalgic episodes)
A truly excellent past experience.
This could take on a variety of forms--your 7th birthday party at the roller rink, your high school graduation, walking around your college campus, your wedding day/honeymoon, the moment of laughter you shared with a loved one the last time you saw them before they passed--the list is endless, and these truly were wonderful moments for you. Since they were such happy times, it's perfectly natural to long to re-experience the actions, the emotions, the indescribable happiness you felt in your heart, the sense of accomplishment you had. And years down the road from any such moment, presumably at a time in life where your life is good but may not feel exciting or great, or a time when you feel like you're stuck in a place you don't want to be, whether it's due to a job, an illness, a relationship, it's far too easy to let yourself dwell on "the good old days" and live life with your body in the present, going through the motions, but your mind stuck in the past, waiting till Doc Brown gets that plutonium and makes sure his flux capacitor is in working order to take you back to those happy moments in your past. It's worth noting that everyone goes through this at some point in their lives, and most people probably experience this more times than they want to admit. But I'll admit it--I have this experience a lot.
A past experience that you've convinced yourself was excellent.
How many times have you experienced an intense longing to go back to a certain period in time and expressed that desire to another person, usually someone who was part of your life during the aforementioned longed-for time, who was quick to remind you that the time you want to re-live wasn't actually all that good? It's very likely that many of you reading this have experienced that very thing, and even when it's pointed out to you that the time you want to experience again wasn't great for you, you proclaim that it most definitely was a good time because at this point in your life you can't think of anything but good things surrounding [time period X]. Then you get stuck in the same trap of going through the motions you must do in the present in order to pay your bills, put food on the table, keep a job, but your mind are more often dwelling on the past than not. And while this formula is very similar to what I outlined in scenario 1 above, it's also more dangerous because in this scenario you're not only longing for something that's already happened, but you're romanticizing the past. You're not only allowing yourself to dwell on actual happy memories like the ones in the previous example, but you're letting yourself dwell on an experience that wasn't actually a good experience--but by golley at this point in time you can come up with a list of reasons (from your imagination and your tendency to push out anything negative in favor of the smallest thing you can latch onto and exaggerate its level of greatness) it was perfect. But this is also the type of nostalgia that, in the future, can give us hope when combined with the type of nostalgia in scenario 1. Read on to discover why I'm not just losing my mind in the form of contradicting myself within one paragraph.
Throughout my life, I have been someone who allows myself to be overcome with nostalgia of all kinds. There was actually a time in my life where I had been out of eating disorder treatment facilities for 6 or 7 years (this was before I entered a third facility in 2011, but that's a completely different story), and I would find myself (fairly frequently!) longing to go back to the center, because in my mind it was the best place in the world--I had so many good friends there, the staff members were great, it was a supportive community, I had not a care in the world--or so said my mind, which had romanticized the experience to such an extent that I didn't remember the really difficult challenges I had there, which were abundant!
Nostalgia like that was not my friend. And it's still not my friend, even though the particular circumstances I long to re-live have changed over time. But it taught me one thing--when you're far removed from a less than ideal situation, when you've been out of that situation or circumstance for a decent amount of time, you won't always be haunted by the bad times you had while living through it. I frequently mention that I look for the good in every single thing I experience, and that's because there is always SOMETHING good, even if surrounded by things that are less-good. But with the number of times I've felt this type of nostalgia for a past experience no one would logically desire to live through again, I've learned the lesson that bad experiences frequently loosen their grip on your memories over time, which is a very nice attribute because it means you don't have to be haunted by thoughts of that bad time forever. (I realize there are some things people can go through that may never become romanticizable or become easier to forget, and I'm not minimizing those situations at all. I simply believe this applies to a great number of life experiences.)
(If you've read this far, kudos to you, and please bear with me. This analytical look at nostalgia will end shortly.)
I also experience the nostalgia referenced in scenario 1 on a daily basis. This is partially due to the fact that I spend basically all day, every day within the four walls of our house (but then there are the interior walls, so really there are a lot more than four, but if I keep this digression going this post will never get finished), and throughout my days I see countless pictures of Roger and me on our wedding day and in
Disney World on our honeymoon in frames around our house. I also have unlimited access to all the pictures I've ever uploaded to my social network accounts, so I frequently torture myself and look through album after album of pictures from college and try to remember exactly how wonderful I felt each time I walked around the Centre College campus (the prettiest campus in the history of ever, IMO, but I may be a little biased)--those are my second-most-oft longed for pasttimes. But the pictures of us on our wedding day take the cake. I don't think there's a single day that passes during which I haven't had at least one thought along the lines of, "Man, that was such a great night! And we danced for hours at the reception! My arthritis was completely under control despite rain and I didn't stop smiling the entire day! What a perfect day that was--the happiest day of my life!"
The downside to that particular form of nostalgia, especially when you're dealing with a chronic, debilitating illness, is that you eventually have to bring your mind back to the present time and acknowledge that you simply can't have times like that right now. That's when the negative emotions start to kick in--not that they're negative emotions about the past experience, but they're negative emotions about your present circumstance, which can make you oh so bitter if you don't actively combat them. Because it is 100% true that I can't dance for hours right now, I can't stand in heels for hours and have hundreds of pictures taken, heck, I can't even stand on my own for a few seconds without requiring an assistive device. And if I'm not careful, my mind can easily slip into "focus on the bad things" mode. But I am careful, and I don't let my mind even go there (for more than a minute or two).
That's because the type of nostalgia from scenario 2 has taught me that once I'm through this battle with Lyme & Co, I won't constantly be thinking about the bad times. I won't reminisce about how I couldn't move/stand/walk/eat "regular" food/drive/work/read/any other normal activity. I won't constantly be thinking about the pain I experienced daily, the multiple nights a week I got zero minutes of sleep, the sudden-onset violent herxes I experienced frequently, always without warning.
Does that mean that when the time comes I will have forgotten all these things? I seriously doubt it. The amount of time I've dealt with this illness (as well as the amount of time I still have left of treatment) is a solid chunk of time. We're looking at a year and a half straight so far of debilitating illness (not counting the 20+ years of misdiagnoses), and it's possible I could have another 2 years or more until I'm completely healed. But notice I say "until I'm completely healed" instead of something like, "to see if I'm completely healed." I say that with confidence because I know God has already started healing me, and will continue to heal and restore me in His time.
But the main thing I'm trying to say with this post (which I believe has gotten off-topic), is that I've learned to combine the two types of nostalgia listed above and use them to help me along instead of letting them keep me stuck in the past. Once I've beaten these illnesses, I fully expect scenario 2-type nostalgia to work to my advantage (once a bit of time has passed) and help my mind block out the worst days and focus on the good times I still have amidst the trials (like being able to write, watching the Olympics, discovering the magic of essential oils, learning to appreciate my body for what it does). And once scenario 2-type nostalgia has done its job, I expect scenario 1-type nostalgia will serve the following new purpose in my life: sticking around so I'm able to remember how great things were in the past, while at the same time knowing that with my newfound appreciation for every aspect of life, things aren't going to be that good again--they're going to be better.