“Chronic. Fatigue. Syndrome. It’s An Illness.” – May 12: ME/CFS Awareness Day

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I went to my PCP (that’s Primary Care Provider for those who don’t know) last week for my monthly visit, and a new nurse takes me back to the room. It went something like this…

Her: “You’re here for a follow-up for…?”

Me: Chronic fatigue Syndrome.

Her: Oh, fatigue. So you’re tired a lot.
(As she starts looking for the computer’s questionnaire for “fatigue” patients…)

Me: No. Chronic. Fatigue. Syndrome. It’s an illness, and it’s in there.

She continues sorting through, finally finds it, where I helpfully point out it’s listed as just “Chronic Fatigue,” but reassure her it has the right questions. The screen is huge, and I’ve done this so very many times…

She begins reading through the questionnaire the computer provides:

Her: And when did this start?

Me: 1999
(by now I know she’s NOT in the right place, she’s doing a new patient questionnaire, not a follow-up…)(sigh)

Her: And what brought this on: stress, viral infection, accident, yada yada yada…

Me: (hard stare)
Me: (thinking: do I really want or need to get into this with this ignorant nurse who couldn’t care less? I have a blazing migraine and ear infection and just want to see my most excellent doctor. I am not in the mood to patiently educate yet another nurse today.)
Me: Possibly a lot of things, but even scientists don’t know for sure what causes it.

Her: (she looks up briefly, startled)
Her: Oh… Is it relapsing, constant, or getting worse?

Me: Constantly getting worse.

Her: Are your symptoms worse after physical activity?

Me: Oh, are they ever.

Her: And do you have: unrefreshing sleep… impaired cognitive ability… decrease in activity level that interferes with normal activities… migraines or other headaches… muscle pain… weakness… gastrointestinal pain or bloating… etc etc etc

She glances over and sees me nodding my head, yes, to everything.

Her voice has gotten softer and lower as she’s moved down the list, and she trails off before she gets to the end. She wound up not asking me all the questions, and I should know, having done this once a month for years.

Me: I can make it easy for you. I have every single one of the dozens of symptoms on the list, with exception of diarrhea.

She looks at me with surprise.

Me: Next section: Yes, medications help, to some extent, but not enough.
Me: Yes, they cause lots of side effects, such as nausea, heartburn, headaches, etc. I take meds to deal with the side effects of my meds, but no, it’s not nearly enough. I’ve been housebound since 2007.

Me: Next section: yes, I’ve tried supplements and they do help, as does meditation, massage, and physical therapy. Acupuncture was questionable.

She is busy clicking boxes.

I really couldn’t tell, when she left, if she was upset at the thought of an illness that she’d never heard of causing such issues for such a long time, if she was overwhelmed, or just didn’t care. She didn’t look up when she stammered, “I hope you get to feeling better soon.” But as I reflect back on it, her shoulders were hunched, and she kinda looked like a dog who has been beaten… or maybe like someone about to cry. I honestly don’t know. I wasn’t mean or snippy, I was just matter-of-fact.

This is what it is.

I rested my blazing head down on the edge of the table, closed my eyes against the too-bright lights, and practiced my deep breathing while I waited for my doctor to come in. I couldn’t wait to get back home, away from the lights, the ordinary sounds of life, that brought such searing pain to my oversensitive brain, back into my girl cave and the dark and quiet… one breath, one moment, at a time… but how I longed to set foot in a store, or just ride in the car without sunglasses and a scarf over my eyes…

But, This is what it is.

And what it is, is known as Chronic Fatigue Syndrome in the U.S., although in other countries – and by the WHO – what I have is ME: Myalgic Encephalomylitis.
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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

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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!