health – Page 22 – One Woman's Quest

ME/CFS: Just Need Clarity

The desire to re-engage with life is so potent that when any window of wellness pops up I grasp it and, like a naughty school child, ignore all well-intended warnings of caution. It happened yesterday. After two weeks of slumping, I felt almost normal.

“Aha!” I said to myself. “I have energy!” Before sensibility could get a hold of me, I bundled up the laundry that had been amassing unsorted in the bottom of the closet, and whisked it all downstairs into the laundry room, where more piles awaited. (I know, this is preposterously bad behaviour, but believe me, laundry has that power over me.)

The plan – hastily devised – was to wait out the washing cycles downstairs. Armed with an iPad, I thought the lazyboy would be a perfect place to set myself up in between loads. “Seven minutes”, I told myself as I folded the stuff in the dryer, then: “Maybe I should have done this sitting down.” I chose to be optimistic. “Oh well, I am feeling better today, I can afford a bit more time standing.”

The truth about this disease (ME/CFS) is that while the mind and intentions may play tricks, the body is absolutely clear about its limitations. The tremors began as I stood folding. I ignored them.

With a new load underway, I collapsed on the lazyboy and scooped up my iPad. “Distraction is what I need!” I tried to convince myself, turning it on.

The headache started next. “Must be the lights. I’ll turn them off next time I’m up.”

By the time the laundry was ready to turn over, my body was very clear: Enough already! I am shutting down.

“But I haven’t had this much energy in weeks; just let me do a little more,” I begged, while continuing to shuffle the loads. I returned to the lazyboy, lights now off, and thought I’d try a bit of television – nothing too heavy.

I watched with my hand over my head, trying to hold back the pain. I waited till the laundry finished.

“What are you doing?” Ric caught me red-handed. “I can do this!”

“I’m alright,” I lied. “Just finishing up. That’s it for the day.”

He grabbed the basket out of my hands and carried it up the stairs, clearly not believing me.

Truth is, I was not okay. I had over-extended myself. Again.

Why is it so hard, when my body speaks with such clarity, to honour its messages?

“Why do you have to make this so difficult for yourself?” Ric asked echoing my thoughts.

“I just want to feel like I’ve contributed something; like I am useful.”

That’s it really, isn’t it? I used to know who I was, or I thought I did. I had a sense of being a part of something greater than me; I had something to add. Now, I am totally dependent on the kindness of others, with little to offer in return.

Who are we when all has been stripped away? What are we left with that defines us beyond being the blob in the bed? I guess this journey will, in time, reveal the answer.

This is the clarity I seek.

Adjusting to Life with ME/CFS

(Originally published October, 2014)

The news from the doctor was not so good today, or maybe it is that this news was no different from past visits, but my mind can only absorb the hard stuff in stages.

“I seem to be getting worse, not better.” I told her.

“That’s how it is often how it is with this disease,” she consoled. “Sometimes you have to hit bottom before you start climbing back up.”

I read my growing list of concerns: sleep remains a problem; eating is often accompanied by pain and abdominal swelling; I have painful swelling in my groin; breathing continues to be difficult; and my legs are unreliable. Headaches, heart palpitations, sweating when upright, dizziness and flu-like symptoms. I shake if I try to do anything standing, such as chopping vegetables. I feel like I’m not getting anywhere.

She nods with each item, recording it in her files, and occasionally asking for clarification. “All typical symptoms,” she attempts to reassure me. “Set a timer for standing: try seven minutes.”

“Barely time to prep food,” I mutter.

“Buy food already prepared,” she suggests. “And make sure you are sitting with your feet up for meals.”

“Not the table?” Eating at the table with my husband was the one bit of normalcy I was trying to hold onto.

“Do you have a lazy boy? Try using it for meals.” I do not have a lazy boy upstairs. I will have to eat in bed.

“Set a timer for phone conversations and visits; they are also exhausting.” I have noticed.

I have been tracking my daily activities, symptoms, and energy levels. She scans my past four weeks: nothing but chaos when I examine it.

“I see T.V. quite a bit.” she shakes her head. “T.V. is too draining. Limit it to one hour per day. Preferably commercial-free. I’d rather see you writing than spending time on T.V.”

“It is a lot of noise,” I agree.

In answer to my unasked question, she continues:

“Lying flat with your eyes closed is the best. Listening to soft music is okay, and maybe books on tape if reading is difficult. I also think it is time you consider using a walker. Definitely a wheelchair when you go out anywhere.”

“Will I get better?”

“In a year you might see a return of energy, but not likely more than twenty-five per cent – hardly enough to consider working. It takes time.”

The crushing in my chest when I leave is emotional. You will have to grieve the life you have lost, I remember my therapist saying. Today, I understand her warning.

Home again, I crawl into bed and try to breath through the heaviness that bears down on me. Sobs release some of the oppressiveness, but I know it will linger for a while.

Healing is a shift in perspective, I always used to say. Where is the new perspective here?

Well, I tell myself, Look at the bright side: I won’t have to worry about wearing make up for a while, so my skin will get a break. And I’ll have time to let my grey grow in without anyone noticing. Think of the money I’ll save on clothes.

My twisted sense of humour always comes out at the worst of times.

If talking tires me, then maybe I’m going to learn to be a good listener. That can’t hurt, right?

And wait! Didn’t she say she would actually prefer it if I wrote instead of watching television! You mean, maybe for the first time in my life, writing can become a routine and not an ocassional self-indulgence?

Could it be that in the very moment I lose my legs, I gain wings?!

Ah, life!

Harmonics

6:30 a.m. alarm sounds.
“Time to wake up!” conditioned Compliance commands.
“Just a little longer,” Sensibility suggests.
Guilt, like an incessantly annoying child
tugs on Conscience:
“Come on, there’s lots to do!”
Body does not respond.

Sleep wins
and dreams come:
homeless,
relying on friends,
no food,
backed up toilet,
children’s wide eyes fearfully imploring
When is this all going to end?
Guilt propels a return to consciousness.

8:25 a.m.
“Up and at ’em! There’s a good soldier!” Compliance attempts to be chipper.
“There’s really nothing more important than rest,” Sensibility suggests.
“Can’t lie in bed all day!” Guilt counters.
But body is MIA.

Dreams surface again:
Setting up house in a thoroughfare,
people coming and going, oblivious to intrusion,
co-workers indifferent,
eyes scolding; convicting.
Guilt mutates to rage,
Body wakes up with a choking cough, and gasping,
reaches for the rescue inhaler
and sucks in, desperate for air.

11:11 am.
“That’s it! Up you get!”
“No! No! Rest is needed!”
“The day is wasted! There’s no getting it back!’

“SILENCE!” A new voice emerges.

A collective intake of breath.

“Breathe,” comes the message. “Just breathe.”

A unified sigh.

“And breathe again.”

Tempers cool, and emotions begin to settle.

“What’s going on?” Guilt wonders.
“Just trying to stick to routine,” Compliance explains.
“It’s always been this way.”
“But she’s ill now,” Sensibility adds, “and there needs to be concessions.”

“Breathe,” the voice reasserts, and all sigh again.
“Just be in the stillness of the moment.”

Stillness has no voice.
Its language is compassion and infinite,
infinite wisdom.

“And surrender.”

Compliance sobs with the release of such enormous obligation.
Sensibility gratefully gives over the burden of responsibility,
and Guilt…..well Guilt is little,
and happily snuggles up to Unconditional Love.

“There, there,” Voice soothes, “isn’t harmony so much better?”

Body concurs and rises out of bed.

As a Tree

Confined for hours at a time to my bed, I cheer myself by contemplating the trees outside my windows. There is something in their stoic beauty that both calms and inspires me.

Be as the tree a former meditation instructor taught me.

If I were a tree
my roots would run deep into the earth
and spread in all directions
grounding me.

Present.

My trunk would be wide and solid
weathering all storms
supporting other life
a tower.

Strong.

My branches would reach up to the sky
and dance with the breezes
and bend with the changing seasons
and bow to Nature.

Flexible.

If I were a tree
I would be calm, yet strong;
have heightened awareness, yet be rooted in reality.

I would yield to change,
yet stand proud in my own existence,
growing with grace.

If I were a tree
I would live in harmony
with Nature.

Present, Strong. Flexible.

Fully alive.

(Image from: www.nbcdfw.com)

Whale Dreaming

I dream:

We are in an open row boat, crossing a river, when I see a dark shape in the water below. “That looks like a whale” I say. “But how can it be?” Yet as I watch the figure pass and emerge from the water, my suspicions are confirmed: it is a whale. It breaks free of the water and appears like a cartoon of a whale hovering over the river. “We are on the St Lawrence” Ric offers, and I understand, but how did we get here?

Back home, my cousin drops by. “I have rented a cottage in PEI, and I’m looking for someone to join me,” she says. “I’ll put the word out,” I respond before realizing that I could join her. Why not? “I was hoping for that,” she smiles. We make our plans – whether to go by car or fly. I am excited. “You can see whales from the shore,” I exclaim.

Well, whales are different from snakes, and hopefully, an improvement. We have been whale-watching twice, and both times it has been incredible, and awe-inspiring. Whales are gentle creatures, despite their size. To be close to a whale is to marvel at the power and grace of Nature.

So why whales?

Dreams bring us symbols and metaphors that speak to what lies below our conscious, ego, selves. For the past seven months, my husband has been battling cancer as well as trying to heal from two accidents, and now four surgeries. Up until a few weeks ago, we have both attempted to keep up with the normal pace of life, but the pressure has broken me, and I have succumbed to the stress. I am exhausted by the emotional and psychological strain, physically incapable of keeping up.

It is as if we are crossing a wide river in an open row boat – crossing a wide, unknown river, with little protection from the elements – yes, that is how it feels. We keep going even though we feel inadequate and we aren’t quite sure we know where this is leading us.

It is as if a large creature lurks in the water below us. That large creature could be cancer, loss of life, or healing and renewal. We have no way of knowing right now. In the dream, it looks like a whale, but it ends up being a cartoon caricature of a whale. Does that mean that my imagination has got the better of me, or that what appears to be so overwhelming will, in the end, seem trivial?

It is as if I have an opportunity to travel to P.E.I. with my cousin. The cousin in my dream was one I looked up to and admired. She suffered ill health for much of her life, but maintained an attitude of quiet acceptance until her death at the age of 53. To have the chance to spend some time with her would give me new perspective and understanding. P.E.I is not a place I have ever visited, but have been interested in. It exemplifies simplicity and rural peacefulness, although my brother says it is too commercial. He thwarted my one attempt to visit P.E.I. by rerouting me to Grand Manan, an island in the Bay of Fundy. I definitely watched whales off the coast of this tiny island, and they accompanied our ferry ride to and fro. It was the highlight of my trip.

So how does this dream apply to my life right now? In the dream, I seem to lack clarity, not picking up on the signals and opportunities. I am not aware of where I am, and question what I see, and when opportunity does come my way, I am slow on the uptake.

I do feel confused, and lacking clarity right now. I worry that I am not taking the right course of action, and that I might be missing out on important opportunities. While my husband seems to know where we are, I do not have my bearings.

In the dream, I am hoping to see whales. How is this a metaphor for my life? I want to experience the numinous – I want to feel the presence of something larger than life, something so magnificent that it will make me stop in awe and believe again.

I need a sign or an omen that will waken me from this nightmare of survival and remind me once again, that while this is one ‘whale of a tale’ that we are living, it only a moment in the greater scheme of things. I need to be reminded of the miracle of Nature.

I need to remove myself from the constant churning of fear and anxiety and retreat to a place where time stands still and simplicity is the norm. I need to slow down and let my heart calm.

(Image: sam1311415102.blogspot.com)

Dragon Energy

Referred by her priest, a young woman made an appointment to see me.

“It’s urgent!”

She arrived the next day, and I could see by her movements that she was in distress. No more than thirty, the woman looked tired, and something else – afraid?

In keeping with my preferred practice, I had requested that she not reveal any details of her situation to me in advance. I prefer to start with a clean slate, no expectations or assumptions to confuse me.

I asked her if she had ever had energy work done before. She had not.

“I’ll explain as I go along,” I suggested. “First, make yourself comfortable.”

She chose to lay face down on the treatment table, and I began my preliminary assessment. There was clearly a barrier of some sort in the field. If you meet with resistance, it is usually yours, Delores Krieger’s words echoed in my mind. I started again, this time moving my hands further from the surface of her body. No change. Maybe I am too forceful, I thought. Intentionally, I focused on being whisper gentle. The energy bounced back at me.

“I’m sorry,” I said. “But this does not seem to be working. Are you open to trying a different approach?” I had just studied third degree Reiki, and while my experiences with it were limited, I didn’t know what else to do.

I moved her to a chair, and explained that whatever was happening was between herself and whatever she deemed God to be. “The process which I am about to do, will help you make that connection, so that you can ask for what you need. Are you okay with this?”

She nodded ‘yes’ and I instructed her further as to how we would proceed. I invited her to close her eyes and breathe deeply as she concentrated on what she needed. Then I began.

The ritual doesn’t take longer than fifteen minutes, and when I indicated that we were finished, she opened her eyes clearly revealing that she wasn’t convinced.

I didn’t know what else to say.

Two weeks later, she called again. “That thing that you did, how often can you do it? Is it too soon to have another?”

When she arrived this time, she was animated, almost excited. With no preliminaries needed, we moved right into the treatment. This time she had tears in her eyes at the end.

“I felt it!” she said quietly. She asked to come back in two weeks.

“I can feel it wearing off days before I come,” she told me on her next arrival.

“How does it feel?” I was curious. This was fairly new to me too.

“It’s hard to describe, but I somehow feel more vital, alive, and then I feel myself becoming tired again just before I’m due to come back.”

Then she really caught my attention.

“I was supposed to be dead by now.”

The woman explained that she had been diagnosed with a rare terminal ailment, and given two weeks to live. A single mother and business owner, she wasn’t ready to give up, so she visited her priest, who then referred her to me as a last resort.

“The treatment for my disorder takes a month to work, and I was too far gone, so I needed a miracle.”

Reiki employs symbols that access different forces, one of which is the dragon. I have never really been able to define what this energy is other than to note that is often connected to breakthroughs.

Last time I saw her, my client continues to run her business and enjoys watching her own daughter blossom into a young lady.

Wake Up Call

Cancer, it turns out, it is a powerful proponent of simplicity.

Faced with uncertainty, one is forced to exam the complexities of life and cull.

Our lives are reduced to three priorities:

– Making healthy choices

– Caring for relationships

– Reducing financial burden.

Necessity demands that any extraneous commotion be pushed aside.

Meditating

“There are several steps to this meditation,” Dora Kunz began, “and with each one, if you hit an obstacle, just set it aside.”

I had come, as had those around me, to learn more from this enlightened soul. Having experienced the sense of renewal that meditation could bring, I was excited to be learning from such an expert. Dora Kunz, co-founder of Therapeutic Touch, had practiced meditation from the age of five, she’d told us. Now in her nineties, she had endless wisdom to impart.

“Take a deep breath in,” she started, “and as you exhale, release any tension in your body.”

I breathed in, noticing that the area between my shoulder blades was knotted in tension. I tried to envision it breaking up with my breath, but it wouldn’t let go.

“If your tension won’t release, just acknowledge it and set it aside.”

I could do that.

“Now, without speaking, affirm to yourself: I am at peace with myself; and allow yourself to feel it.”

Breathe in. I am at peace with myself. Breathe out. A niggling in the pit of stomach said, No you’re not. I knew it wasn’t true. I was not at peace with myself.

“If you feel doubts, set them aside. If you are unable to do that, than act as if you are at peace with yourself.”

It is as if I am at peace with myself. Ah, that felt better. I could imagine as if.

“Now allow yourself to become aware of the person on either side of you, and beyond them to the circle gathered here, and affirm: I am in harmony with those gathered here.”

This was easier to do. We’d come together with a common goal. I inhaled the warmth of our kinship, and felt myself relax a little deeper.

“Continuing to breath deeply, allow your awareness to expand beyond these walls and connect with the nature that surrounds us. State: I am at one with Nature.”

The meditation room was surrounded by nature on all sides. Following her instructions, I imagined myself breathing in the fresh country air, the vivid green of the trees vibrating around me, and the trickling sound of the brook flowing through me. I am at one with Nature, I repeated to myself. With each breath, I felt as if my body and my heart pulsed with the rhythm of nature; everything interconnected. I was now deeply relaxed, surrendering.

“Now pull your awareness back into your own center.”

Focusing on my center, I drew my breath in, the sensation of relaxation filling my belly with a calm strength.

“From this center of calm and strong, connect beyond this room, beyond nature and the world, beyond the galaxy, to a universe of order and compassion.”

Slowly, she spoke her command, and my awareness obliged, expanding and reaching beyond the beyond, feeling that connection, as if a silver cord of consciousness tied me to an eternal, omnipotent intelligence. I connected with order and compassion; and the presence of unconditional love, and in that moment knew that all was as it was supposed to be: life has reason, and purpose, and meaning. I wanted to remain suspended in this realm of knowing: free.

“Now bring your awareness back to your center, maintaining the essence of your experience.”

I felt stronger, somehow, and very calm.

“When you are ready, let your breath bring you back into this room, to the awareness of your body in the chair. Gently move your fingers and toes, allowing yourself to return to full consciousness, renewed and restored, and at your own pace, opening your eyes.”

Reluctantly, I became aware of the room around me, and ever so slightly moved my fingers. With a yawn, I let my body wake up, breathing life back into it and stretching. I felt so good, so alive!

A universe of order and compassion, I thought to myself. What a wonderful idea! If only I could remember it in my day-to-day living.

“Exactly Right”

Thor and I have a favourite game: fantasizing about what we’ll do when we win the Lottery. We like to play it Friday nights, before the draw. “What’s the first thing we’ll do when we win?” Thor will ask. We’ve spent countless hours indulging this dream.

Recently, we won a different lottery: Thor has been diagnosed with Stage III cancer. I can safely say we have not speculated about this possibility, and now that it has happened, we no longer have the luxury of speculating about what ifs.

Some say that everything that happens in life is exactly as it should be. I have sat with this idea for weeks now, unable to respond. What could possibly be “exactly right” about cancer?

Coming to terms with the diagnosis and choosing a treatment path has caused many sleepless nights and a whole gamut of unexpected fears. The delusion of a lottery win has been replaced by the cold hard reality of our life situation. ‘Someday’ is now ‘today’ as we find ourselves forced to make tough decisions and clean up our lives. Finances, health, and unresolved issues have a new immediacy.

“Your quality of life will change,” the doctors warned. Even though we haven’t started treatments, it already has. We will be downsizing our living space shortly, and the trip we planned for the upcoming holiday season has been cancelled. We have rid our cupboards of unhealthy foods, and plan to make self-care a priority. The physical trials that Thor will endure are yet to be seen.

Through all of this, one thing has remained constant: our love. Family and friends, who have always mattered, become even more precious.

Now that we have made decisions, and taken actions to support a healthy life, we are both feeling calmer. Is what is happening exactly right? Ask us ten years from now.

As for now, “Don’t be so sure we didn’t win the Lottery,” Thor tells me. “If we didn’t find the cancer, we’d be telling a different story.”

A Diagnosis

My intention in starting this blog was to chronicle my journey through cancer, however; after a lumpectomy and a brief recovery time, the threat was gone. Nothing to write about, really. I kept going anyway.

Yesterday, life as I knew it took an unexpected twist. Thor was diagnosed with cancer.

“High risk,” the doctor informed us. “Your only options are surgery or radiation, but we’ll want to do more tests first to ensure the cancer is contained.”

I felt the room spin. My eyes were fixed on the doctor, hopeful that he would add something else, anything, uplifting. Oh my God, I thought, my poor husband! What must he be feeling? Without shifting my focus, I reached for Thor. He needed to know that I was there for him, no matter what.

“I’m sorry, doctor, but I want to be clear.” I struggled to keep my composure, but the tears were already breaking through. “What do you think is the best option?”

We had arrived with a list of questions, which Thor now thrust at me. Prepared as he was, he couldn’t access them. I glanced at the paper, but nothing was making any sense.

“Well, I really can’t say,” the doctor hedged. “There will be side effects, of course.”

Together, we managed to breath through the consult, but I fell apart outside of the office. Thor remained stoic. Shh! he gestured towards another patient. How can he be so calm?

“I was expecting this,” he told me on the way out.

“I’m so sorry,” I blurted out. “You don’t deserve this. I mean, you are a good person…..”

There are no right words, and mine certainly sounded empty. Truth is, goodness has nothing to do with it. I knew that. I’d seen so many people suffer with cancer; sat with them through their pain and suffering, watched them die. And I’d witnessed others who’d battled and survived. None of them deserved the suffering.

“Even the blackest hole has silver somewhere,” Thor offered.

Damned if I can see it, but I sure hope he’s right.