NOTE: This was written in November, 2015. I’ve found it now, January 2017 in the drafts folder and reading it tugged at my heartstrings. Fighting Lyme was at one point, SO HARD and took so much WORK. My heart was SO broken when my actions of self care were interpreted negatively. The man I’d loved intensely for over 5 years left me over his interpretation of the change in my diet, routines and needs (but “not because of Lyme disease” he swore).
I saw him recently at a hip hop show. With him several paces behind me, I danced all night, I sang my heart out, I drank whiskey even. And I wonder if seeing me in a very different health state than he’d left me in, if he regretted at all the package he’d wrapped me up in back then. If maybe he reconsidered those permanent labels he affixed to my temporary status, for I am without a doubt leading a different life today.
In the end, it doesn’t really matter. My life is beautiful, and healthy, and wellness is FAR less work than it used to be. And the right kind of partner will find himself at home, regardless of my health status, in my heart of hearts… the one my previous partner just couldn’t see.
Regaining your health when you have Lyme disease is hard. And not just financially, emotionally and physically hard (though, those are very true, and all too heavy), for the purposes of this chat, I mostly mean that day to day, the pursuit of wellness is a lot of work.
I prepare all my meals with healthy foods from scratch.
I juice vegetables fresh daily.
I take walks to keep my lymphatic system moving.
I make deliberate time for meditation and cultivation of calm.
I don’t sleep well. So I try to sleep more.
I devote more time to winding down at the end of the day.
I take detox baths.
I sort pills. I sort pills. And I sort more pills.
I visit the pharmacy. Often.
I carve out deliberate “do nothing” hours or even days for restoration after long work days, big events, evenings out or taxing travel.
I arrange my schedule and space things out so as not to “over do it”.
I go to my Lyme doctor appointments.
I go to my primary care doctor appointments.
I go to cognitive behavioral therapy appointments.
I go to couples therapy appointments.
I go to lymphatic drainage appointments.
I even go to chiropractic and PT appointments.
This list is a LOT of work. When I was first diagnosed, and getting used to this new routine, it felt like a full time job. I mourned the losses brought on by all this additional responsibility and heavy necessity. Even still, sometimes, this load can feel downright oppressive. That’s a fair and very real reaction to my daily life with Lyme.
But most of the time, these days, I view these as necessary investments in my wellness. These are gifts I am giving to myself, to my body, to my mind, my spirit and my immune system. And they’re working. I can feel the results of these activities and I’m getting healthier month after month. Importantly too, I can feel the results of skimping on them whenever I don’t make these pursuits a priority.
Making this much space for me in my own life… it’s not easy. Mostly what’s hard about it is that it means saying no a lot more than I used to. No, I can’t go to the holiday Christmas party after working a 10-hour day. No, I can’t make it to that meeting across town at 7am after I worked till 6 the previous evening. No, I can’t go to that birthday party AND my family’s Christmas party all in the same day. No, I’m not strong enough to withstand a day of international travel, a day of birthday celebrations, two 12-hour work days and then still have the bandwidth to be a graceful, capable full time caregiver to a loved one in need for the next several days.
And that SUCKS. It feels awful. In my worst moments, I feel like I’m failing all of the time at everything. But in my better, truer moments, I know I’m doing my very best. And it’s good enough. It has to be good enough… because it’s all I have. I’m giving everything I have. A lot of that goes to myself, because it has to for now. A lot of it goes to my job, because it’s funding the whole treatment effort (not to mention my life). And, with as much as I have leftover, I still give to those close to me.
I know that what I have leftover to give to others… it’s not always enough for them. And that’s ok for them to believe, to say (with kindness), even for them to be upset about. I’m limited and I know that. I can’t meet everyone’s needs as a daughter… as a friend… as a partner. Not all of the time. And as hard as that fact is to accept, I do accept it.
What’s painful for me is the interpretation some people make of my inability to meet their needs. For the first time in my 32 years, as I set these important routines and self-care goals in place, I’ve heard accusations of being “selfish” and “controlling”. Those words are shocking. Those words break my heart. They break my heart because those words describe actions of ill intent and ugliness. They accuse me of demeaning the other… of not seeing their value and their worth. Those words accuse me of just not wanting to give them everything they need and desire. No. That is not what is happening in me. I don’t relate to those words at all. And, honestly, I find it so sad and disappointing, even wounding, that anyone who knows me well could interpret my limitations… my diligence in this quest to get well… in such a dark light.
In those moments, I remind myself that what someone else thinks of me is, at the end of the day, none of my business. If they’ve been given ample opportunity to see the heart of me, and instead see only their interpretation of my intent, that’s their choice to make. I have to respect that that’s their choice.
I am really pretty fortunate. The majority of people in my life have responded to my struggle positively, with curiosity and with empathy. I’ve formed some really strong friendships with the people who’ve made those efforts. And frankly, the people who went the other way… well I guess I’m probably better off without them. Or, I will be as soon as I get over my broken heart.