Chronic Illness Support

In my efforts to regain a baseline with MECFS, I’ve witnessed the ongoing carnage visited on the newcomers. Long Covid sufferers remain flummoxed by the landscape of medical neglect. Three decades into it myself, I’ve found it challenging to witness their outrage. I sporadically visit Twitter now for that very reason. I’m at once upset for their plight and gobsmacked by the shock they’re already experiencing over the length of time they’ve been suffering. “It’s been 18 months now! And no help!” I genuinely get it and care and feel those feelings right alongside a sort of astonishment tinged with frustration. Deep frustration. 30 years here. And there are folks who’ve been at it longer than I have.

It’s easy to forget that people actually still look up to certain medical and science institutions. They’re experiencing the long journey of alienation and awakening to the fact that corruption exists across all human institutions. They’re in shock and still expend precious energy venting. Greed, apathy and bias underlie the mechanisms influencing who gets funding and how much for researching various diseases and syndromes. Knowing that for decades now, I wrestle with indifference and a cold regard for the system. Juxtapose that against newcomers ranting and it rattles my stasis, jarring me back into dances with rage…rage at the system, rage at the odds that shite on my health, rage that some people approach MECFS as psychogenetic, rage that people actually believe they have control over whether or not they are sidelined by disease. Yes, you can eat your way to heart disease and diabetes. But no one with MECFS or other such chronic illnesses ate their way to their conditions. And many in our number thrived in great health pre-disease, on paths no one would associate with eventual disease. Yet here we are tossing out disclaimers no one should feel compelled to present, proof of the randomness of some of life’s harsher lotteries.

Suffice to say, post viral illness is very real. 30 years into it, I can acknowledge I’ve had it easier than folks with moderate to severe MECFS. But no healthy person would want the mild to moderate version. Along the way, the ones who get it paint a gorgeous map of the terrain, the territory known as chronic illness support. Family members and caring friends who recognize disease onset for the real and debilitating force it is distinguish themselves as a minority. Most people run to the hills, whispering mantras of toxic positivity, shoring up their fears with ideas that those who are struck down by disease must’ve done something to cause it. So, they must surely be able to prevent it in their own lives. Run, run, run. Sometimes I fault them. Often I don’t. I know what it’s like to think you have all the answers. I know why those delusions are so rampant. Life can be very scary.

My sister, Bamborough, deserves a lot of credit. She’s unwaveringly stood by me, not doubting the authenticity of MECFS. When looking over the text in the cards I’m listing in my shop, she stands out in my mind as the inspiration for their veracity and comfort. She embodies what everyone with chronic illness longs to experience in support. And she’s not alone. The father of my children, my children and friends (few they be) all provide the level of physical and emotional support every disabled person deserves. I am one lucky gal in that respect.

So, in response to the rattling of my cage by newcomers to the chronic illness population, these cards spilled their truths. The psychological needs of the chronically gaslit disabled languish, mostly ignored. And the capacity to be a support isn’t easily nurtured in our ableist automatonic culture. In recognition of these needs, my chronic illness support listings on Etsy are gradually increasing. Shown below are a couple renditions of the cards available (in a set of 6) for purchase and download. If you click on either image, you’ll be taken to my shop, Digital SoulSpeak. These cards are what I would’ve loved to receive at the beginning of my long journey with MECFS. They represent the level of affirmation I experience from those to whom I’m most connected. And in celebration of their love-in-action potency, I’m only charging $1.43 for most of these sets. 1 = I, 4 = Love, 3 = You. I love you, the person who wants to learn how to be there for the invisible disabled in their lives. I love you, the people ranting at the apathy as they wonder whether or not to hope. I love you, folks who recognize when you don’t have your health, you still have who you are and how you face life.

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2023 So Far…

How do I convey 6 months of epic challenge on many fronts, what has been going on?

Deep breaths, self-love and a lot of room for grieving.
Tense, gaining more awareness of the person I’m becoming.
Settled into the truth that my life belongs to me (as a former fundie, this is crucial).

But overall, I find myself defining this year as exactly that: definitive.

Someone absolutely, poignantly and beautifully precious to me and to my immediate family died suddenly.

She lived on borrowed time, but nothing prepares you. I’ve been unable to write any kind of memorial or much of anything at all. Instead I’ve either actively allowed the grief or ballistically refused any emotions associated with the grief. It turns out there’s only so much active and outward grieving a body can take within a certain timeframe.

So I’m finding the year punctuated by a few pauses. Particularly after the loss, pause/crash prevailed even if it looked like I was functioning. And when I’m not paused, I live in a way that feels like a tribute not only to the preciousness of my own life, but especially to all that Sarah couldn’t participate in for long, if at all. Just typing that little bit conjures tears. But I am seldom allowing much of their spill. It’s more about one step, then the next.

And along the way, the many newsworthy goings on hammer away at peace if you allow it. Need I state the obvious about our nation and the world? No. We all get it. But today, most of us awakened to the ongoing progress of holding the former president accountable. Fingers crossed for an actual measure of accountability and justice.

Besides all of that, I’m working even harder on what I think about and how I think while remaining aware of the energy I’m brewing. The aim is to cultivate everything that imparts creativity within myself and my world here. And I find the work of cultivation mostly to be about love and acceptance. Love informing the tasks at hand as I create and work to manifest a measure of financial abundance. “Manifest” is only used in that I acknowledge my attitudes and beliefs can either serve me or sabotage me. I acknowledge there have been times when it seemed like the universe brought me what I focused on receiving. There’s a bit of that sort of manifestation awareness at work, too. But the tricky, potentially upsetting bit rattles around reminding me that our main source of income is gone for now, daring me to indulge in fear, desperation.

Mostly the path has been massively stressful unless I insist my thoughts and actions along lines of resilience, faith and strength. And so, that is where I reside as much as possible. This insistence encompasses the ongoing work towards now keeping and improving my baseline of activity and rest. As a person with MECFS, the baseline can be lost and never retrieved depending on the circumstances. So far, retrieval has always eventually occurred for me. I’ve been very fortunate. Once a baseline is established, it’s wisest to maintain it for a period of 3 to 6 months (or longer should the MECFS experience be especially risk saturated). Beyond that, the path unfolds with gradually adding on new activities and then following those additions with maintenance months or years. It’s a tedious work wherein you seek to hold to a faith in your body’s ability to recover while recognizing MECFS can put you in the spin cycle out of nowhere. Maintaining a non-traumatized relationship to your health both challenges and galls simultaneously. So, insisting thoughts of resilience, faith and strength, saturating myself in love and patience bolsters and affirms as I work and play towards hopefully broader fields of living.

I would say that I can’t believe I’ve not posted since the holidays. But then I look at the trail behind me, and it makes plenty of sense. Throughout these challenges, the focus on Digital SoulSpeak continues, also experiencing pauses along the way. That I can even attempt an Etsy shop reveals how my world enables me, a person with MECFS, to focus on projects most folks with this illness can’t even remotely consider. I’m daily aware of the sheer luck and privilege at play in my life. My gratitude flourishes every time I recognize those bonuses as does a longing for everyone to experience the same. That’s not to say this has been easy. I’ve channeled the strength I’ve gained towards the shop and have had to rely on others for daily basics most take for granted. I would have visited my daughter when she noted how long it’s been since I’ve made the trip to see her, but now it’s just not possible. And though my visits have encompassed previously understood days of rest once I arrive at my destination, my energy needs to go towards creating and managing revenue streams. The risk is too high at this point.

So, it’s no surprise that the world of the ignored and underserved chronically ill remains uppermost in my thoughts. As I develop printables for Digital SoulSpeak, my aim is to shed light on that same world. In the meantime, my hope is to begin a website for the purposes of sharing and selling those products (and others) as I’m able. For now, my blog here should suffice as a platform for sharing the shop’s progress.

And that is it, in a rather large nutshell, the past 6 months.

Onward…

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In A Warming Sun…

I look out the window as it whispers quiet melodies of all the goings on going on without me. And yet I wonder whether goings on go on without me or if maybe we’re all connected. And if we’re all connected, are not the goings on of others also my own? If only I could know the quickened pulse of one dancing fit and free and not the rapid race of a heart working overtime for a body whose health declines more than sometimes, sometimes often without provocation.

In my own way, I do feel connected despite the isolation MECFS insists. I hear the city sounds outside my door, and sense a world full of doing. My heart tells me we are one, and in this moment I feel full. And while I feel full, I also feel the many things beyond my reach. Were I to grasp them, therein would a fullness peak, eventually waning. But I would remain.

photo by j. ruth kelly, all rights reserved

What I come to in my non-goings on of a life is that we all must land in the same place. We all face the inner world, an immovable yet flowing eternity. And that same world goes with us whether we are fit or frail and that same world remains when the noise and clamor fades.

I long for more doing and going and yet the fullness of the moment rewards me just the same. I am grateful to be here witnessing the play and tussle suggesting endless horizons. I look out the window knowing their promise.

They only guarantee experience.

Horizons don’t make us more free or more present. They simply pose a chance for more ways to grow and love in a world aching for peace.

But I look out the window and accept my rootedness for now. And I remember when I last chatted with my maple friends forever rooted in my front yard. They whispered a contented grace. They daily taste the world as whole and one, gathering life’s echoes as feast in a warming sun.

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Prayer #1 (For Michael)

May your whole body/soul/spirit shift in alliance with the well-being
of eternal and perpetual grace, renewal and wholeness.

May you breathe deeply into your worth and know the love that upholds your life
and has held you close all of your days, even when you least felt that comfort.

May you stretch your arms out wide, reaching far and further still out to places
you feel most inhibited, afraid to reach for fear of rejection, for fear of vulnerability,
for fear of your own beauty being more than you can contain.

May every corpuscle, muscle, vein, artery, organ, system,
neural impulse, heartbeat, rumble of your being vibe with the jive of clarity,
unobstructed, unhindered, blossoming wellness.

May you soak up the sun of healing.

May you know the love that upholds us all as a bliss-force flowing
through every fiber of your being
as you breathe in, breathe out,
breathe deeply the life force sustaining us all.

j. ruth kelly, 2020, all rights reserved

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Profoundly Human Endeavors

“Even once the true cause of my disease is discovered, if we don’t change our institutions and our culture, we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policymakers are not immune to the same biases that affect all of us. We need to think in more nuanced ways about women’s health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients’ stories and we need to be wiling to say ‘I don’t know.’ ‘I don’t know’ is a beautiful thing. ‘I don’t know’ is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then rather than fear uncertainty, maybe we can greet it with a sense of wonder.” Jennifer Brea on CFS/ME and the ways the medical model can improve for all of us.

j. ruth kelly, all rights reserved
j. ruth kelly, all rights reserved

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Myalgic Encephalomyelitis aka Alienation

I so often wrestle with whether or not to express what CFS/ME does to my life, how it shapes the landscape of my mind, my will. More often, I choose to sparingly articulate how it impacts me, simply in the interest of sanity. But I find, as more and more people wake up to the truth of this disease, that it is becoming more empowering, less overwhelming to go ahead and speak up. The ignorance is melting away as people realize it’s not a psychological issue but a real assault on the body.

As Jennifer Brea experienced initially, so did I. Fever over 106. Pneumonia for the first time in my life. Early 20s. Never. The. Same. After my primary care physician sent me in many different directions seeking a diagnosis, we landed on the diagnosis of CFS. And the alienation began right there in my doc’s office, with her set of prejudices awaiting me like a box, a prison cell.

Brea’s TED talk speaks to so many of the issues confronted by those who walk this path. Her words, in their affirmation of the validity and impossibility of the struggle, bring balm to those who have suffered this illness for a long long time.

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Hammock’s Sway

Healing hammock ride the sky, in my lingering repose.
Silence washing, flooding,

Crash this deafening noise, all the clamoring
impossibilities’ haunt of rhythm’s worst explosion, enigma’s crueler clarity
suggesting daunting end of days sooner as I

long for, work for, breathe for later, much later.

Wipe away my necessary practice,
the trauma of doling out tomorrows’ chances
via feverish weighing today of…
how much too much, just enough
or not enough now will facilitate more of a future, not less…
why must all these labors somehow suggest
no now and no when or where in which to be or go to or later for which to aim
when their aim is to seize assurance?

So, in my fevered necessities,
somehow slip me past the grasp that deadens days
and back into flow…

Take me to obliteration lovely, blanking out the doling minutes, seconds…
Bind me to places where eternity emerges, maybe there shimmering
on the edge of twilight…or here unveiling the timeless rule of leaves,
and trees holding hammock’s sway.

20141018_163212

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Own Your Life

This reaches me on several levels because, for one, it shows a man giving his body, his will, his time to the military. On some levels, this fact alone is upsetting to me. I’m not anti-military or unappreciative of the hearts of those who mean well when they join the military but I do struggle with the choice. These folks are giving their will and good health to agendas so corrupted and obscured by greed and lust for power and control, it’s difficult to see even the potential for positive karmic purpose in the choice so many make to serve. But, I support the human, the person.

I love what is expressed here about “The Secret” and about owning your life. And as one who longs to sprint again and who has some major challenges – not with an almost 300lb weight issue or injury from parachuting out of airplanes, but with the considerably daunting reality of CFS – this rendered me weepy and appreciative. So, Happy Memorial Day to those who find it meaningful. Let this be a memorial to the human spirit, the tenacity both in and out of corrupt agendas and into the ownership of our lives and our power.

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One Foot, then . . .

the other. I hear this is good for progress. But I’m finding, once again, that sometimes progress is one foot, then the other up on couch for an hour while the body gets back in sync with my dreams. Or is it my dreams get back in sync with my body? In any case, overload and CFS beg a re-visiting of what is defined as success. I sit back and ponder the different comments and input I’ve had over the years regarding this chronic struggle. Some saying I got better when I quit checking my temp (as if I do this often) when what happened is this: I gave up outwardly showing my effort to figure out what was wrong; I popped 8 aspirin a day and downed 6 cups of coffee and crashed for hours on the weekend. Those were the really irresponsible years back in my 20s when the income was mostly on me and the former hubby was in school full-time and I was telling myself it would all pay off, my turn would come. Now I can eat all the right things consistently and have horrible days consistently. I’m good friends with Stevia. I adore raw veggies. I’d rather go hungry than eat McDonald’s. Somewhere between my 20s and now I had good years with this illness. Even eating badly, and thriving within the restrictions of CFS; running, working out, lifting heavy objects, planting my garden. It’s a bit insane. So.

This monkey got no rhyme or reason ‘cept “hey, you livin’ a bit much now, I’ll show you!” Or “hey, you laid low and I’m still gonna kick you hard today.” So, there it is. Another great tidbit useless to me: “Good boundaries help!” Righto. Good boundaries don’t help. I can, as stated previously, have a superb run of perfect boundaries (you know, like when I tell my kids they can have their emotional breakthrough at 10pm without me because I have a schedule and their soul work just has to wait. *sarcasm alert*) and still find myself kicked around by an unpredictable run of fever, joint pain, muscle pain/weakness surreal and oh did I mention short-term memory loss? I sound like I’m whining. I’m not. I’m just angsty. Supplements get old. Repercussions for holding a baby when I use to be able to do Teresa Tapp’s hoedowns and workout while running a low-grade fever and chasing a 4 year old yeah not all at once, mind you. And you don’t intentionally do things while running a fever (ok, not usually. sometimes you just do it because you’re it and 3 kids and) See, go ask the thoroughly boiled frog if he noticed the water getting warmer…

You know, I’m not happy about this nasty “syndrome” today.

And so I must insert the positive attitude now. Right? Wrong. I get to be in this frustration fully and know, accept, believe that this cycle will burn itself out, the monkey will tire of toying with me and I’ll get back into a more manageable zone. It’s not “negative” to see things for what they are, to experience angst or be completely put out with useless tidbits of “holier than thou” helpfulness. People assume, arrogantly, that if you’ve had something for over 20 years it must be because you didn’t do your homework, need to cut something out of your diet and didn’t know that having good boundaries makes things better. But tell them you have lupus and they shut up. See, it’s because lupus is a “real” name of a “real” illness whereas “chronic fatigue” is just a “syndrome” and it must be in your head. I still get advice to take an anti-depressant. I may be angst-filled today but I’m not depressed and depression isn’t running the show here. I remember years of depression. And CFS wasn’t kicking my arse back then! Go figure!

So, I move from useless tidbits of information posing as “help” to what is defined as “success.” And I run to Jeff Brown for that because he doesn’t have CFS and his verbal skills are way beyond mine right now. “Surrendering to the not-knowing. Befriending confusion. Flake it til you make it. Live with the question.” I’d type up the 10 sentence rally that had me bawling like a baby with appreciation but I don’t have the energy to find it. Just let’s say that success is not defined by anyone but the individual living her life as best she can, digging in the dirt of her shadow, becoming more and more aware, growing, honoring her soul’s code and transforming both on and off the couch (and grouch mood!).

And for all the gurus out there who really believe that airing your angst is a nowhere game all I can say is BAH! It must get OUT. Living in angst perpetually? Groucho all the time? God no. But this moment, man, I’m stomping on the inside and growling at this illness while my higher self chuckles, knowing that in 5 minutes I’ll loosen every muscle and surrender. And the gratitude never went anywhere, folks. We aren’t either/or mechanisms of assembly-line productivity. We are humans. We are both/and/all-at-once and when we figure that out, we’ll thrive even more, ill or not…

Back to the couch!

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