15 Years: Time, Memory, Remembering, Forgetting, and Stupidity

It’s funny, what I forget, even now, after so long being sick. Sometimes, in my mind, I am still strong & healthy, as if time simply stopped passing when I became ill. Sometimes, it really feels that way, as if time did stop, and there is only The Before Times and a giant blur that came after.

But it’s been 15 years this month.

I had relapsing and remitting symptoms for a couple of years, and then in Dec, 1998, ME/CFS & FMS (and chronic Lyme) came to stay. I was diagnosed in 1999.

I just now, today, realized it was now actually the month of December, and the year is 2013, and that means it has been 15 years.

Time passes very differently for those of us with ME/CFS. I often am surprised at what month it is, or how long it’s been since something has happened. Sometimes I’m off by years when asked, “How long since…?”

One of the curses and also dubious blessings of this illness is memory loss. I remember things that happened before I became ill far, far, clearer than things that came after. Those 15 years are a fog, a ghostly mist through which I catch glimpses of events.

Sometimes, something or someone will trigger a memory, and something totally forgotten comes back. Sometimes, no matter how hard someone tries to get me to remember something, even some meaningful and important event, no matter how desperately I grasp for it, there is just nothing there. A ghostly mist where the memory should be. A blank slate.

But the not-remembering, the fog, and the complete lack of a sense of the passage of time, those things can be a blessing, too. If I had to really remember all the pain, misery, and suffering, of those 15 years, the frustrations, the losses… I’m not sure I could handle that. It is better that it is a blur.

Sometimes, because it seems like the last 15 years really didn’t happen, and I’m still that strong & healthy woman I was at 35, I forget, and do stupid things. Things my now-fragile body can’t handle.

Today, we are in something of a crisis as we are preparing for a severe ice storm, and I am totally stressed out. This stress is a huge problem.

My body’s been dumping adrenaline, making me think I am stronger and can do more than I am or should. It’s had this adrenaline dumping issue for months now and we haven’t been able to track down the cause.

Suffice it to say, whenever the slightest bit of stress happens, my body dumps adrenaline and prepares for “fight or flight.” This has led to a lot of pacing around the house like a caged tiger, sleepless nights, angry and irrational outbursts, a “manic & frantic” mental state, and is, in general, driving me and my very patient caregivers absolutely crazy.

Ice

The last 10 days have been incredibly stressful, with a severe ice storm last Tuesday & Wednesday leaving damage behind that I had to deal with, and now a second, probably even more severe, ice storm looming on Sunday.

I have pushed way far through the “energy envelope” we with ME/CFS are supposed to stay within, for day after day, goaded on by a flood of adrenaline.

And I’ve done a lot of really stupid things: walking around in the icy woods assessing damage, flagging down electric company workers…

I’ve been home alone for a week, as Rhiannon’s couple days’ visiting with Ben’s family turned into a week when she caught a terrible cold that I really don’t need to catch. So, I’ve been dealing with a lot of crap on my own that I normally wouldn’t – not just daily living, but getting power lines fixed, both at my house and a neighbor’s retreat cabin, being without cable for days and getting that fixed, etc.

Today’s really stupid thing?
When the electricians who are installing inside wiring for our emergency generator arrived, Kodi, our 125# Tibetan Mastiff/Rottweiler, went ballistic. He is head of security here, after all, and there were 3 people on the porch. His job is to protect me, and he takes that very seriously.

Kodi

2012 – He’s filled in considerably since…

The flood of adrenaline hit. I had to get him in the bathroom so I could insure their safety. I didn’t even think about it. I reached for his collar and he yanked himself away, rearing up like a wild horse. I lassoed him with a leash, and oh, he fought, just like the horses I used to have, before finally giving in.

Kodi understands something I still don’t, after 15 years sick, and 3 or so at this precariously low weight: He’s an incredibly powerfully built, 125 pounds of solid muscle, linebacker of a canine killing machine, and I am 107 pounds of skin, sinew and bone. I am not that physically strong woman anymore, who could wrangle a horse.

He is a dominant-aggressive dog by nature, and it took a long time and a lot of hard work to get him to submit to me as his pack leader. He still sometimes puts up a fight about that, especially when I’m in the frantic-manic mind-state that adrenaline puts me in, rather than the calm-assertive state I should be in.

It wasn’t until my adrenaline level dropped that I even realized my hand was hurting and damp. Leash burn, so bad it had blistered open and was oozing pus. And then pain in my fingers, my wrist, my back…

“What the hell was I thinking?” I asked myself, as I inspected my hand, noting yet again the hollows where muscles used to be. I wasn’t, I concluded.

Adrenaline fueled, my mind told me to take care of the problem.

Forgetting I wasn’t still that tough & strong woman who not only wrangled horses but also lived with wolves, I did.

Now I will pay the price. Hopefully, this time the lesson Kodi has taught me will stick, and I will approach him differently.

15 years I’ve been sick, and yet, still, there are times I don’t remember that.

And I don’t really know if that’s a good thing, or a bad thing.

But if ever I forget, and truly only see myself as this frail shell of the woman I once was, I think I would be done for. THAT woman has to live on in my mind, the ultimate goal, in order to keep going, keep looking for ways to get better. I will never be quite HER again… I will be older, wiser, and emotionally and mentally a hell of a lot tougher than I ever was. But SHE has to remain the goal, unforgotten.

I think that’s worth a little leash burn and sore muscles.

I Will NOT Go Quietly Into The Dark

image

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?

Plenty!

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!

Coping: One Breath, One Moment

A post about getting through those moments you ask yourself: “What fresh hell is this?”, or beg, “Not again, please!” and, “When Food Is The Enemy”

Recently, yesterday I guess it was, but it seems eons ago, I managed to poison myself.

Not in the typical, swallow something toxic way, of course.

No, not me.

My poison?

A bowl of oatmeal. A stupid bowl of gluten-free oatmeal. A big bowl of oatmeal.

I knew almost immediately that I had made a serious error, as it first sat in my stomach like a brick, and then, the bloating and the pain and the overall “oh, crap, what fresh hell is this?” feeling came over me.

Like many with ME/CFS and Fibromyalgia, I have Leaky Gut Syndrome, which in some patients is labeled as only IBS – (Irritable Bowel Syndrome). I’ve got both labels, but today’s topic is Leaky Gut.

What that means, in very general terms, is that my intestines are far more permeable than they should be. Particles from foods I eat can enter my blood stream, and my body becomes hyper-sensitive to them. The more frequently I eat something, the more common reactions become.

For a more expanded discussion of this, see this post:
The Problem, The Plan, via Dr Z

I have quite a large number of items on “The List” of things I simply can’t eat. Oatmeal used to be on The List, but after avoiding it for a number of months, and then trying it again, it seemed to be okay.

Until yesterday. When suddenly it was not okay, and I have been enduring the misery of severe bloating (as in, looking 6 to 8 months pregnant), belly cramping, nausea, migraines, and an overwhelming toxic feeling ever since.

It is hard to define what it is to feel “toxic,” but in general, like you’ve been poisoned. Very weak, difficulty thinking, palpitations, nausea/vomiting, extreme migraines, on & on.

Note: To the family members of ME/CFS patients, I would just like to add: this, this horrifying misery, is why we don’t get excited about going out to dinner (if we’re able), or trying new foods. The tiniest bit of an offending food can lead to misery that lasts days – long after you’ve gone home.

So, what’s to be done when you’ve poisoned yourself with food?

Not much. Take a hefty dose of magnesium, which acts as a laxative, to move it along as fast as possible.

As long as it’s in your body, it’s going to be setting off your symptoms. So you need it out of there – and fast!

But mostly, you have to wait it out.

If your doctor (likely an alternative practitioner or LLMD) has indoctrinated you into the Gerson Therapy (the infamous coffee enemas), they can certainly help both move things along, as well as detox your blood.

Substituting chamomile for coffee, as explained in The Gerson Therapy, helps to calm intestinal spasms. You can also mix coffee and chamomile. Experience tells me that a slightly overly warm brew will produce better, umm, results.

For info on my own experience with the Gerson Therapy, you can see all posts tagged “Gerson,” starting with The Problem, The Plan, via Dr Z.

Breath by Breath. Moment by moment.

I wrote this to my mother earlier tonight, after two days spent complaining of being too nauseated to eat, and how awful I feel:

“Can’t think of much else right now except get through this moment, this minute, this misery. Its a thing my very ill friend, S., and I say. Just focus on this moment. Don’t think about how long the misery will last. Just get thru this one moment at a time.

“It’s how we keep from becoming another ME/CFS suicide statistic. If you think, “it will never be any better than this,” or, “this is gonna last forever,” or “I’ll never be any better than this,” or, “what’s the point, this is just gonna happen again & again,” that is the path to becoming a statistic.

“So when our heads are pounding, are bellies are churning, the pain is just so much we want to crawl right out of our skins, we say to each other, “Just get thru this moment. This one breath. Don’t think about the moments to come. Just this one moment.”

“And that is all I can do right now.”

I am very happy to report:
After my second round of coffee & chamomile today, the offending oatmeal has been well & truly expelled. I feel better already, although it will take a few days to get back to “my normal.”

Always remember: You can get through it. One breath, one moment, at a time. Just take a big deep breath… and let it go. See the pain/misery/illness/despair flow out with it. And then just take one more big breath…