Honesty

I haven't been able to write for so long. I have a few drafts saved that feel contrived and not from the heart. I was just remembering something someone said to me today. I couldn't even remember who said it or why. Now it came to me. I was sitting in a chair in a class. Maybe I was squirming around, again, I don't remember. The woman behind me asked if I was in pain. I smiled and said I was okay. I knew her but just didn't want to get into it.

That is why I haven't written in so long. I just didn't want to get into it. Or maybe I didn't want to to try and find words for what is just plain hell. One or two sentences on Facebook somehow seemed easier. I try to stay positive most of the time and only "let it out" around those that know me very well. Plus, who wants to really hear about how I am? Does it hurt? YES - practically everywhere! More than I can ever begin to explain. The symptom list is so long that I can't even bare to track it for my doctor anymore. I  keep smiling and moving forward because I have no choice. I am too sick to stop fighting. There has to be something better at the end of the rainbow for me. I must believe that.

I wonder why I finally decided to write about this. Maybe because I want this blog to not only be a way to "tell people how I am," which was the reason I started it. Maybe it can be a memoir of sorts of my battle. Something to look back on when I am well. In the present though, even typing or writing or talking about this hell, is...well... hell. I think I need to bust through that though. I have been spending a lot of time reading about what other Lymies are going through. It has been healing for me in many ways, but also a bit of an escape. I can just listen to them complain about all their symptoms and not have to own up my myriad of feelings.

I'm so tired of being this sick, of not knowing what the future holds and having no clue how long it will take to beat this disease. I'm tired of not having the energy or any sense of predictability to plan for my life. And, at the same time I know these are just feelings. Somehow I am given the strength and resources to keep fighting. I must believe that the solution will show itself. There is an order here and it will be okay. It is okay, even if it doesn't feel remotely that way.

Thank you teenage daughter for showing me the light

It's time to write again. I wish I knew what to say. I usually have an idea or some thread to start with. I rarely begin to write until the thread is there. Tonight is different. The desire for this rather odd cathartic activity is present without the thread of inspiration. Maybe the thread of inspiration will come or maybe I will be able to process some of the rumblings in my head without any witty statement or metaphor to pull it all together. I think the chances of some lightening striking my head and something cohesive coming together are pretty slim.

Maybe not. I may have just been struck. Beside me is my teenage daughter. She has spent part of her day (that didn't involve texting, KIKing, FaceTime, Facebook, YouTube, email, Instagram, iTunes, Netflix or Hulu) drawing an amazing picture of an elf fairy walking down a path surrounded by darkness. Held in her hand is this beautiful bright sun. Aha...there is my inspiration. Thank you teenage daughter!

Okay, now back to the point (that is, if I can remember what it was). Hmmm. Oh yes, brightness being present within a sea of darkness. That is the best way to describe the last few weeks. I feel as if I have been immersed in this very dark, unknown, painful and scary illness. I have been off antimicrobial treatment (a.k.a. meds that kill the little $%^&$ bacteria) for over 2 months waiting to get strong enough to restart again. I am resting, detoxing, resting and more resting (and more detoxing). Also awaiting some strange and expensive IV therapy to arrive from Switzerland that will hopefully add an armor of protection around my cells so they don't get so affected from treatment like last time. Not working much and falling deeper into a financial hole. No more gift cards or house cleaners or meal fairies (so grateful for when I had them though). Now it is just me and my life. Keep putting one foot in front of the other. Inhale and exhale. Listen to the body. Be patient. Do what needs to be done with the family and keep laughing whenever I can. Headache is there all the time again along with her friends sore throat and back pain (and exhaustion of course). At least the sensory processing issues and all the other myriad of neurological problems have improved. Oh no --- I'm getting sucked into the boring details of Lyme again. I must extract myself. Just a minute.

Okay, I'm back again. Light being present in the midst of murkiness. That is what I am focusing on now. I must catch hold of the light and see it present at all times, even when I feel as if I can't see anything. I am not just holding the light. I am the light. It's so easy to just see the darkness when surrounded by sickness and a sea of unknown. Thank you again teenage daughter for showing me the light!

Progress

So often we judge our progress by what we think we have accomplished. Has there be improvement? Am I feeling better? More functional? Less symptoms? Stronger? I can think of so many instances (other than this oh-so-boring fight against this pain-in-the-ass disease) where this is how we judge ourselves and those around us.

This Lyme disease business sure is teaching me a lot. Progress just isn't always linear. And just maybe it shouldn't be judged "constantly." I recently stumbled upon a chronic Lyme support group online (which has been both disturbing and highly comforting at the same time). Someone said something to me that has really stuck, "Recovery is so long that it can be very hard to see an end and its also so slow it's hard to actualize to yourself that you're improving. You really have to stick with it and wait and reassess not every few weeks, but every 3-4 months. If you do that you'll notice the incremental improvements. We are all stronger than this disease. All it takes is belief, faith, hope, and patience. I believe that someday we will find a cure. I have faith in those I have chosen to provide me care. I have faith that God will support me through this battle. I hold onto hope that someday I will be well enough to do the things I love doing that I no longer can do. Above all, we need patience because the road to health for us all is long and slow. The last is the hardest for me. But I am learning. Two steps forward, one and a half steps back still equals progress." It's hard to remember this sometimes, but oh so true!

I am progressing even though I can't say on a day to day basis how much progress there is because I am inundated by the symptom laundry list of that particular day. Now that is comfort. And just maybe this is a better way to look at my family and the world. Patience really is a virtue and one we tend to lack in many arenas. When things seem "bad" we assume there is regression and when they are "good" we assume that is progress. It's just not that black and white.

I am learning all about the many shades of grey. Now that is progress.

Reality setting in

The pain in my hands is beyond excruciating tonight. The headache waxes and wanes. The anxiety for no apparent reason seems to be building again. Feeling nauseous and restless. Took a Epsom salt bath for the fist time in over a month. Hoping it helps with the pain and doesn't cause any herxing/die-off symptoms. Next IV treatment that may help these symptoms isn't until Tuesday. Wondering what tomorrow holds while attempting to stay present and breathe. Staying in the present and living minute to minute helps (at least that is what everyone says). It's hard. Tonight is hard. The reality of how difficult this healing process is, is setting in tonight. The reality that it gets much worse before it gets better and it can take years is setting in. It's really a hard lump to swallow.

Another breath.

I am thankful for so many steps forward this last week. The smallest accomplishments seem so huge these days. Really noticing all the little flickers of progress seem to help. But yet in the moment I feel sick...really sick and alone. I feel like this disease has enveloped by life much more then I ever imagined. Being this sick for this long is lonely. Really feeling the isolation and loneliness tonight.

Digging deep and breathing. Trust. This too shall pass.

Why are you still so sick?

Living with Lyme is hard. Trying to beat Lyme while attempting to live a full, happy life is really hard. When I went to this blog to attempt to gather my thoughts to write something coherent I noticed how infrequently I have written the last few months. This outlet used to be so healing for me. This is just another indicator of how sick I have been. I wish there was a way to explain the zillion symptoms that I have that come and go and sometimes cause so much havoc that just taking another breath feels like too much work. I wish there was away to explain how difficult this process is and how I wish that I could say "yes, I am feeling great" or when someone asks. I wish I could explain why I am "still not better" or why I "feel sicker then I look" after taking all of these medicines for all these months. I wish I could explain how scary it is to feel like I am blindly walking in a mine field not knowing what treatment will help or will it make me sicker. I wish I could explain how scary it is to have more money going out then coming in. I wish I could explain what it is like to not have any answers and to "still be sick." I feel isolated and alone. Friends don't call or connect like they used to. I know everyone is busy and I am not a joy to be around, even though I still try to keep a sense of humor....when I am not deathly ill at least. I wish I had words to explain the $#%%-ing unexplainable, but I don't.

What I can say is that I am praying like I never have before. I read online many others who have gone through/are going through very similar battles. I know this isn't in my head or my fault. I know I am not alone and that I am loved. I know I will get through this even though some days it may be hard to remember this. I am thankful to start this PK protocol (too complicated to explain) and I'm praying that it helps. I need to be strong enough to resume treatment of the Lyme and to treat the two co-infections that I likely have (Bartonella and Babesia or Bart and Babs as I affectionately call them). I wish I could explain what this is like and why I am not "better yet" but I can't. When you ask how I am I will either say "well" or "hanging in there" cause' the truth is just too hard. Ultimately I know I am well. The "real me" is fantastic. It is just this body that is struggling right now. I will get through this....repeated like the little engine that could :) I really hope this new protocol helps. I am getting early signs that it may be. Long may that continue!

Fill, Dwell, Drain

How to not loose faith? How to keep hope alive? How to believe you are getting better even though the body feels so awful and that awfulness just keeps changing and shifting? How to keep hanging in there?

These are just a few of the questions that have been rolling around in the head lately in between naps. Today has been quite interesting. I have had a lot of deep thoughts and contemplations. All of it seems to be about having mind numbing hope and courage, a tenacity for life, and ultimately the ability to be fluid. Flexibility seems to be key. This has been a huge stretch for me --- a place I need to flex my muscles and expand. It's happening no matter how hard I try to fight it.

Fighting illness is challenging. Fighting Chronic Lyme disease which is so complicated and the treatment is the opposite of straight forward is challenging beyond words. This phrase "beyond words" is something a say a lot. I guess that is because so much is beyond what simple words can convey.

Today I have remembered a lot of deeply inspiring times in my life. I have been blessed to have had so many life experiences that teach me the answers to those questions I have. I can't imagine how I would keep going without all these beautiful people that make up the fabric of my memories. Working with medically fragile children and the people that surround them (families, therapists, service providers of all walks of life) is like the icing on the cake. Whenever I want to shout "not fair" or say "enough already," all I have to do is take a trip down memory lane or look around me. I realized that today.

I also realized how desperately I want to be done with this disease. It has been 8 months since I got really sick again and began treatment. I really want to be done. But I'm not done and I don't have a clue when that will be. I want to have a steady curve of improvement and that is not what is happening. Instead I am on a roller coaster that seems to change every day, sometimes many times in a day.
I am learning to lower my expectations and find joy in the simple things, much like the families I work with do. You deal with what the day has delivered and make the best of it.

The last few days everyone wants to know how I am. They know I was so sick for weeks that I couldn't work or function without help. I look better, but how do I feel? Honestly, I feel crappy. Less crappy then the,"God please take me" crappy of a few weeks ago. Somehow through this "crappiness" my spirit and humor are returning. I feel less broken and more hopeful.

This morning I read about an 81 year old Vedic monk (Hindu saint) who has recently started needing daily peritoneal dialysis. He is still teaching classes, attending meetings and doing more in a day then most 18 year old youth could manage. How he described his dialysis really made me chuckle and think. Fill, dwell, drain. Very simple and profound words. That is really the lesson for life. Fill ourselves with knowledge, dwell on it/think about it in various ways and then let go. I really like this metaphor. This is one I will chew on for a while.

Lessons of the Bumpy Ride

Wow - what a ride this journey is. The last few weeks have been bumpy to say the least. It seems like my nervous system has just had it. Too much neurotoxin led to collapse on just about every level.

Today I am choosing to not relieve it and to instead see the profound lessons I have learned recently.

Rest

Let go of expectations

Trust that the help that is needed will be provided

Notice the background, patterns and triggers

Gentleness - with myself and others

Forgiveness - with myself and others

See that I am not a failure - I am perfect (with my imperfections)

Life is not linear. There are ups and downs, peaks and valleys. That is okay.

Let go of extremes - take the middle path

Sleep is so important! Especially when the nervous system is just fried!

Embrace fear. Embrace the mind. See what it has to say. Listen and adjust as needed.

More rest

More trust

More letting go of expectations

More gratitude

More joy