I have Lyme. I’d like to not have it anymore. I also just want cake.
This is not a post I’ve wanted to write.
Most who know me or have known me in “real life”, know that I am a very private person. In fact coworkers used to comment jokingly about how I never talked about my life outside of work so much so that it made me weird. Talking about myself is something I hate doing whether it’s in casual water-cooler office banter, among close friends, or also in more formal settings. So, yeah, newsflash, this entire blog goes against the grain of my very nature. I didn’t really want to start it. Even to this day, I frequently just sit in front of the computer, fingers hovering above the keyboard, agonizing over what to divulge. I have set up this sort of disconnect that I’ve maintained well over the years, one where I click “publish”, and then ignore the part about it now being public for all to see. A few times in “real life” I’ve met people who have read my blog and it comes up inevitably in conversation. It is a weird feeling for me to be confronted like that with the realities of my writing being public. Sitting in my home office alone typing things is one thing, but leaving the house and hearing about my blog is suuuuuuper weird to me. Thanks to everyone who’s only had comforting and appreciative words to say during those times otherwise knowing me I would have made things super awkward because of who I am as a person. I’m sure I did anyways, actually. Anyways.
So, that being said, why did I even start this? Why do something that feels so unnatural? I have one single answer. I believe God wanted me to. And I’m trying to say “YES” to God a lot more these days. The fruits of this blog have been overwhelmingly positive for me, so He seems to know what He’s doing. A few days ago I had a difficult day. Lots of Kleenex and texts to Dad and all of that. At one point during the day I felt that voice again… “write about this”. Ugh, “I don’t want to”, I responded. I really, really don’t want to. That would require I be vulnerable and admit things publicly that I am having a hard time even admitting to myself privately. Please don’t make me. *whine*
Well the voice didn’t go away and I’m trying to be a “yes” girl so here we are. I’m not even sure what to title this post. But whatever I go on to describe, I know others will identify with it and hopefully, perhaps even together, we can arrive at a place of purpose and strength.
These last few weeks I’ve been experiencing some uncomfortable symptom returns. Sleep disturbances, vivid and bizarre dreams, heart palpitations, anxiety I’ve never had before, discomfort and tightness in my chest and throat, feeling my breath getting taken away, my face flushing with the heat of a metal seatbelt buckle on a hot summer day that has me convinced my face is 100% red when really it’s like 45% red, my memory taking a dive again and even trouble pronouncing some words. The latter has made for some laughs but it’s like those kind where you laugh while simultaneously deflating inside… you’ve been there too I know. I’ve also been having some crazy meltdown episodes surface over the last few months that are brand new for me and include sudden, out of nowhere, horrendous gut pain, sweating buckets of sweat (the first time it happened D came in and asked me why my shirt was all wet), racing heart, profound weakness and faintness (i.e. I plop like a limp slug on the bathroom floor) and then if I don’t catch it in time (and by that I mean within 10 seconds), pretty violent throwing up. I am back to normal in 20-30 minutes and then feel my usual self otherwise. These “episodes” are awful and are terrifying and have me keeping lorazepam and Zofran in every single room basically. I HATE writing about this for several reasons: first, it seems truer when I actually put it down on paper. I’ve gotten to a point in my illness where I’m so sick of the see-sawing I would just rather ignore and practice some form of apathetic denial when things swing low again. Secondly, I get really depressed over the idea of a Babesia relapse because based on my relapse last summer, that guarantees me I’ll be on yucky malaria meds for 6-8 more months and get sick again before getting better, further delaying my healing. But thirdly, I feel like a lot of people watch my story and gain hope from my highs and I don’t want to muddy that up with my lows. I don’t want to discourage people. I don’t want to confuse people about treatment efficacies even further and I don’t want to get flooded with criticisms over my personal treatment choices. Maybe in some way, I also don’t want to feel like what I am doing is failing me. Gah! So hard to admit!
So for a few weeks I was ignoring my gathering returning symptoms and I was going on with my usual activities. But I finally realized a few days ago, as I lay in bed wide awake watching the outside slowly grow brighter and brighter in early morning incandescent light, that this was happening, this was reality, and I accepted to myself that something was wrong. It took me the entire sunrise to acknowledge it. I then got up and put that defeated feeling call in to my doctor.
The rest of the morning was spent, as I mentioned, with Kleenex and frustration and feeling like once again, Lyme threw me a “gotcha”, a “madeyahope”, and then kicked the prize away from me before I could grab it. The prize that I spent years suffering to be able to just see a glimmer of from a far off distance. I began to question my treatment – had it taken me as far as it could finally? Was it even effective? I began to question my body – was it even capable of a full recovery? I began to question myself – was I sabotaging my own recovery because I couldn’t yet figure out a vital piece of my recovery? I felt very lost, very confused, and very “stuck”.
It took a few days for my doctor to mull over my situation and come back with how I should proceed, so I sat with these feelings for an uncomfortable amount of time. And ultimately, the theory we are testing out is that regarding the recent symptoms over the last few weeks, I am just overdoing it in my zeal for the recent strides in recovery I’ve made combined with the warmer weather bringing me more opportunity to go out and be foolish with a still fragile system (I climbed a mountain a month ago in the summer heat… admittedly, there are smarter decisions I could have made). The sweaty throwy-uppy episodes he believes are a previously damaged and underactive autonomic/vagas response that is beginning to heal and pep up, occasionally pepping too much at times as it figures out appropriate nerve signals to send along new baby nerve re-growth. That sat okay with me, so I’m begrudgingly scaling myself back again and agreeing to another summer not fully utilized as far as having fun goes. Doubly hard when for the most part, you feel well enough to do it. But that wasn’t the point of my post anyways.
The point is that having Lyme is like being diagnosed with perpetually unanswered questions. It’s like that for you and it’s like that for me. None of us know everything. We are going to go through so much that can’t be explained. The human mind obsesses over unanswered questions and the cat and mouse game of Lyme is sheer exhaustion. There is no perfect treatment, there is no perfect treatment response, and there is no perfect path to healing. We are all just fumbling our way around in the dark and doing so in immense amounts of pain and discomfort – physically, mentally, and emotionally. It’s OK if we all ball ourselves up somewhere in the dark and just tap out occasionally. It’s also OK if things are going along great and then suddenly something awful happens again and you feel back to square one. I’ve had lots of those, none of which held me back long term. When asked how we are doing, there will always be “buts” along the entire healing journey. There will always be “good!” or “well!” laced with a negative attached. There will always be some ugly part that you will be forced to look at along with your positives. Most importantly, if I’ve learned anything about the nature of this journey, it’s that no single day or week or even month, dictates the true space you occupy on the healing ladder.
A month ago (about a day after this photo was taken from my mountain hiking) I came down with the flu. It was a nasty one and it lasted an entire week. It started as some itchy scratchy runny nose thing, progressed to this gross congested chesty cough, to migraines, to body pain, to conjunctivitis in both eyes, to sneezy sinus congestion so bad some would say I was a terrible person in a past life to deserve such a virus. Day 6 of this, I wake suddenly from a nap while home alone to the sound of frantic undecipherable voices in my head that are building and building in intensity and volume. It was actual sound in my head. I was actually hearing voices. I’ve never had this symptom before and it scared the living daylights out of me. This sound and energy kept building quickly in my brain and within seconds I knew I was about to seize and unconsciousness was imminent. Now I haven’t had a seizure in nearly two years, at least one that was discernible to anyone but me or that interrupted whatever I was doing at the time so this was incredibly alarming. I quickly called my husband while chewing a bunch of Lorazepam. He didn’t answer, so I staggered to the front door where paramedics could easily find me, and then called 911.
I’ve never had to call 911 in my entire Lyme experience.
Next thing I knew 6 men were in my living room surrounding me asking me questions, taking vitals, and pricking my finger for a blood sugar reading. Feeling quite embarrassed as I looked like a corpse on day 6 of the flu, not to mention I hadn’t washed my hair in just as many days and was in my most hideous pajamas (plus we’ve been over how much I DON’T want to be the center of attention), I assured everyone I was fine and declined to go to the hospital. Apparently I appeared quite out of it so they insisted on staying with me until my husband got home (I was able to send a quick text and he works 5 minutes away). Per usual seizure tendencies, I then needed to sleep immediately and slept the rest of the afternoon. I spent the rest of the evening devastated over this development. I told very few people. I am almost protective of my downswings to a fault and I certainly hadn’t intended on putting it in the blog, and I’m certainly not doing so for sympathy.
But there’s an important concept here. Had I decided to just use that day to determine where I was health wise, it would have been not only false, but THE most depressing thought of my treatment process to date. It would have destroyed the huge accomplishment I had made just a week prior hiking mountains. It would have annihilated any confidence I had in my treatment choices or my recovery. This is a trap too many of us fall in and in its worst expression, I think it causes some to turn from the very things that are working. The truth is, why WOULDN’T my body have had a little freak out moment. I didn’t have time to recover from my hike before my delicate immune system was taxed to the hilt with this virus, my nervous system was still very touchy, and I had been downing NyQuil along with cough syrup on top of my usual seizure and sleep medications. Sidenote, did you know seizures are a rare side effect of cough syrup? For weeks I thought that seizure was a huge setback when really it was my body simply telling me “Hey! We aren’t ready for all of this yet!”… and nothing more. There are SO many questions to ask yourself before jumping to horrifying and depression conclusions. Did you change something recently? Did you over-do it? Are you under stress? Try a new medication? Were you recently sick with a cold or flu or etc? Undergo a medical procedure… even dental work? And even if no definable thing can be singled out, sometimes Lyme won’t give you a reason, but that too, doesn’t always hold a negative significance, especially in the presence of other improvements. In most cases, these things don’t mean you need to jump off the track. And when I say this, of course I refer to that period of treatment where you are past the just pure decline of initial treatment startup where NOTHING improves and you only get worse. That herx, that ugliness, is healing too.
When something is wrong in our life, we tend to over-analyze things. We look at all angles and then we create more angles just so we can look at those too. We humans can be ridiculous actually. But if I could say one thing to you today, it would be to relax. Put things back into perspective when fear discombobulates everything. My recovery is not perfect. Your recovery will not be perfect. But that doesn’t mean it isn’t going in the right direction. Don’t take short periods of time out of context. Allow your body to re-calibrate. It’s going to trip up on things as it does so. Sometimes it will in a big way. Take a deep breath; go through a box of Kleenex if you need to, and then wake up for tomorrow and what tomorrow brings. Things will seem to backslide parallel to other things improving. It is all a part of the healing journey. Case in point, I’m no longer pre-diabetic anymore! My blood sugar has stabilized for the first time in years. That is a huge win because that means metabolic feedback loops are correcting. How easy it would have been for me to let other things overshadow that sign of recovery, not to mention the monumental sign of immune system recovery that getting normal colds and flus again is.
In closing, I learned a big lesson this week in that none of this can be described with rosy colored glasses. There’s no pretty snapchat filters for this illness and I was trying in some small way to make it seem that way lately as I’ve only been posting my accomplishments. I think I convinced myself that focusing on the positive only, was the right thing because really it just gave me an out from having to really bare myself. And yes we should be positive, but reality isn’t as I described, and I needed you to know that mine, along with yours, has the same bumpy road to our destinations. If you can’t identify with my journey, then I’m not telling it truthfully. And if I’m going to take the time to blog, you need both sides from me so that nothing “ugly” scares you in your journey enough to throw you off course. You know, to draw an analogy from the mountain I recently climbed, the trail was mostly switchbacks. Sometimes it dipped down, sometimes it was a steep incline. Some parts followed a cliff edge with a flimsy chain anchored to rock to hold on to and had me fighting back immense feelings of fear, and some were boring stretches of little to do but the grudge work of climbing. But mostly it was back and forth, up and down, back and forth, up and down. So is Lyme. Don’t panic and lose hope at the unexpected parts, they aren’t taking you away from the top.
Choose to keep going!
Btw, these pics are from Zion National Park, honestly the glory of God on earth.