“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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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!

2 Hours With ME, and Dysautonomia: May 12th, International ME/CFS Awareness Day

I called Rhiannon, a touch of panic in my tone of voice.

I have screwed up. She made me a power smoothie before she left for shopping, and I drank it too fast.

“I didn’t even drink the whole thing, only half!” I explained.

Now, the icy drink sits in my stomach, and its chill spreads throughout my body. I have gone from warm to cold to shivering to teeth chattering to shaking all over.

It is 70 degrees outside. Two hours ago I was sitting out in the warm sun, lightly dressed. Now, I have my winter coat and fuzzy boots on, and I have hypothermia.

Most people don’t know that many of us with ME/CFS suffer from some form of dysautonomias. These are malfunctions of our autonomic nervous system – things that our bodies should handle automatically. These can affect many parts of our body. For some it affects how our body regulates – or fails to regulate – our body temperature.

Some of us also have muscle wasting or atrophy.

I have lost too much weight; most of my muscle mass, and I am struggling not to lose any more. At a hundred ten pounds, I cannot afford to.

And I cannot afford to be in hypothermia.

The shivering and shaking of my muscles is using up the valuable nutrients and energy of the high protein, RX, smoothie I just took in. I need every calorie I can consume, and every ounce of energy that I can hold on to.

Besides which, hypothermia is not a good condition for my struggling body, nor very pleasant.

I tell Rhiannon I have to get in the shower. This is beyond what a heating pad will fix.

I don’t like to shower when no one else is home. My blood pressure tanks regularly (and by “tanks” I mean 82/47, for instance). It would not do to pass out in the tub. But it’s the only thing I know to do.

Dysautonomia can also affect our blood pressure and even the amount of blood in our body – our blood volume – making both too low. This results in conditions such as Neurally Mediated Hypotension (NMH), POTS (Postural Orthostatic Tachycardia Syndrome) or OI (Orthostatic Intolerance).

During a NMH episode, the blood pressure can drop very low, often very fast, and fainting can occur. Usually, at the same time, the pulse rate goes up, putting the heart into tachycardia. There are a several different medications for NMH, POTS, and other blood pressure related dysautonomias, but they can come with some very nasty side effects.

Climbing in, I seal the shower curtain, anxious to keep every bit of warmth inside. I sit on my shower stool. I hate it, but it is necessary. I’m too weak and in too much pain to take a shower standing up.

Many of us go days or sometimes even weeks without a shower. Taking a shower or bath uses up an incredible amount of energy. Some of us cannot bathe ourselves at all anymore.

My skin is cold to the touch, cold and clammy like that of a corpse. I huddle over my legs as the hot, hot, water runs over my body.

It seems to take forever before I stop shaking enough that I can slowly wash my hair. It was certainly in need of a wash.

After 37 minutes, the hot water is running out. I’m still not sure I’m warmed up enough. I have no choice but to get out.

The skin on my thighs, on my butt, and arms, is still cool to the touch, but not as cold as it was.

One aspect of having NMH is having very poor circulation to the limbs and skin.

Emerging from the shower, I wrap tightly in a thick towel. I sit on the stool, with my head in my hands for 10 long minutes. The blood pounds in my head, and I am breathing hard.

I am dizzy and exhausted, drained and in pain. but I think I am starting to be warm again.

Too tired to move, I reach for my fone, and dictate this post, still wrapped in my towel, still sitting on the shower stool, head resting wearily on folded arms.

Now the question is, am I too warm? I listen intently to the signals coming from my body.

It has forgotten how to regulate itself. Up and down it goes: fevers, chills, sweats,  night sweats that go on all night long…

Like so many, I can’t go out on summer days when it’s over 80 because I overheat and get a fever far too fast. Getting in a car that has sat in the Sun can cause an instant fever – and an instant crash.

In winter I must bundle up extra warm against the cold.

And it seems that even when it’s 70, I must drink my protein smoothie either slowly, or on the heating pad. I felt hot when I started drinking it today.

Sure didn’t take much to change that.

These are the things that daily life with ME/CFS is made of…