I think all of us who suffer with Lyme have probably encountered more people than we can count who, when we tell them we have been diagnosed with chronic Lyme disease (or any variation of the phrase), reply, “Oh, isn’t that that thing that ticks have?” Which is a statement with good intentions but sometimes it can get frustrating because we want to just scream “Yes, but it’s SO MUCH MORE than just a little illness ticks carry that can be easily identified and easily treated and it’s a really big deal!”
Of course we rarely, if ever, find ourselves in a situation appropriate to scream such a statement, either for fear of offending the person we’re talking to or making a scene or any other reason. Instead we, or at least I know I, often find we try to wrack our brains and come up with a detailed-yet-still-concise explanation for exactly how serious this illness is and how greatly it affects our ability to live the life we used to live and how hard simple daily tasks can be, especially when compounded with the seemingly new symptoms every day, courtesy of Lyme and Co.
But this is the hard part–we often have done enough research and reading and networking and digging into any and every resource we can that it can seem quite impossible to sum up the disease in a few sentences. Not only that, but with our often-impaired Lyme brain function, a lot of the time we find it very difficult to put a sentence together to get across our intended meaning. Anyone with me here? I know it’s very frustrating for me–one of my ALL-TIME favorite things to do is public speaking. I absolutely LOVE public speaking! So to not even be able to really string together a sentence or two when I’m talking one on one with somebody is super, super frustrating for me, and sometimes I get so irritated at my brain’s inability to form a coherent thought that I automatically revert back to one of the “saved files” in the Lyme filing cabinet in my brain and give a rehearsed answer anytime I’m asked, “Well how are you feeling?” or “What can you do about it?” or “Why did it take them so long to figure out what’s wrong with you?” Because sometimes it’s easier just to give that rehearsed answer than to attempt to explain exactly what we go through daily.
Anyone reading this who is a friend/family member/other support person for anyone suffering with Lyme and co, and particularly if you are someone who is one of the above listed support people for me, please know that if I do ever give you an answer like, “I’m fine” or any variation of that phrase, even if you know or can tell that I’m not feeling so fine or well, know that it has absolutely nothing to do with you or anything you’ve done–so please don’t take offense–it sometimes just isn’t worth the extra effort to explain in detail because surely enough, more often than not, after I try to thoroughly explain something, my entire store of brain power will be gone for the day (or 2 days, or more), and there are times when it’s not worth that loss of brain energy to try to explain something with the elaboration it deserves.
But rest assured, if I’m having a particularly good day, I might just talk your ear off….for a while, anyway! I’m asking you all to stick with me, and to please have patience with me as I continue along this journey. It’s a long road but I’m suited up in the armor of God and the devil is not going to win this one! (I’m adding one piece of armor, though, and it will be my DEET-free,, super strength tick repellent!)
One subject that’s been on my mind a lot lately is uncertainty. More specifically, uncertainty as it relates to Lyme and the Lyme cycle and the smattering of new symptoms and old symptoms that seem to have no rhyme nor reason other than they are part of Lyme and that allows them, by nature, to do whatever the heck they want.
But uncertainty. I am a person who, for my entire life, has despised any situation where there is a lack of order. I like to plan things, I like to know exactly what is going to happen before it happens, and I like to be able to be prepared. (The one exception is Christmas, meaning I HATE ruining Christmas gifts, etc., because opening surprise gifts is where the fun lies as far as the gifts go.) To anyone who knows me, the revelation that I need order will not be a shock. I just think things are nicer when they’re in a pretty, logical order and organized and neat.
However I’ve learned over the years (the past 7 months in particular) that uncertainty is something I have to accept as part of my life right now. Lyme is a jerk of a disease and it seems to revel in throwing things my way that I am not prepared for. For instance: the full moon last week really had all of my symptoms in hyperdrive. I then had a decent day after the full moon had passed and I thought I was in the clear for a bit, and the past 3 days have been filled with absolutely unbelievable pain/fatigue/nausea/GI symptoms that have left me unable to get off the couch or even unable to really use my computer at all (except for right now).
I mention all that not to complain, but just to emphasize how I was feeling like after the full moon passed I was going to have a few good days and then I have been absolutely flattened by the Lyme bacteria mob. Which is where learning to accept uncertainty comes into play. No, I didn’t plan to be completely floored for the past few days, but it’s the reality and there’s no use complaining about it because it’s not going to change. I’ve found one of the most important and useful things to do when something pops up out of nowhere is to try my best to find a way I can capitalize on the uncertainty and flip the cards so it doesn’t set me back any further, mentally or emotionally. Like find a new show on Netflix or use the time I am able to tolerate my phone screen to look up the best detox methods for [symptoms X and Y]. Or just have a conversation with my husband that is not about Lyme or anything related to Lyme. Or if unable to do anything listed above, just going over one of my favorite praise choruses in my head over and over to help calm my mind and bring peace.
Lyme causes you to find ways to make the uncertainty into a positive experience and really helps you figure out how to prioritize the time you do feel well enough to do things you used to be able to do. And as strange as it sounds, I’m actually thankful for this–for the opportunity (even if it’s been forced on me) to really figure out ways to live my life in a way that is not overwhelmingly filled with negativity and a way that doesn’t require me being constantly attached to the technological world.
Thank you, God, for allowing me these blessings in whatever form they come.
And thanks, readers, for sticking with me. God bless.
I suppose starting a new blog, even one that is as topic-focused as this one, is always a daunting task. I also think that's why I've had this wordpress username registered for a couple of months almost yet am just now getting to the point where I'm taking time to write. There really isn't a "good" way to write the first blog entry on any blog site, I'm convinced. Or rather, there's no "right" way. Which frustrates me because with my personality I like to have clear cut, defined lines of what is right and what is wrong and well-established guidelines and expectations....which, ironically, is not what I cling to in my writing (nor did I cling to it particularly stringently in the 4 years I devoted to getting my English degree at my dream school here in my home state), nor is it a luxury I'm afforded in what I've come to refer to as the world of Lyme craziness (Or, if you prefer, the world of Lymetastic-ness).
As of tonight's writing, July 10, 2013, I have been given an official clinical diagnosis of late stage Chronic Lyme disease. Actually I was given the clinical diagnosis on June 11, but again I'll mention that I've been putting off this dreaded first blog entry for a while. We are still waiting for a few tests to come back re: Lyme diagnosis, but even if the tests don't show as many positive results as the Infectious Disease Society of America would like to see before they will officially admit I have Lyme, the chronic Lyme diagnosis still stands.
I'm sure in the coming weeks, months, years (sadly, yes, probably years, but that just means you get to enjoy my ramblings longer!) I will delve into my past diagnoses, my current situation, and what exactly has brought us to this point, but for now I will wrap this up just to keep it as succinct as possible while still pseudo-informing you of the nature of the blog you have already begun to read (that is, if you read that sentence you were probably reading the rest of the entry).
I hope everyone who stumbles upon this finds that while I'm sure I will at some points be discussing the negative aspects of living with chronic Lyme disease (there are plenty), my overall message with this blog is to share with others that hope is out there about there are doctors who will treat you and that I have full confidence God will bring me through this like He's brought me through everything else.