There's a tag line that circulates around the chronic illness community. A catchphrase of sorts--a statement some may consider "cutesy" or "cliche," but nonetheless conveys a message I'm willing to bet all who deal with chronic illness long to make known:
Now, I'm adventurous enough to assume (yes, I know, assuming is bad, and I don't mean to make a donkey out of anyone) that there was at least one person who read that statement and had at least the passing thought, "Yeah, Becca, I know you're sick. You blog about it, you posted on facebook about it until you deactivated completely, and you use [insert any assistive devices here]." If you had that thought, don't worry, I'm not singling you out as a bad person, I'm merely using that thought process as a starting point for a deeper explanation.
I used to be so incredibly addicted to my phone/computer. Seriously, it's almost embarrassing when I think about the copious amounts of time I used to waste on electronic devices. I did not go anywhere on the Centre College campus without my computer (albeit I had to use it to take notes in my classes, so I usually had the bag with me, but no matter where else I was, my computer was likely at least sitting out and plugged in). Once smartphones came out, there was no hope left in the world, because those social networking sites and miscellaneous sites with videos/music were with me in a much more convenient way. 2-minute break at work with no customers in the store? Quick, everyone check your Facebook app! Standing in line at the grocery store? Hurry and log onto Twitter and see if anyone has posted any entertaining 140-character snippets! In the middle of a conversation/movie and feel your phone vibrate? Check that text message NOW so you can immediately reply to it because the person sending the text will hate you if you take too long, plus it's important and you simply can't focus on anything else until you make sure you've given that text message the love and attention it deserves. I'm not joking, people. It was bad. So. Embarrassingly. Bad.
Which sort of brings me to my next point:
"No, actually, right now I'm worse than I was a few months/a year/etc. ago because I'm actively treating multiple diseases that have infiltrated my entire body for over 20 years and I still have a long road ahead, during which time I'll have even more periods where I'm worse off than I was several months ago because in order to get rid of these diseases and infections I have to actively do treatment that kills them, and when they die they release endotoxins and neurotoxins and all kinds of fun stuff which leaves me in a somewhat constant state of herxing--which, by the way, means I will feel worse before I feel better because I have to endure the die-off of bugs and the release of toxins that affects every tissue in my body if we want to effectively kill said organisms for good."
See? Not exactly an explanation that's easy and definitely not an explanation I have energy for each time I'm asked, and the explanation above is as watered-down a version as I can make it if I give a real answer to how I'm doing and if I'm making progress. So as many of us do, my husband included, when we're asked that question nowadays, we usually just say, "Honestly things are bad right now but we're on the right path." And we leave it at that, unless the person asking is one who truly understands the ins and outs of this illness or who wants to hear all the details. Or even more than that, someone I know who not only wants to hear the derails but with whom I actually can devote energy to explaining.
I'm running out of steam as I write this, so unfortunately I'll have to finish in another post at a later date (this has been saved in my drafts for almost a year now already), but here's the bottom line:
If I don't answer your text, if I don't pick up the phone when you call, if I don't feel like having a conversation or telling you how I'm doing, if I make and cancel plans (even if the plan consisted of a short phone call) with little to no advance notice, or any number of other things that are generally regarded as unacceptable in 2015, I want you to know this:
It's not because I don't want to communicate/spend time with/talk to you, it's simply that I don't have the energy to even leave bed 90% of the time, and what little energy I do have, I try to save for the moments I may be able to enjoy a TV show with my husband, take a shower (even though I have a shower chair this is still a major task), fixing my own smoothie (or at least eating it on my own with a spoon instead of having to be fed by someone else because my strength isn't there, singing along to praise music/writing my own christian hip-hop lyrics (more on that at a later date, as well), and other daily activities. I care about you and your friendship, I'm happy you care enough to reach out and/or ask about me, I'm fortunate to have so many rather warriors lifting me up, but I simply do not have the energy to hold conversations right now.
I write this with the best of intentions--I don't want to hurt anyone's feelings by making them think their concern and connecting with me is not appreciated, but I also want to be very honest in saying that no, I will not always be able to respond to something you send me. One day I'll be back to my old self (except likely a more mature, wiser, life-experienced self), and I'll be able to talk and enjoy things like attending church, hosting game nights with our friends, going ice skating, and replying in a timely manner. My post-Lyme bucket list goes on and on...the energizer bunny who's going and going will one day again have nothing on me, because like over said many times, I know God is healing me.
But at this point in time, I'm not a person to come to if you're looking for an instant reply to a text, when you want to go out and do something like see a movie or eat at a restaurant or anything that involves me getting out of my house or bed--and that is okay for now.
That's okay because this is a temporary situation. I'm not even just talking about Lyme and friends, either, I'm talking about our time on this earth. It's temporary, and all we can do is to make the best we can out of every moment, and take each day as it comes, one day, one hour, one minute at a time, until the day of healing (whether on this earth or with the Lord above in heaven) comes.
Thank you all, sincerely, for taking the time to read--but more than that, for taking the time to understand.