Will There be Cake?

I have Lyme. I’d like to not have it anymore. I also just want cake.

Stuck Between Really Sick and Still Sick

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 seizures.

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!

Better sleep.

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!

On the other hand, now I get to walk around with my invisible suffering while everyone thinks I’m mostly better. unnamed (1)

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…

giphy (1)

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.


3 comments on “Stuck Between Really Sick and Still Sick

  1. cassandramariebarnes
    November 21, 2016

    Your essay made me feel less alone and I related to just about all of it, especially relying on spouse (?–don’t know who D is so please pardon the presumption) to do the dishes, which I hate people knowing about because it sounds too convenient, like a relative I had way back who disappeared after family dinner and wouldn’t rejoin us until all cleanup was done. I feel like that family member. I’d be thrilled to do my own dishes. This is a change from one who used to cycle multiple loops around her home city just to relax, and make charcoal drawings 4-7 feet tall, weld steel, and spent hours a day in the snow taking photographs. Etc… I enjoyed your writing style, natural voice, and the sheer familiarity with things I’ve also experienced, felt or thought, which were so authentic to me that your words jumped off the page. I randomly found your essay while googling: “crushing back” + pain + ribs + “lyme disease”. I have been in tearful agony for many months now, despite 2.5 years aggressive IV antibiotics plus supportive health therapies and many, many years now of cognitive therapy. My peripheral neurological stuff has really calmed down by 1 year IV abx, though are not gone, and I’ve charted many more improvements in my pages long list of symptoms. But in other ways, I’m getting worse, such as the back pain becoming physically crippling. We had to aquire a transport chair and are struggling (with doctors LISTENING, even my LLMD) to get a motorized chair so I don’t have to keep, for example, letting my liscence expire for being unable to stand in lines at the DMV (and I was already self limiting my driving based on how bad my cognitive stuff was or was not so bad day to day). And, so that I have options other than ‘too bad’ if I mentally want to, and can handle, being out and about yet simply cannot. 95+% of the time, even with a cane, I can go no further than a straight-shot errand, or cannot handle walking any more than the distance from bed or couch to the bathroom. All my friends dropped me from their radars, because I’m a far cry from the hard-working, productive and independent person they originally befriended. People didn’t understand why I declined invitations consistently (and did so while wishing someone would reach out and say hey, buddy, is there a way we can just hang out together that won’t be an ordeal, gee wiz I’m just realizing this isn’t some deranged lifestyle you’ve subscribed to and you’re still the same person I used to think was worth seeking time with). People don’t understand why I often walk funny, always have to lay down, or go to sleep (sometimes involuntarily). Nor why I take forever explaining things, and go all over the place topically, only to get to the same statement: “Ugh… Don’t remember what I was trying to say or why we’re having this conversation.” If your Dr. J is the one who first comes to mind, I’m considering biting the bullet and getting into that clinic. I hope you have coninued to improve. Oh, and I also want cake. Thank you for your essay. (And to the person trying to spam for some clicks on hair crap by posing as a well-meaning fellow sufferer–go eat paint)

    Liked by 1 person

    • tarathackeray
      November 22, 2016

      Thank you for the comment, you had me nodding my head in agreement, shaking my head in empathy, and furrowing my brow in sadness that another soul is out there experiencing this, and finally, chuckling at your last line. The isolation and social abandonment is such a kick when we’re already down huh. I can’t recommend Dr J enough… I don’t believe that there is any doctor out there who gets every patient all the way better, but he is pretty darn good at getting people to as good as they can get. For some that’s 100%, others maybe 85%. I consider him worth every penny and mile traveled. Best to you!


  2. Marianne Rodgers
    April 7, 2015

    God bless. I was almost always invisibly ill. It is a horrible way, but Lyme seems to keep you from visibly aging. I am 72 and still do not have grey hair. Problem. I don’t have much hair. I take natural hormones, but it is difficult to get a doctor who will treat this properly. I love your sense of humor. I have been sick so long, I am losing mine. Here is a video I watch to cheer me up when I don’t feel like I can stand it any more. https://www.youtube.com/watch?v=Bpu0TIXzI1w This is my spring day.


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