In my last post, I said I wanted the fire, the passion, back in my life. Over the last few weeks, I’ve done a lot of deep thinking and reflecting, while struggling every day just to keep my ship from sinking.
Well, I’ve come to some harsh realizations and conclusions, and I’m feeling pretty damn passionate.
It has become quite clear to me that the time has come for a full scale war.
A take-no-prisoners, risk-it-all, war.
It is that desperate.
My body is that desperate.
Ravaged by years of chronic illness, my muscles have withered away to nothing.
Pillaged by viral invaders, my immune system doesn’t know which end is up.
Overwhelmed by colonizing microbes and leaky gut syndrome, my gut doesn’t know food from foe.
Every resource in my body has been drained, thrown into the war effort against ME/CFS for long year after long year after long year… I was diagnosed in 1999, but sick well before that.
Hasn’t there been full-scale war before now, you ask?
Yes. At times.
But also times of resignation; of trying just to hang on, hopeless of ever improving, just patiently awaiting the seemingly inevitable. The slow, slow, spiraling downward, so slow as to not provoke a passionate response. Too tired to hope, sick of changing my meds, or trialing this alternative therapy or that.
You could call it “patient burnout,” and I suspect many of my fellow patients know just what I’m talking about. The year after year of trying to hit on a combination that would stop the downward slide without success, until you just stop really giving it your all.
But the last few months, the slide hasn’t been slow. It’s been alarmingly fast.
Now I have this looming sense of being back-against-the-wall, it’s-now-or-never. Live – really live – or die.
Because I know my body simply can’t go on like this.
It can’t sustain the fight much longer the way it has been this Summer: the periodic adrenal crises and crashes; the repeated episodes of diarrhea; the weakness and shakiness; and continued loss of muscle mass. I have only to look in the mirror, or to look at the deepening indentations in my hands, feet, or wrists, to look at the starkly showing breastbone, collarbone, and ribs, the sagging skin, to know that this is simply unsustainable.
I’m not being overly dramatic.
I’m being realistic.
And it’s not sustainable – or fair – for my youngest daughter, Rhiannon, either.
My elder daughter, Terra, is 29. She has worked hard and built a life for herself, with a career she loves in the military, and graduated magna cum laude from college while working full-time. I’m couldn’t be more proud of Terra and her many accomplishments. I’m also relieved that she has established such a rewarding and fulfilling life for herself, and that she is an extremely strong and independent woman.
Whatever happens to me, Terra will be okay.
But Rhiannon has been carrying the weight of being my primary caregiver for 7 years. She is only 18 1/2 years old. Rhiannon has mild ME/CFS herself, but more urgently, her life is on hold right now. Because of me. Because I am so incompacitated, and as I have gotten even more so over the last few months, her burden has gotten even heavier.
And that is simply unacceptable.
It breaks my heart, every damn day.
Rhiannon deserves a life, too, one where she can go and do things without worrying I am going to literally die while she is gone. Without worrying that I am going to die before she has gone to college, gotten married, and established a life for herself. Without worrying that she is about to become an orphan – her father died just over a year ago. And without the stress of my illness making her even more ill.
And you know, I would really like to have some years of life back that aren’t being lived out of bed.
I want to garden again. Walk in the woods. See my grandchildren be born – and they are not planned for a number of years yet.
Rhiannon promised me a trip to Chincoteague & Assateague Islands, to see the wild ponies, something of very special signifigance to me. We were supposed to go this Summer, to celebrate my 50th birthday.
But I haven’t left the house for the last 3 months except to go to the doctor.
Issues like these, they help bring the Fire back into your heart.
So what’s there to do that hasn’t been done in the past?
REFUSING to surrender to the Living Death is a start. Attitude is important!
Get this, ME/CFS! I’m not done living my life yet! I’ve got things to do, people who need me, and I’m not just going to go quietly into the dark!
Every War Needs a Good Stretegy
Strategy is vitally important, and at this late stage in The War, that means pulling out all the stops, and a lot of thinking outside the box.
It means research, reviewing all my labs, running my clinical history over again, and connecting all the dots.
If the majority of rx meds have failed to do much to make a difference, this is where I look elsewhere for answers – and for weapons to add to my arsenal.
In May, I found one big clue, one big fat juicy hint at the Enemy’s original weapon, the one that caterpaulted me into this mess, a toxin we’ve all been exposed to. Knowing that, I know how to undermine it, and begin to repair the damage.
If the invading hordes of viruses and microbes are resistant to the meds I’ve taken for years, then I hit them with something new and unexpected – this is guerrilla warfare, and the weapons I need come from the land, from the Earth, the trees and plants: Herbal Anti-Virals & Anti-Fungals.
Heal the gut and my body can absorb nutrients again. Just as importantly, my immune function can be restored to proper functioning. Since my own army of beneficial bacteria has been annihilated, I’ve recruited new ones – with something far beyond yogurt or standard probiotics, and have already had a “healing crisis,” showing that my immune system will respond.
When reviewing my labs, I was reminded I have both MTHFR mutations – and the full ramifications of those are something I’m just beginning to understand, but they sure are one big piece of the puzzle (and one many of us have in common).
There is a LOT that needs healing, a lot of systems in disarray, and if I’m neither eating correctly because of PAWS or digesting correctly because of malabsorption and leaky gut, then there are a lot of things that need to be supplemented. I’ve been researching into those, with my doctors’ help.
I’ve already found one supplement that has helped tremendously with cognitive issues, much to my shock and surprise – I wouldn’t have been able to write this post without it, and highly recommend it (I need to take it early in the day or it keeps me awake): SERIPHOS.
This is sink-or-swim.
I either figure out exactly what my body needs, thru careful research and with my doctors’ guidance, and get it and take it, or The Enemy is going to chalk up another victory.
And that’s just not acceptable.
I will not go quietly.
I want my Life back!