Chronic Health Conditions Archives - Auramama

I’m doing everything, why do I still feel like s**t?

Posted on 10 May 202312 May 2023 by Leora Leboff

This piece is an act of loving arms being wrapped around those who are in midlife, and when all is stripped back, are having an effing hard time.

The raw reality of shit hitting fan, and a feeling of no way to reach the off button.

To those who are eating for health, meditating, Yoga Nidra-ing, resting, connecting to joy and pleasure, slowing down, using breathwork, taking herbs, homeopathy, tapping into creativity, maybe in therapy, perhaps having regular body treatments…but the struggle is still painfully real.

Those who are finding midlife incredibly challenging, but balk at hashtags such as #menopausesucks.

No, you hold the firm belief that menopause is a time of growth and education about ourselves, and that as we age we are not driven by the continuous Western patriarchal narrative, that we must hold on to our younger selves. As our older selves are worth that much less. Those who have no desire to cling on to youth and oestrogen as the route to vitality. Those who embrace the saggy parts of us, the grey hairs, the wrinkles that speak volumes about our lived experience. Yet, despite these firmly held values on ageing, are still ticking the symptomatic boxes of perimenopause and menopause (medically speaking).

You’ve read the best books (and there are some brilliant reads out there at the moment), limited your social media to inspiring voices on midlife and menopause, with perhaps a fantasy that health and wellness will ease into your psyche, because the positive narrative about the menopause experience is the way to stay empowered and healthy. But it’s not actually a reality for you. A positive message IS a great thing, but bypassing reality when you’re in the middle of a shitstorm may only help on a surface level.

You may align yourself to the energies of the moon, the seasons, choose crystals to pop in your bra (if you can still handle wearing one), notice when planets are in retrograde, connect to guardian angels, have faith that Spirit and the Universe have your back, or maybe a religious belief gives you equal comfort. Maybe you’re EFT-ing, EMDR-ing, TRE-ing. Perhaps there are breakthroughs, releases, yet…there is no real let up to your physical or mental health challenges.

I’ve studied, taught, actively share the positivity around cycle awareness, work deeply with the Menstrual Seasons, co-developed the Life Seasons model which is right there in print, in the wonderful Secong Spring by Kate Codrington, supported others to have empowering menstrual and menopause experiences, extolled the powers of midlife, raised womb wisdom awareness, and personally, I’ve been ‘doing the work’ continuously for many many years.

In collapse

Yet, I find myself in perimenopause, in collapse. Some would call it burn-out. The fan is still flinging shit around, which honestly is the last thing you need during a hot flush or night sweat.

What this looks like for me is a ramping up of symptoms of ME/CFS, fibromyalgia, PoTS or a similar form of dysautonomia, IBS and various gastric funnies, possibly adenomyosis (the pain is horrifically real…), PMDD, ADHD.

HRT is not an option, due to hypersensitivity when introducing hormones into my body, or any medication for that matter.

This info isn’t shared for sympathy, it’s really not. Please don’t let your head do a sympathetic side tilt. It’s simply a statement of fact and where I am right now.

I’ve looked for a voice on social media that is aligned to where I am in this cauldron of perimenopause, but haven’t quite found a fit.

I’m not sure if I have the energy right now to become that voice, which makes this single blog post, a holler of appreciation, recognition and allyship.

As an act of deep kindness to myself, I deleted all the socials from my phone last year, and took a three month break from the ‘noise’. When I returned, I stayed hidden and not engaging, while I eased myself back in for a few months. This gave me a chance to observe, ignore and often rage!

~

Polarised menopause

Witnessing the polarised output when it comes to perimenopause and menopause is infuriating and heart breaking.

In one corner of the ring there’s HRT as a cure-all. Without it, we’ll all crumble and die an awful death, if we don’t keep our oestrogen/progesterone/testosterone topped up. The message that we must retain our oestrogenic youth, or else we’ll end up on the forgotten heap, mainly because menopause is a medical condition that requires fixing. There are few words in this corner on the subject of lifestyle to care for yourself in midlife.

I am in no way against the use of HRT, I have seen it support the menopause journey, and it’s hugely important that we have choice in our menopause care. It’s simply the message that everyone who is in menopause must take it or else you’re done for, I find hard to swallow.

In the opposite corner of the ring is the message of empowerment through aging proudly and powerfully. Possibly, but certainly not always, without HRT. The declaration in this corner is that menopause is a life-affirming time, definitely not a medical issue to be diagnosed, rather, a rite of passage like menarche, our first bleed. A time when we may feel as though everything is falling apart, but we must listen to the messages coming through, to enable us to enter post menopause, Second Spring, a renewed version of ourselves.

Although my hat falls to this side of the ring, sometimes there’s not enough space given for the struggles that are real. There’s a slight undercurrent of failure if you’re not getting on top of those physical, mental and soulful struggles that show up in midlife. Or maybe that’s my inner critic grumbling away. Perhaps, when the message is only that of menopause positivity, it becomes a bit othering. It’s not always easy to truly feel positive about menopause when that shit-storm is raging.

What it looks like on the ground

I’m 52, with a cycle that is more regular than ever in my life. There are clear changes; shorter bleed time and much less bleeding. I feel the diminishing nature of my blood. I’m ovulating, early, regularly and with vigour, which as the months and years build, I feel a sigh of disappointment escape when I see the ovulatory mucus arrive.

The disappointment is directly linked to the extreme pain I experience while I’m bleeding. My womb is happy place and she bleeds peacefully, the agony I experience is in my groin – an odd and disconcerting area of pain to navigate. I don’t think medically I’ll ever get an answer, but the intensity is how endometriosis or adenomyosis is described. A couple of months ago I named this pain Cujo to help me connect with the rabid dog-style of agony I experience. There’s nuance to my feelings around my cycle. Yes, I am immersed in the beauty of menstrual cycle awareness and loving my cycle, while also knowing that I’m guaranteed to be in a distressing amount on pain, and all that’s brought with it (nausea, not knowing where to put my body, no escape, etc). I’d be lying to say that this pain is an empowering experience. No, it’s a traumatic experience.

Symptoms of the ME/CFS and fibromyalgia all intensify in the build up to bleeding. I have to acknowledge what I’m not capable of doing for a week before and during my bleed. That’s on top of the ‘normal’ rest encouraged with the practice of cycle awareness and menopause self-care.

In reality it’s a perfect storm. Perimenopause, ME/CFS and Fibromyalgia, plus the number of “friends” it brings with it (PoTs/dysautonomia, gastric issues, etc), and ADHD, and whatever is causing Cujo to bear it’s rabid teeth. It’s important to say, for those of us who have a ‘shopping list’ of conditions, it’s no coincidence. Something is happening systemically for all this to show up. I’ll talk about that later.

I have no clue what my body will be doing once my menstrual cycle has stopped, and there’s no more rise and fall of oestrogen, progesterone and pals. In all honesty it’s a scary thought…can things get any worse?

How I resource myself in these muddy and challenging waters?

Through my search for ways to ease ME/CFS, it’s become crystal clear that trauma, a combo of early developmental trauma, birth trauma, developmental trauma, ancestral trauma, shock trauma, and long term stress, has put me into a deep state of fight, flight (ADHD) and freeze (ME/CFS, fibro). The collapse I talked of earlier.

When fight, flight AND freeze are heightened, our bodies and minds will shout out with the syndromal conditions that are on my ‘shopping list’ (seriously, I’m ready for a refund).

As these traumas have been held in my nervous system, unknowingly, without the healing amount of loving care and attention needed, all parts of me are now calling out to be nurtured in a different way.

I am currently placing a huge amount of trust in the depth of work I’m doing to regulate my sympathetic nervous system, and thaw out my deeply frozen parasympathetic nervous system.

Holding the belief that entering the menopause phase, the Life Season of Winter, with a more regulated nervous system, feels the kindest way I can nurture myself.

We can cognitively work with our nervous system, which I’ve done for eons. I choose to be in nature as often as possible, eat foods that bring me joy as well as health, laugh with friends and family, self-pleasure, sing…you’ll have your own list of nervous system calmers. But I’m learning that these serve more as resources, rather than having a lasting impact on the dysregulation. It’s the reason why all the herbs, homeopathy, self-care, self-compassion, food for health, etc, have not really made a dent in the health challenges I experience. Instead they have only spiralled downwards the further I head towards menopause.

There are many great somatic, polyvagal, nervous system teachers out there. I found a teacher who really spoke to me when I heard her say that she doesn’t ask her students and clients what their trauma experience has been. Just how it’s showing up for them in their nervous system. We can get bogged down in story and identity when we’ve experienced trauma. Her work came from a different, more liberating angle, and in the months I’ve been doing the work I can see definite signs of regulation and thawing taking place. It’s very early days though, and the neurosensory exercises and knowledge are there to be integrated into life, not just for the short term.

If you feel drawn to this particular teacher, her name is Irene Lyon and she has a ton of free resources on YouTube and via her website.

I’m also under the care of the Optimum Health Clinic for nutrition and psychology coaching. The clinic only works with folk who have ME/CFS, fibromyalgia and would also be of support to Long Covid.

Community

We can’t do this alone.

Yet it can be hard to find allies who really understand each of our unique journeys with perimenopause and menopause, to feel really heard.

I co-hold a space on Facebook with Kate Codrington, a group called Woman Kind, and it’s a true balm to the polarisation of social media midlife narrative. We hold space to simply drop your bundle and share. No judgement, no advice unless asking for some, just support from a courageous, down to earth and beautiful-souled group of folk. We usually keep the group closed and private, only opening up membership (no charge, it’s the best unpaid job in the world) about once a year.

Right now, we’re open to new community members, closing the doors again on 21st May 2023 if you’d love to join.

Our menopause challenges, if we have them, are so individual and can leave us incredibly lonely; yet we find common themes that allow us to know we don’t have to travel this path alone.

Personally, I’m here with a virtual hand on your back, and an extra nod of understanding if your journey in any way mirrors mine.

You’re not getting it wrong

Posted on 16 June 202016 November 2020 by Leora Leboff

“You’re not eating the right foods

You’re not exercising the right way

You don’t practice enough gratitude

You’re not spiritual enough

You’re not evolved enough

You’re not meditating enough

There aren’t enough positive thoughts in your day

You’re not reading the right books

You’re not listening to the right teachers

You’re not taking the right supplements or enough of them

Or on the other hand…

You’re not choosing to take medication, as honestly, you don’t need to be a martyr to pain…”

These are just some of the insidious words that can swirl around our heads when we’re on a healing journey, particularly a healing path with a chronic condition.

Next year, I will have spent a quarter of a century in the well-being community. We’re passionate about our craft, our skills, our knowledge. We’ve seen the wisdom we impart work beautifully with clients. We work from the heart, and we work as a force for good. All of this an absolute truth.

What happens, though, when we and our clients are surrounded by the vastness of wisdom and knowledge? With so many choices and avenues to head down?

Is it possible that there’s the potentially creeping message of not getting it quite right? If you’re not seeing improvements in health or wellbeing, you’re not doing enough? Or you haven’t found the right healing path? And that most insidious phrase of the inner critic…you’re not enough?

We are, of course, constantly evolving and learning, and sometimes the path that will be of most benefit, is still waiting for us. We need to be careful though, as that skulking message of not being enough, can worm it’s way into our pyche.

With my practitioner hat on, I direct my energies to the healing potential of womb work, the power of menstrual cycle awareness, and how to move through menopause in a conscious and reflective way. Yes, I’ve been evangelical about the modalities, staying true and authentic to the way I have seen the work change lives, my own life included.

Without hyperbole, the work has readied me for the challenges that I may or may not face over the course of the rest of my life.

Better days, but not getting better

How do practitioners and those around us respond to a condition that is also not curable. In fact a condition that is as hard to comprehend, as it is to pronounce, and therefore not easy to engage with.

I am a practitioner, but also someone with a chronic and incurable condition.

I have a cyst in my spinal cord, part of my Central Nervous System. The cyst is known as a syrinx, and those with a syrinx have a condition called Syringomyelia. In my case, it’s congenital so the syrinx formed while I was in the womb.

Strange terminology, and a condition that is considered to be rare (although I’m not convinced it is that rare, but that’s for another time!)

It’s interesting having a condition that is not only unrelatable, but hard to pronounce! Due to it’s “otherness”, the condition, by it’s nature doesn’t create a culture of general understanding. It’s a little too alien for that.

Although, to be fair, information available about it is very limited and, at present, not enough research in the UK has been put into it.

The added bonus of Syringomyelia is that many find that it’s not a stand-alone condition; it’s usually present amongst other syndromes and medical challenges for us.

I’ve been told I also have Fibromyalgia and have had Irritable Bowel Syndrome for as long as I can remember. Whether you’re in the well-being community or not, Fibromyalgia and IBS are more familiar terms; more relatable. More information and resources are at hand to share, and therefore to offer the possibility of help and support.

On the scale of how much these syndromes affect our lives, IBS can be anywhere between an annoyance and debilitating; a Fibromylagia flare up on the other hand is most definitely debilitating.

If you add Syringomyelia back into the mix though, what you have is a condition where there’s the possibility of the Central Nervous System being interrupted, that the body’s reactions and responses may not be as expected.

This makes so much sense to me after the many years of trying numerous modalities, and being confused why I seemed to respond in the opposite way. I always wondered why acupuncture exacerbated symptoms!

The moment of epiphany for me, was listening to a talk recently given by Anthony Williams, known as the Medical Medium. Much of his work is directed at those with chronic conditions, such as Epstein Barr, Chronic Fatigue Syndrome, Fibromyalgia and digestive issues.

He was talking about those of us walking around, trying to cope with chronic conditions, and not knowing WHY we have them. He has his theories, his belief systems and methods of improving health. He has a huge following, however his protocols don’t resonate with me personally.

My epiphanic moment though, was realising that I DO know the WHY for these chronic conditions I’m living with. My Central Nervous System has an interruption in it. I have a syrinx, a cyst in my spinal cord. Not a cyst ON my spine, but IN my spinal cord.

In it’s simplest form, the Central Nervous System is the part of us that tells our body what and what not to do. It’s the communication hub for everything we do, from breathing (communicating with our autonomic nervous system) to urinating, to moving.

It’s therefore a crucial part of the human body to not be firing at full capacity!

For those of us who have been supporting ourselves for years, spending probably thousands of pounds, trying to find foods, exercise/movement, spiritual guidance, and modalities to support us, somewhere along the line, the message has popped into my head – “I’m getting it wrong”.

This has called for me to take an about-turn in perspective, and in the process, ease of my own mental health.

How might it feel to be at peace with NOT trying to get BETTER, but instead focussing on ways to have BETTER DAYS? Suddenly meeting Syringomyelia becomes less of mountain to climb.

In our “fix-it” culture, though I’m not sure how well that sits.

My question is, who’s with me?

Who’s on their own journey with a chronic condition and simply wants to enjoy better days?

Or just as potently, who, as a practitioner can support those with a chronic condition to enjoy better days, rather than looking to fix the condition?

Not giving up, but not fighting

What does it mean, living with an incurable condition such as Syringomyelia? Yes, there’s the possibility of it not getting any worse, however, it’s clear my symptoms have worsened. Yes, there’s the possibility of it progressing, that’s a fact, but absolutely NOT A GIVEN.

However, bear in mind that straining when doing a poo, or picking up an object that’s too heavy are ways that a Syrinx can worsen. It’s not necessarily hard to create situations for deterioration and progression.

Perhaps it really is as simple as relinquishing to knowing that I will NOT get better, but I WILL feel better on some days.

Some folks use the term “warrior” when it comes to fighting chronic conditions.

For myself the “warrior” term, and “fighting” is counter intuitive. If I’m chronically fatigued, why would fighting be a congruent and effective way of approaching these conditions?

What if “being” with the condition, listening to what it’s asking of me, conversing with it, playing around with what might help, my nervous system can be calmed rather than over-burdened.

This approach really is born out of the menstrual cycle and menopause awareness work: listening to my needs. Not necessarily conforming to societal and linear expectations for health conditions to have a beginning and an end. There’s so much more in between.

The possibility that following the path of least resistance, can lead to a more soothed soul.

I do though, also understand the need for others to step into warrior mode, it places us in a stance of action, not taking what we’re being faced with lying down, it’s something to overcome. I get it, I really do. It’s just not my chosen direction for this situation.

If I was looking at a condition that was curable, had an end point, yes I subscribe to standing as a warrior. In fact, it was how I approached having ankle surgery last year. With one foot in surrendering to the length of time the recovery would take, and the other in warrior mode; working diligently and valiantly, seeing the ankle healed and holding me with certainty and strength. Little did I know that my Central Nervous System was choosing a different path for me.

The reason I feel compelled to write this piece is as a support to those of us living with chronic conditions; that we’re not getting it wrong, whatever healing path calls us.

Not getting it wrong to be looking to create better days. It’s not fatalistic, it’s calming and a relief to stop the quest for health perfection.

And lets face it, trying to perfect anything in these Covid times, with all the outside pressures of living during a pandemic; it’s just a pressure too far!

If you’ve sat with me as I’ve held space for you in a treatment, led a meditation for you, held space in circle, heard your words; you know that I always invite you to meet where you are, that all is as it’s meant to be in that moment.

The message always is – you are not getting it wrong and that you are enough.

I’m not getting it wrong; I am enough.

Edit:

It’s been so insightful hearing other’s experiences who have been kind enough to read the piece. The words of a wise yoga teacher have stayed with me. She shared the yogic perspective of the Warrior; that of strength, courage and resilience, rather than of fighting.

It made me take a breath, and acknowledge how all of the warrior aspects have kept me moving, learning and even supporting others in the work I share.

At the beginning of the year, I set an intention of TRUST for 2020, you know, a word of the year kind of thing. Nearly every day I’ve spoken a mantra of ” I welcome TRUST (yes upper case TRUST!) into all aspects of my life”. Dear goddess, has it held me while symptoms have worsened, other challenges have come my way, and in the outside world, living through a pandemic!

Is it possible to be a Warrior of TRUST!