I have Lyme. I’d like to not have it anymore. I also just want cake.
Today I am in the middle of one of my “med vacations” that occur in-between my treatment weeks. Each month is two weeks on, two weeks off (generally speaking). Dr. J has continuously told me each visit that we “measure our progress during treatment holidays, not treatment weeks”, and so that is what I have been trying to do… despite how utterly disappointing I can find many of my treatment weeks. I’m talking, really? THAT symptom again? It’s been nearly a year… WHY are you back in my life!? kind of disappointing. Gah. That didn’t do it justice. Treatment weeks can really take the wind out of my sails. Grrr! I can’t explain it. I hate that about Lyme. Tara, just let it go. Anyways, so this med vacation is shaping up to be the best I’ve felt yet in my entire treatment.
No panic attacks.
Decreased cardiac symptoms.
Markedly decreased crushing back pain.
Markedly decreased crushing rib pain.
Markedly decreased shortness of breath.
No GI distress. Ok that was a lie. I’ve had some pain.
Improved tolerance for light and sound.
Started driving again!
Only one night of the tinglies in my hands and feet.
Dramatically improved energy. (I’m sure the crash is just around the corner. I’m so optimistic.)
Etc, etc, etc. Yap, yap, yap.
I’m still ill. And I feel it. You don’t need another long list of what I’m still dealing with. That’s boring. Unless it’s not? I don’t know. Whatever. All I know is that now, most days, nobody can tell I’m still sick. The PICC line is coming out this week. The medication schedules and supplement lists are slowly growing shorter and smaller. You wouldn’t see a disability by looking at me. I feel like I’ve entered this new phase. The phase of invisible illness. I’m conflicted. On one hand, yay! I’m getting so much better! Yay! All that money we spent on treatment is working! Yay! I am slowly coming back to life again! Yay, yay, yay!
I DO own a LOT of makeup. And let’s switch out pain-killers for seizure meds and benzodiazepines. This is the truth.
It’s not that I want attention. It’s not that I want you to feel sorry for me. It’s not that I want to look sick and disabled and have people touch my shoulder with sympathetic looks in their eyes. But being invisibly ill is just a weird place to be. You become kind of, well, invisible. People have moved on from your illness before you can. You still can’t participate in all of life that you want to. You still turn down most social events, or, if you go, you are the lame one in the corner nursing a cup of water and focusing on hiding your symptoms until you can go home. Perhaps you get a momentary reprieve and you can forget you are sick for a short bit until something comes in like a wave a says “NOPE”, that’s enough normalcy for you young lady! I visited my best friend two days ago. The visit was wonderful, it had me laughing non-stop for almost an hour. Do you know how dizzy and weird my head feels when I laugh? Or the pressures on my brain and light-headedness I get when I laugh? Nope. I hide it.
You start integrating some back in to your past daily routines with recovery… but it’s mostly not the fun stuff you missed so much when you were plastered to the couch for months on end. I am doing dishes now. So… that’s pretty exciting. I can clean our bathrooms now…. Pretty happy about that. But I can’t ride a bike yet. I can’t hike in the beautiful mountains surrounding my home. Going to a movie is riding the threshold of external stimulation tolerance, so that is hit or miss still. Ok wow, this is becoming super pessimistic. Six months ago I would have died to be able to do something like dishes. I am going to switch gears.
My point WAS… invisible illness afflicts millions of us Lyme patients. We look normal on the outside. We are treated normally by everyone around us. And yes, the emotional and physical love and support we received when our symptoms were too loud to suppress, is missed. Or maybe our level of illness was always just this invisible awfulness and we’ve always been missing that strong emotional support that never even started. It’s almost lonelier in a weird way. Oh my goodness is anyone getting what I am saying or are you all questioning my medications or something at this point. Agh!
When D comes home from work and I ask him about his day and he asks me about mine, what do I say? Um, by all appearances I look like I should have accomplished stuff. But I didn’t. I’m on the couch covered in blankets, trying to warm my ice-cold hands and feet, fatigued from no prior exertion whatsoever, achy, squinting occasionally from random shooting pains, trying to figure out why the inside of my head feels so weird and sitting along for the ride of 12 different muscles twitching and flickering like a strobe light. I mastered the art of symptom concealery months and months ago and so I know he’s wondering why my hair isn’t still washed or why there are dishes in the sink (ok confession, I’m still not doing them EVERY day), and it is hard to explain what doesn’t project a proof.
It is hard to explain what doesn’t project a proof. Yes. That is what I wanted to get to.
Lyme so frequently extends beyond outward proof. It is why our advocates are having such a hard time getting us recognition. It is why so many of us live alone in our heads with our unspeakable and indescribable symptoms. I will have Lyme for the rest of my life. What this means for my future health I don’t know. Do I believe I will achieve normalcy again? Absolutely. My doctor is amazing and is getting me there like he promised he would. Do I believe my remission will always stay that way? I’m not sure. Do I wonder if life or the freedom from “internal abnormalcy” in some way will never be the same? Yes. Do I worry about the impact this may have on me as I age or as things happen that may be a blow to my immune system? Absolutely. Lyme will follow me until I die. That is the truth. So today I sit here, feeling much better than I have so far, but contemplating the ways in which to navigate going forward sick, but not horribly sick. Sick, but not visibly sick. Advocating for a disease that now, for me, shows little appearance of a disease.
I don’t know what to do about this. Yes. I am open to suggestions.
Of course, if anybody does want proof (go ahead, make yourself some entertainment), just sit and make me talk to you for more than five minutes and my remaining brain infection and damage will present itself in no time…
I guess you could ask me to give a speech to the CDC or ISDA and that might work. However, knowing them… just no.
And by the way, D never complains about the dishes in the sink. Thank you D.