This Lyme Disease Life is a Tricky One Indeed!

I shared in my last Blathering – Reflection. Pressing Pause. Hopefulness. – that I was taking a little medication vacation.  I’m approaching month three of pressing the pause button on my Lyme, Babesia, and Bartonella treatment.  While I do not recommend anyone stop treatment before reaching (hopeful) remission, life circumstances dictated the need for me to take a few steps back – and simply breathe.

This pause, which was strongly suggested by my Lyme specialist, has proven to serve many purposes.   One in particular, a much needed sanity revival.    Achieving true sanity might be highly debatable – ha!, but a little space from the harsh realities of this long health battle has been nice.   Somewhat peaceful and calming to think – or not think – about anything other than this sickly body every second of the day.   Even if only temporarily.

The thought of taking this zen-like experience and turning it into an actual vacation – WOW!   That might provide true sanity.   If only I could share photos from a sabbatical somewhere on an island in paradise:  me all fit and tanned, laying beachside, umbrella drink in hand, and Pablo – the cabana boy – fanning me with a large tropical leaf.   Snap out of it girl!    This is real life.   No jet setting island hopping happening here.   Simply more of the norm:  me sporting frumpy clothes, reclining under a pile of blankets, drinking lemon water and detox tea, and Eddie – the cat – snuggled atop my lap.   So, it’s basically been the same as a vaca in paradise.  Umm….negatory!

I do, however, have the luxury of a part-time cabana boy.  My handsome hubby – not named Pablo – is awesome at bringing me coconut water when I crash.  So there’s that!

Anyway…back to my pause.

I truly feel my organs are shouting “THANK YOU!” for this break from the continuous heavy doses of antibiotics.  Goodness knows it’s been a welcomed holiday from the demanding regimen of my treatment protocol.   And how thankful I am for the mini-reprieve from what seemed like two years of non-stop herxing!

Early on during these past few months, my debilitating fatigue along with a few other symptoms lessened.   This was such a blessing.   I experienced some really good days, where I was able to push myself further than I’ve been able to in such a long time.   The hubs and I took a couple of walks around the neighborhood without me needing to stop and rest.  Plus, I had a stretch of three days – in a row – where I was flitting around town like a real human.  It. Was. Fabulous!

Now, those awesome days were promptly followed by a day(s) or week(s) of being back down in bed, but what a blessing for some normal human-ing.   I mean seriously people, upright and active!   Those kind of moments are pure gold for this Lymie.

Thankfully, I was able to share most of the up days with my Dad.   Even snuck in a date night with hubby, and was further blessed by family visits on three separate occasions.   If you follow me on Instagram or Facebook, then you might have seen a few family pics showing off our beaming grins.   It may seem silly to some to post so many photos of me eating out at a restaurant, shopping, or driving my car.  But these were huge moments for me. Celebratory events that I was able to share with people I love.  Photo worthy for certain. Especially the selfies with my 91-year-old Dad.    Oh, Momma, how we are missing you…?

So, having shared the wonderful moments I’ve been blessed with over these past few months, there still remains the side of daily life that doesn’t always make it onto Facebook or Instagram.   Reality.   The trying, hard, raw, emotional, dig down deep, in your face, these diseases still suck, kind of real life.

As I strongly feared, my Lyme and Babesia symptoms decided to rejoin the party – intensifying, and with a vengeance.   The past few weeks, I’ve basically been smacked down by a major flare, which kicked into high gear immediately following the last family visit.   Add in a nasty cold/virus that hit our household.   It’s definitely not been a barrel of laughs around here lately.

My fellow chronic illness peeps know all too well, when we feel good we can easily push ourselves a little more than we probably should.   Sometimes we end up paying a hefty price.   Well, hefty schmefty I say!    I knew I would push myself too hard.   I’m stubborn.   It’s in my DNA.   But having energy is such a rarity and feels heaven-sent.    So, I am more than thankful for the precious time and energy spent with my Dad and family.   These moments together are pure blessings.   Making happy memories tends to trump risking a health flare – almost always!

When living life as a chronically ill person, every choice or decision you make has to be evaluated around how the intended outcome will affect you and your health.  This becomes such a difficult balancing act, especially when thinking of yourself first goes against the very heart of placing your family’s needs and desires before yours.   But the reality is, you have to keep your health as a priority in order to function.   “Do I have enough energy to complete a certain task or run an errand before my body crashes?”  “My immune system is already compromised, am I exposing myself to too many germs?”  “What if someone has a cold or sneezes in my direction?”   There are a million “what if” scenarios that might run through your head.   It all can become so overwhelming.  Sometimes you just have to step outside the protective bubble and live a little!

That’s what I did.  I let my short pixie hair down for a few weeks, and it was grand.   Having my symptoms calm down a bit was such a blessing.   If only I had the ability to pause time not only my treatment.   I would love to bottle up how amazing I felt for that brief period of time, when the herxing stopped, and before my symptoms started to rear their evil heads once more.

In the back of my mind, I was hopeful that when I paused my treatment I would notice improvement – and that it would last.  This would have given me such hope that I was ultimately winning this arduous battle against these diseases.

I’m somewhat numb right now.   I know that I have to keep fighting these bad guys, but I’m unsure of the appropriate plan of attack from this point forward.  So much reading and researching various treatment directions to consider.  Trying to figure out what path is best for me is tricky, to put it quite lightly.   What works for one, does not necessarily work for someone else.   And the claims of being able to “cure” Lyme and coinfections – well – anyone can sell you snake oil.

When you are battling complex illness(es), searching for the right healthcare provider and treatment plan can be overwhelming and a down right maddening experience.   But it is important to be an educated and pro-active patient.   If we don’t look out for ourselves, who is going to do it?

I am back to riding out the wicked wave of Lyme and co’s miserableness.   Waiting for my next doctor appointment in a few weeks.   Together we will map out the appropriate direction to take.   One thing for certain, I refuse to give up.   Remember, I’m stubborn!   I will continue to cope with the daily struggles that come with these diseases – and remain hopeful.   It’s so cliché, but taking it one day at a time is all any of us can do.  Right?

Before I close, I would like to take a moment to thank those of you who choose to follow along with my rambling journey.   I try to add a little touch of humor to the not so funny aspects of life.   This world around us can present itself in such a dark and gloomy fashion.   Add in the personal challenges of coping with chronic illness.   Depression overload!!   I prefer to keep my Blatherings as lighthearted as possible, but still keep it real.   I’m a glass half-full kinda gal, and I hope to reflect this in my blog.   In my humble opinion, maintaining a positive outlook as we face each new day is good for the soul.

Until my next Blathering – may your troubles be few; facing them with an open mind and a faithful heart.  May we all keep moving forward!

Blessings to all!

Terry ? The Blathering Lymie

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