progress and pauses...

Well, I've hit the threshold of my 'go slow' idea with the Cowden Support Protocol.  I just hit 26 drops on my most recent Cumanda and Mora rotation and I have been herxing for 2 days now.  Red face, swollen glands and throat, wicked headache, body aches, not sleeping well, fatigue, irritability.  Up until now though - up to 25 drops - I was doing pretty well!  As well as I ever do.  I was increasing drops about every 2.5 to 3 days.  Versus every 1.5 to 2 days like I normally try to do.

So...  will the theory still work?  Do I just need to slow down?  Maybe go from 25 to 30 drops by increasing by 1 drop every 3 or 4 days?  I don't know... I will continue to experiment.  I'm not going to drop down to 25 drops to get through this herx though.  I'll wait it out.  Lots of detoxing.  Water, smoothies, green juice, fewer grains, rest.  Grains really seem to trip me up.  Especially at dinner. 

Half an hour after dinner the last 2 nights and I feel terrible.  I don't know if it's from eating - and the extra energy my body must use to digest the food.  Or whether it would happen regardless of eating - as I tend to have symptoms worsen as the day progresses anyhow. 

Doesn't matter.  I'll keep trekking along and see if I can play with this to reduce the herxing.

After mentioning some of this to a friend yesterday, I had her ask me how I do this.  How I get through each day living with chronic lyme disease.  Trying to live while feeling like I have a horrible flu most days.  And just a mild flu on the few and far between excellent days.  I deeply understand the question - the suicide rate for chronic lyme is very high.  It's a hard disease to face day after day, year after year.

And I'm not entirely sure how I do it.  Or if I'm getting better at it. I hope so. There is less panic than during the time I was misdiagnosed, and also less than during the first brutal six months to a year after diagnosis and starting treatment. But I am better physically now than I was then too.  Which makes it easier to keep it together emotionally.

I take things a day at a time.  Because thinking about the future and the past can both freak me out if I am not careful.  There is so much grief, and there are so many unknowns for the future. I do know that I like life and I don't want to give up.  I'm not ready to be done yet.  It's the hardest thing I have ever had to do - facing what feels like endless days (and often endless nights) with symptoms that are very uncomfortable at best and terrifying at their worst.  And of course you never know, one day to the next, what you'll be facing symptom-wise.   Sometimes I can give an educated guess.  But generally they continue to surprise me.

After plenty of thought, I finally realized that this is really no different than what anyone has to face being in a human body here on earth.  None of us know what tomorrow will bring.  Most of us have had difficult times in the past. Most of us are dealing with daily challenges of some sort.

Chronic illness is a unique challenge of course.  And I expect there are both similarities and differences in how all those going through it handle it emotionally.  For me, to get through and not go absolutely cuckoo bananas, I constantly bring my mind back to positives.  To gratitude for what I DO have.  Versus being non-stop upset about the losses.  The losses are constant of course.  From not being able to travel to an important family event, to losing your temper with your kids, gaining control, and losing it again within a span of 3 minutes. Over and over and over.  Thank you lyme rage!

I can't compare myself or my life with anyone else if I want to stay in a good place emotionally - who I used to be, what I want to be, how my friends or neighbours are, how my family is.  It is too hard and makes me feel bad.  So I stay as much as I can in the now and in gratitude.

Today, gratitude includes that my fingers are mostly cooperating to type.  Gratitude that I can share these thoughts in hope that they may ease someone else's journey - just knowing we're not alone - there are others out there going through hard stuff.  Impossible to comprehend hard stuff.  Gratitude that while I can't take my children out to do something today (it's a school PD day), that I can at least sit here in the house with them.  Gratitude they have a mom.  Gratitude for looking out the window at the vibrant colours of the grass, trees and plants in my yard. 

The little stuff that is really the huge stuff.

This is my life right now.  And it's amazing when I choose to let go of the fear and focus directly on the wonder and sheer fun of it. So a lot of the time I do. 

Okay not knowing

Turns out it wasn't the NT Factor causing my trouble. Too simple, perhaps?

After deciding late last night to go off this supplement again, I find myself lying in bed once more, 24 hrs later, with yet another pitch red, burning hot face and a headache/gross feeling to match. My throat burns when I swallow. And I have absolutely zero idea as to why.

I've had this happen in the past. A lot. My memory isn't great, but I seem to recall the burning up, fevered face look as a daily occurrence at least for the full first year of treatment. I got used to it. You have to get used to all the crazy symptoms, pretend that they are just normal in their own special way, and get on with whatever you are doing. Which of course is probably mostly just lying in bed trying hard to get through and survive this insane and horrid experience.

But it's just an experience. It too will pass. Someday.

I hope and keep the faith that it really will. And if it doesn't, maybe I can manage that too. I have somehow managed this far.

So I don't know why this is happening again now. And I don't need to. I have come to the point where I am okay with not knowing all the answers. If I happen upon a good guess I will follow through and see what happens. But I no longer go crazy with not knowing. I lie down when my body asks me to rest. And get up again either when I must, or when my body lets me know it is time.

I am so grateful to be in a place, finally, finally, finally, where I am usually okay with not knowing. Peace.

Pillows, big stacks of them

I'm thrilled to say I'm still in a good stretch. Days in a row where I feel as close to normal as I am ever able to, well, for the past several years. Yet strangely, the last couple of nights, my face has been turning sunburnt-red around 8 pm or so. I haven't changed anything in my routine, my supplements, my meds... What is going on???

Typical lyme... Sometimes I can guess why odd symptoms show up, other times I'm pretty darn near 100% sure why, and yet there are too many days where I don't have even the tiniest of clues. Oh well.

I'm loving the big pile of pillows on my bed through this. Supporting my burning head and pitch red face... The weary, inflamed body. Do you ever wonder what must be going on to the tissues inside when your skin is burning up on the outside too? Yikes. I haven't tried to look but I can feel the skin on my back radiating heat like hot summer pavement too.

I won't take a pic of my face. (The mirror is even too much!). But here is the stack of glorious pillows. :)

...
Ah ha! After writing all of this (which of course isn't much, but I'm on an iPad in bed and have not mastered typing on it with any efficiency so it feels like a tonne!), I realize I HAVE added a new supplement. I started taking NT Factor again yesterday. Ooooo, coincides with the change in symptoms too! I was on it before - months ago - and didn't notice any physical change. And it's pricey, so I stopped taking it. But suddenly felt an inkling to try again. (My latest strategy in regards to meds, supplements, therapies, etc. is not to stress but to simply go with my gut while listening as best I can to my body). The promises of NT Factor are incredible - fatigue reduction, energy increases, cells working up to 45% better - check it out here. I have heard of other lyme patients it has helped, and my doctor claimed it's great for chronic fatigue. There are a few bottles left in my cupboard so I thought it was worth another shot.

I don't really want to stop it again.... But am seriously wondering about the intense hot red skin I've got going on. I guess I'll give myself until morning to decide. Back to the pillows....