The Song In My Bones (Dealing With Pain)

There is a Wisdom,
Buried deep in my bones,
A Gift,
Passed down to me,
From Ancestors of Old.

Today we call it a curse,
And fight and rail,
We give it names,
Arthritis and Migraine,
And call the wild Wisdom,
By another name: Pain.

But, is it, really,
Just the song my bones knows?

5,000 years ago…

…I would have been honored amongst my Tribe. I would have warned my People four hours ago that a change in the weather was coming, something I knew because I felt the change coming in my ears, my head. We would have had time to take shelter before the raging winds arrived, as they have now.

…I would be warning my Tribe now that an even bigger change was coming. I feel it, in my bones – in the bad knee and shoulder that suddenly twinge, and the deep ache in my bones growing sharper by the moment.

My bones know. They are singing to me, singing of the changes to come.

Tomorrow, the temperature here will drop from 35 degrees to something-below-zero, with wind chills of -30 degrees.

My bones are telling me that, a Gift that could have meant the life or death of my Tribe.

I can tell you when rain is within 50 miles and headed this way, whatever the season, by the pang in my shoulder. There was a time when that would have been very useful.

Now, I have no need of this life-saving Gift. Who does? We have the Weather Channel, and weather apps on our fones.

But maybe, it’s time I stopped complaining about the “pain” of my “reactive inflammatory arthritis” and “weather migraines,” and started thanking my body for giving me the warnings it was meant to give me.

It is only my body singing to me with ancient Wisdom.

Maybe, it’s time I started just listening, just being with the sensations, without labeling them as “pain,” and instead, think about what they would have meant a thousand, or five thousand, years ago.

Survival. Life. Or, death.

Maybe, it’s time I stopped running away, and just lay still, curled up, and listened to the Wisdom buried deep in my body.

I think it has a lot to say.

I wrote that last night, but then didn’t post it.
I was too busy, listening to my bones sing.

There is a craft to this, the listening, one I’m sure our ancient ancestors refined. Just as I know the approach of rain by my very reliable shoulder, what exactly was the singing in my ribs, my bad knee, then most of my bones, even into my hands, telling me last night? If I had no weather app on my fone, I would need to know.

Waking far too early this morning, writhing from the ache in my bones, with pressure in my head, I knew the temperature was soon to start its drop and more change was coming. I could hear the wind roaring outside. When I got up, I discovered that yesterday’s mild south winds, that had changed to west winds last night, were now hard and gusting even harder from the north.

My mind flashed back to reading about the “polar vortex” and coming “arctic plunge,” with temperatures so low that “if you are younger than 40 you likely won’t remember anything this cold.” I put that out of mind.

Why stay awake and thrash and fight the “pain,” when it is only my bones singing to me, with the ancient Wisdom, as the bodies of some have done for countless generations before me?

Instead, I thanked my wonderous body for the warning, and told it that I understood why my bones were singing, the Wisdom it was sharing with me.

Muscles relaxed instead of spasmed.
The song became a lullabye.
And then, I went peacefully back to sleep.

It will take time to break long-engrained habits – the tightening of muscles around the signals my body is sending, the labeling of those signals always as “pain,” fighting and avoiding them, causing my body to only send them out louder and stronger, more urgently. But, it’s a start.

I’ve wondered before if weather-related migraines were an evolutionary advantage – if a small proportion of members of a tribe had them, they would have been, I think.

But, I never tried to consciously work with my body, to acknowledge that its messages were received, other than to say, “yeah, that part hurts, I understand, you can shut up about it now.” The flare of inflammatory arthritis I’ve been having has given me a new incentive to work on how I deal with “pain,” and acknowledging it while in deep relaxation does help – to a point.

Maybe, only “to a point” because I wasn’t acknowledging the whole message.

Yes, my wise body, I hear the song in my bones now, and I understand. You’re right, a big change in the weather is coming, a dangerous one. Thank you for warning me. I am safe, warm, and protected – and listening.

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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…

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…