In the life of Lyme there are always unforeseen difficulties that stop you from accomplishing the things you want when you want. With that said, this is a post I intended to write, review and publish back in May … and it is now approaching the end of August. I hope that moving forward I’ll be a bit timelier with my posts, but as you start to read you’ll also notice it has been very difficult for me over these last six months. My mind is set that there is no where to go from here but up, so with that I do expect I’ll do a better job of these in the future.
May is a month that marks many things, one is Lyme Disease Awareness Month and ironically it is also the month I was bitten. May 2017 marks 3 years since I was bitten, which sounds like a long time when I think of all the things that a person can do and the things can happen in the span of three years.
In truth, I have found that the slower I am, the faster time is. It was only a couple of weeks ago when I realized we were coming up on this life-changing ‘anniversary’ of sorts, it isn’t something I happily count like the years I’ve been on this planet, or the years I’ve spent married to my best friend. If you know someone with Lyme or suffer from it yourself, you’ll understand it took me far longer than 60 seconds to determine how long, how many years or months that it was since I woke up with that life-changing insect bite.
What I mean by this a running joke referred to as “Lyme Brain” leaving me unable to do the very simple math to determine that from 2014 to 2017 makes three years. On second thought… I don’t think my math skills (which I previously would have bragged about) are the problem. The problem lies in what I am willing to believe; it doesn’t seem possible that it has been three years! How could it be? How did I lose so much time? Surly a person can’t misplace or forget the past 1095 days, where did time go? It just doesn’t seem possible that my calculations are correct and three years have painfully flown by. To accept my simple math meant to accept the reality.
After the confusion about time dissipated, I started to feel something creeping up inside me … sending my stomach into knots and stealing the air from my lungs. It was sadness. It feels like a tiny piece of me was abruptly taken. In these three years I’ve gone from “marathon-running healthy” to “medical mystery” then finally I realized I was a very sick person. I took a moment to actually stop and wonder how many days, weeks, months or years that this has taken from me. Borrelia burgdorferi (the bacteria that causes Lyme Disease) isn’t just a stealthy invader who has morphing super-powers that allow it to continually disguise itself from the immune system in order to ensure its own survival
… it is a thief.
It steals your body and your mind. Memories start becoming blurry and far away, locked in a place where you know you have the key – but you’ve lost it. Or maybe it was stolen too? It steals time with friends and family – there is only so much you can do when you’re bound to the couch or bed, time spent socializing can be counted on just your fingers and toes. It steals your savings and your livelihood, taking away your means of contributing to the world around you.
It isn’t all lost. When you lose something you also find something.
I’ve found a lot over the last three years and learnt many lessons along the way. Some people tell me that I am brave, or they’ll say: “I don’t know how you do it?!” but the answer is simple:
it isn’t bravery, I do it because it is the only choice that I have.
I suppose I could choose to be angry or curl up in a ball and wait for it to be over. I have those days. The first four months of this year has given me more of those days than I’ve had over this entire illness. The longer it goes on, the more you get worn down and the lessons won’t stop because you’re having a rough day.
We have had many struggles this year, if my own health (or lack of) hasn’t been enough to deal with, the stress and daily wear-and-tear on caregivers takes a huge toll. For me that is my ever-amazing husband, who’s had his share of health crisis’ this year too, most definitely brought on by far too much stress. Together we own a business, which isn’t a walk in the park on the best of days, but it has been a challenge for us this past year and held together by the help of family and great staff… but even with that this last year was one of challenge after challenge, each weighing you down a little bit more so that you’re just barely keeping your head above water.
The worst feeling is to watch someone you love struggle and not have the tools to help them; we’ve been watching each other tread water for a very. long. time. Sometimes you sink a little too far down before finally coming up and taking a breath.
Another lesson is that I need to take my own advice: you can’t hide from what hurts, you have to face it and then let it go. Holding onto hurt and anger isn’t just bad for the soul, it is toxic. In business it is customer relations and at home it is your friends and family. We have had customers who’ve caused too much anxiety for both of us. I’ve lost too much sleep, waking up three hours after going to sleep and jumping out of bed thinking I need to go do something about it, make a phone call or draft an email. Or you wake up to dreams about the friends who’ve made sudden or gradual disappearances from your life. Surely all these people must be kind and caring, they wouldn’t knowingly hurt someone else?
One of the reasons the first four months of this year was so hard on us was because we were both under too much stress and pressure it felt like there was no longer a choice between ‘sink or swim’. I was sinking, very quickly. We both were. I experienced a lot of anger for days on end. I wanted to yell at someone, I wanted the words I said to cut so deeply it would leave scars. Who was I turning into? I felt very alone, hurt, sad and abandoned. I knew these feelings had to be dealt with, harbouring them would only lend to more suffering that I didn’t need to put myself through. My health was rapidly deteriorating again.
There it was…
The fictitious wall. We’ve all heard about it, and no, I am not referring to “The Wall” that the news often reminds us of that will dissect the borders of two countries South of here.
The wall was something I was happily passing by without incident for a long time. I once said to one of my online Lyme buddies that “things are too simple … I have to hit a wall eventually, right?” And I did. I might have had help from others, a slight nudge or a push – and I was allowing it to happen. After a couple months of peeling and scraping my mangled body back off that wall I realized no one had the power to do this to me. It was my choice, and I had to choose to stop carrying that anger and sadness with me; if I didn’t my body wouldn’t heal.
So there it is. If my wordy analogies weren’t enough for you, keep reading and I’ll try to summarize how I’ve been doing over the last while during treatment. It gets hard for me to keep the timelines straight so I’m going to break this down month by month.
In December 2016 we go back to DC and see my LLMD, things are on track. I still felt like I was hit by a garbage truck, especially when I am on meds and for the following 4-5 days after treatment stops. I push like hell to get through the Holiday season, trying my best to put on a brave face, look like a normal human being who isn’t fighting an internal war – and I make it… caffeine induced holiday cheer!
Seeing friends and family nurtures the soul, but the caffeine wrecks havoc on my already injured nervous system. But I ignore it. It can’t be that bad, right? We end 2016 by celebrating with one of my oldest and greatest friend. It was a great night and we took advantage of the chalkboard photo-prop by writing (and I am paraphrasing to remove the obscenity) #F.Ck2016 and posing for a picture. Sorry gran, I contemplated a more lady-like way of expressing this… but I couldn’t find anything that captured how we felt when we wrote that sign.
As I mentioned, the beginning of the year was rough. At my December appointment I’d gotten the go-ahead to slowly decrease some of my meds, the ones that had been managing the neurological symptoms and pain. My thought was that if I was in excruciating pain before treatment, then after 9 months of IV therapy the pain should be gone, right? Though I hadn’t decreased by much, that in combination with the stress we had in our lives resulted in a real life deja-vu. I lost my ability to walk and move again. Stephen was carrying me around constantly. This was defeating, heartbreaking, confusing and scary. I felt lost and didn’t know how long I could hold on like this.
This also coincided with herx-like-hell treatment protocols meant to eradicate the bacteria that I’d never agreed to play host to begin with. I spent my time in bed, feeling like I kept sticking my finger in an outlet, vibrating with electricity. It was all out war. This time around I start vomiting more and more. I spiked a fever of 40C/104F that lasted for days. I would get so cold my teeth would chatter, then start sweating profusely. We had to make a trip to the ER to have blood cultures drawn, just to be sure I wasn’t septic. Thankfully I was not … it was (just) a herx.
At the end of February we’d made another trip back to Washington, and simply put … I am a bit of a hot mess. It was decided that I had a little too much going on and my body needed a break. For the next 6-7 weeks I was on a ‘bridge’ therapy to allow my body time to rest, I had to re-introduce the meds that we had decreased and rest. Apparently my nervous system took a massive beating from the infection and still needs a long time to recover.
We took advantage of the break in treatment and at the end of it made a trip West to visit friends and family, we needed a break from reality … and thought it was possible to get one. We enjoyed every minute of our time visiting with everyone but it wasn’t easy for me. I had some bad days at the end of the trip after pushing my way through, courtesy of too many Americanos and shots of espresso. Clearly I didn’t learn the first time.
April brought a new round of treatment, finally I could go back to killing these intruders! I still hadn’t felt I’d gotten back to where I was in the fall of 2016, but it was time. This time I was on oral antibiotics only; I still have my central line in place … at the beginning of June we had a consult with my LLMD and the plan was to look (again) at if it was time to remove the IV or if I’ll require another round of IV therapy. The first round of oral antibiotics still led to some massive herx reactions; they seem to be getting worse with time, which makes sense as treatment started slow and steady and has worked its way up.
I’ve been managing a few good days in between the not-so-good. I usually go full throttle when I’m feeling OK – I try to catch up on lost time only to crash harder the day or two after. It is very hard to find that balance, I take it one day at a time, but still struggle. I’ve learnt to try to keep my mind from swinging like a pendulum, keeping it out of the past where I can’t change things, and away from the future because it is too difficult to plan for. Trying to stay present helps, after that there is just no other option than to keep swimming through these dark, angry fish-infested waters.
The lesson, or at least I think the lesson is (I’m not even sure we’ve learnt it yet?) is that to swim to the other side of the ocean, you have to sink a little too… and maybe get bit by some angry fish along the way.