Lyme and a Coconut

chronic lyme disease with a taste of nut

The Air Above and the Water Below

extraordinary destiny

There are a few reasons why someone writing a lyme blog would not write or update in a long time. The reasons are, in my opinion, as follows:

  1. They have recovered/improved and are living the high life again
  2. They have worsened and are living in such misery that they cannot even muster up the drive to type up a blog post
  3. the server’s gone down

My reasons are both #1 and #2. What a strange combination of reasons, no?

Part One: A Month of Agains

For reasons I can’t understand, the first half of October was spent doing things I haven’t been able to do in over a year. I went to a movie theater again, ate out at a restaurant again, went on a date night with my husband again, went to a family function again, got out of the house again, went to the grocery store again, went to many stores again, so many things again and again! I was kicking up my heels, albeit cautiously, and feeling so incredibly grateful for this amazing reprieve of symptoms.

Everything seemed better. My body had more energy; my mood was much improved. I still struggled with some pain and much fatigue, despite more energy (ironic?), but all-in-all, I felt more like myself than I have in over a year. What a blessing!

The most joyous change was that my neurological symptoms had all but left me. I wasn’t getting seizures or internal shaking. I wasn’t hearing voices or seeing floaters. How excited I was!

So although I meant to write and update y’all, frankly, I had much better things to do – like living. 🙂 So that is my reason #1 for not writing in a long time.

When you are chronically ill and a reprieve of more than two days happens, you get excited. But there is also the flip side, the ugly underbelly where you look around all possible corners, just waiting for that lyme boogyman to jump out from the shadows.

Part Two: Submerged Again

iceberg

My second reason for not writing is a sad one, an embarrassing one, one that I feel much shame and anger about. Just as sudden as the reprieve hit me, the relapse walloped me upside the head. And of course the relapse wasn’t happening in a purely physical way that would be very easy to communicate and easy for others to understand. No, that would be too simple and visible . Sure, some neurological symptoms shook me around for a few days, but the overall worsening symptoms that told me something was greatly amiss inside my body were psychological.

SONY DSC

Psychological problems have a stigma. People hear mental illness and they think of depression, bipolar, schizophrenia – and well they should. People don’t often think of those labels as symptoms, though. They are symptoms to me of the Bartonella that replicates in my body as well as the Babesia and Lyme. The Bartonella is the main culprit and many lyme literate doctors familiar with Bart and psychological/neurological lyme will tell you that depression, rage, suicidal feelings, poor impulse control, and a host of other psych problems are a huge factor in this.

So what do I tell my family who has to live with this Barton-hella (I’m not the one who made that up; that’s been a joke for as long as I’ve read about Bart)? Sorry, sweeties, blame it on the illness? No, my loved ones are all about taking personal accountability for one’s behavior. I’m the one who taught them that!

And this is where things get pretty personal. leg

My reason #2 for not writing is that I was getting worse. I am worse. This very night, I am experiencing a level of depression and rage that I am incredibly uncomfortable with. I distinctively feel like a different person. The words they hear are not mine. The person they see before them is not me. The body that walks around is not me walking around. The thoughts that are careening out of control in my head are not mine. The venting I did in my journal – not my true thoughts.

I’ve not written because I was ashamed and scared. And suddenly things seemed so very bad that I could not even write it in my blog. my face

Tonight I am writing for two reasons which are as follows:

  1. Things got better. It can happen. I don’t know why it did, but it did. Maybe it was going off Dilantin, going off and then back on Acycyclovir; maybe it was starting Clarithramyacin. Those are the only changes I made. I have no earthly idea why I improved. But it happened.
  2. The second reason is because I got worse. And tonight feels impossible to get through. But I can’t sit in my fear and shame any longer and hide. I can’t pretend this isn’t part of the journey I wish to share and one day overcome. My aim is to the other side of this and be able to point back to all the times I didn’t know God was here…but He was. My aim is to share hope with other people newly diagnosed with lyme and tell them – see? It can get better. It’s a long road, but it can happen. So if I want to do that, how can I hide out in my bed and not share what I’m going through this very instant? The lies that infest me that tell me no one cares, I’d be better off running away and living in a cottage in the Colorado mountains. That I am only poison to my family, not the stable, maternal figure I wanted to be for them years ago. That I ought to run away because how could my spouse possibly continue to put up with me, much less love me?

A very good resource page about Psychological Lyme/MSIDS complied and written by my lymie mentor

So suffice it to say, distraction is a good tool. Writing this blog entry gave me something to do, a positive spin to take, and a way to express myself through writing – something that is quite necessary for me.

I am under no illusion that when I hit “publish” I’ll feel a whole lot better. I still can’t feel my feet, my stomach hurts, I still have negative thoughts ping-ponging around my head wanting to pop people in the eye. So I will most likely remain in the bedroom and watch Downton Abbey (my greatest vice lately).

You must find some comforts when chocolate is taken away from you (and all sugar).

So thank you for taking the time to read this not-so-happy blog post. As my mentor says, the lyme journey is a marathon, not a sprint, and we just have to take it a day at a time, trusting God entirely along the way.

hopejoy

— lymie out…

the self you are all along

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