vestibular disorders

She Said the Thing

/ Lauri Ann Lumby / Leave a comment

The truth of chronic illness

This past week, I had what I thought was going to be a routine session with my acupuncturist and Traditional Chinese Medicine practitioner. It ended up everything but routine as that morning ended up being “one of my bad days” with unexpected and anxiety provoking symptoms. The acupuncture treatment helped ease the symptoms and Megan gave me instructions to follow up with my primary care doctor “just in case” there is more that needs to be explored. (My primary care and I are currently exploring a possible thyroid issue.)

It wasn’t this that made this week’s session remarkable, however, it was the thing Megan said. I’m not going to be able to repeat it verbatim but it was the exact acknowledgement that I needed to hear. In her compassionate seeing, Megan recognized the very real fact that most of the time, I feel like shit. Following that up with the masking that I do to make it through each day despite feeling like shit. I took Megan’s hand in mine and through tears, thanked her for SEEING ME.

Because this is the reality, I do feel like shit pretty much every day. Between Epstein-Barr, permanent vestibular neuritis, panic attack disorder, being a highly sensitive person, neurodivergent, and having polycystic kidney disease, my baseline is somewhere around 50-60%.  I’m tired and cold all the time. I’m always suffering some version of mild vertigo (giddiness). My chronic headaches have been better, but as I write I’m on day 6 of a constant dull ache. I’m on all the medications to manage my kidney disease, and every one comes with their own set of side effects. Ugh.

I don’t write this in search of pity. I share this to reveal the whole truth about chronic illness and to point out that we live in a world that has no real support for the chronically ill. Instead, we’re forced to put on a happy face, go out into the world, work to earn money to pay our bills, grocery shop, exercise, stay fit, eat right, and not complain about the fact that while we are doing all these things to make it in this world, we often feel like complete shit. Pushing through the pain, fatigue, etc. then just makes us feel worse.

The chronically ill are invisible in our world; and yet we make up 60-90% of the American population. This means that every day, 60-90% of the people we encounter are feeling like complete shit while trying to complete the tasks required of them in a capitalistic culture. Other than disability income (which very few qualify for), there are no safety nets. Zero. Zilch. Nadda.

I can’t speak for others who suffer with chronic illness, but for me, I’ve carved out a way to make a living that (somewhat) accommodates for my vulnerabilities. At the same time, it is a constant effort to show up for work. I’m fortunate to have clients who understand if I have to miss a day or reschedule.  Making this choice, however, costs me in real US dollars so I reserve that right only on my worst days. Often I show up even when feeling like I really just need to stay home and do nothing or sleep. I’m also grateful for the unexpected and often miraculous ways that financial support shows up, allowing me to be more gentle, compassionate, and caring toward my fragile body.

And today, I’m especially grateful to Megan Bartelt, L.Ac. Dipl. Ac. for through her words, I am finally feeling seen. 

The Effects of Trauma

/ Lauri Ann Lumby / Leave a comment

Trauma is weird. Trauma is weird because we don’t always know we’re experiencing trauma until its effects accumulate and begin to come out sideways. Trauma is also weird because every person experiences trauma differently.  Some traumas are obvious and expected, others are not. If you are in a war zone and having to deal with constant life-threatening situations, you would expect that you might experience some adverse effects from that trauma. Some people, however, seemingly don’t. If you are in a physically abusive marriage or suffered sexual assault, you would expect to suffer the effects of these traumas. One does not necessarily expect disappointment, heartbreak, loss, or betrayal to be experienced as trauma – but for some they are.

Trauma is weird. My trauma is not from war or physical abuse. What I can now identify as the traumas that eventually led to a diagnosis of CPTSD (Complex Post Traumatic Stress Disorder), I did not necessarily think of them as traumatic at the time. I’m a strong, independent woman and that’s how I got through those traumas – truly by sheer force of will and stubbornness – mixed in with a good dose of resentment. I made myself survive.  I forced myself to weather the storm. I pushed myself through it all – never attending to the deep heartbreak I was feeling because at the time I was just trying not to collapse under the weight of it all.

Well….eventually that all caught up to me. All that forcing did was push the trauma deeper and deeper into my psyche where it built up and accumulated until it started coming out in symptoms of depression, anxiety, hypervigilance, and eventually full-blown and traumatic panic attacks. I’m also convinced that all of this pent up trauma is what made me vulnerable to the bizarre ear infection that permanently damaged my vestibular nerve – causing my now ongoing issues with vertigo, etc. which now prevents me from driving any distance without great effort and no longer allows me to drive on the freeway – dramatically hindering my previously taken for granted freedom of mobility.

Trauma is weird. I have tried to explain my trauma in the past and to those listening, it just doesn’t make sense. It doesn’t really make sense to me either. I can point to the situations, experiences, individuals and say – “it’s their fault.” But really, my trauma is less about fault and more about cause. The cause, if I’m truly honest with myself, was LOVE, and the trauma that one experiences when that love is betrayed.

That’s it in a nutshell. Every trauma I’ve experienced has ultimately been about the betrayal of love.

The easiest for me to speak about is my ecclesial trauma because in this case, there are no innocent bystanders who might be hurt by my words. I feel perhaps I’ve written of this ad nauseum, but in a nutshell – I once passionately and deeply loved the Church and the mission of Love I embraced on their behalf. I found my calling in the Church. I was enthusiastically supported in that calling, both financially and otherwise by the Church. I had planned to continue my formation and advancement in Church ministry as far as would be allowed for a woman. Then I wasn’t. All because I took Jesus’ call to Love seriously and accepted that call to heal and teach. It’s a long stupid story and on the outside to call this trauma might seem trite, but I can honestly attest that leaving the Church was harder for me than divorce and the trauma I suffered that ultimately led to my leaving is the greatest heartbreak I have ever experienced. My Church turned its back on me. If you understand the nature of spiritual abuse, you get it.

The other traumas I will continue to hold close to my heart. Suffice it to say, all were deep and indelible betrayals of love. When trauma is a result of betrayal, it becomes personal – and that’s a whole different kind of trauma – which is why it’s so difficult to describe and even more challenging to explain. It’s not as a result of a hit, a punch, or war, it because of a broken heart.  

No matter the cause of the trauma, the effects are mostly the same: anxiety, depression, panic attacks, chronic illness, hypervigilance, memory issues, situational avoidance, disassociation, feelings of overwhelm and cognitive impairment, auditory and visual processing disorders, chronic pain, and so much more. There are medications and therapies that help mitigate the effects of trauma, but in my experience, the effects never fully go away and are always lying in wait to rear their ugly head again – like recently. For whatever reason, my trauma decided to rear its ugly head causing ongoing increased anxiety and breakthrough panic. Whatever I had been doing proved to be no longer enough so now I’m (by doctor’s orders) taking a break from external stimuli, adjusting to an increase in medication, and looking at what other lifestyle changes or adaptations I need to take to continue to care for my trauma-affected mind, spirit, and body.

As an aside, I’m profoundly grateful to my employer who allows for accommodations so that I can continue to work and make a living. AND there are not enough supports in our system for people who have suffered the effects of trauma. For many, work is literally impossible and for the majority, there are not enough accommodations available to help them be part of providing for their basic needs without doing further damage to themselves. If my nervous system had its way, I’d be living in a cabin deep in the woods and all my needs would be provided for so I could just take care of myself, living as gently and quietly and softly as I need. Just sayin!

Is it Vestibular, PTSD, HSP, or Empathy?

/ Lauri Ann Lumby / Leave a comment

Yesterday, I had to leave work early. I had to leave out of a combination of stimuli that triggered – perhaps all – of the conditions I have: chronic vestibular neuritis, PTSD, HSP (highly sensitive person), along with my ability to feel the energy and emotions of others (empathy) so much so that it overwhelms my nervous system. The result was a combination of overwhelm, PTSD symptoms (inability to concentrate, focus, etc), anxiety, and a blaring migraine with a bit of dizziness. While any one of these conditions could have caused the symptoms I experienced, upon reflection, it was a combination of stimuli and conditions that created the perfect storm, making it near impossible for me to continue working while the stimuli not only continued, but increased. Thankfully, I have an understanding employer who is fully aware of my sensitivities and the deficits that sometimes accompany this combination of sensitivities. My work is also flexible, some can be done from home, and my responsibilities for that day were relatively minimal. My employer gave me a supportive smile when I told her I was going home, as she was aware of the challenges I was facing that night.

Not every employer would be so understanding or supportive.

I know I am one of the lucky ones.  In America, 2% of the population are considered empaths, 6% will have PTSD at some point in their lives, 15-20% are diagnosed as HSP, and over 35% of adults over the age of forty suffer from vestibular disorders. I suspect these figures are understated! My point is that a whole lot of people suffer from one or several of the conditions with which I sometimes struggle, and very few employers are understanding of or willing to make accommodations for said-conditions. With none of these conditions does one appear “sick.” For most of these conditions the symptoms are difficult, if not impossible, to describe, causing many, including medical professionals, to believe the issues might be “in your head.”

Literally, vestibular disorders are in our heads! For myself, I have chronic inflammation of the vestibular nerve which makes me sensitive to movement, sound, smells, lights, barometric pressure – and so much more. When I’m “triggered,” the results vary. Sometimes I just feel icky. Other times I’m bowled over by vertigo. Sometimes the vertigo isn’t full-on spinning, just a feeling of disorientation or unease. I sometimes get aura migraines, and other times full-body migraines where I can do nothing but lay on the couch with lights off and a blanket over my head. I NEVER know when the symptoms might arise but there are certain things that are consistent including driving (especially at freeway speeds), snow and rain, windshield wiper movement, low barometric pressure, and red wine. Ironically, red wine is also one of the remedies I have found for when I have a full-on migraine. Weird.

PTSD is even more subtle for me and thankfully with medication I haven’t had a panic attack in several years. I continue, however, to find myself sensitive to crowds, loud noises, a multitude of stimuli, and certain situations and/or conversations. One thing I’ve come to notice, which I don’t remember having before the experiences that brought about the PTSD – I now have some sort of auditory processing disorder – which could also be related to the vestibular issues. The disorder goes like this: if I’m in a crowd of people and someone, or multiple someones are talking to me, I literally can’t hear them.  All I hear is “wha wha wha wha.”  As one friend described it  – “Charlie Brown’s teacher.”  I can hear the sounds, but I cannot make out the words.  For years I thought I was hard of hearing.  My hearing tests all prove to be in the range of normal, and yet, these symptoms persist.  As an office manager, this condition makes my job difficult and overwhelming at times, and I have to repeatedly ask people to repeat themselves while explaining about the processing disorder.

As it relates to HSP and being an Empath, (insert shoulder shrug emoji).  If you are either of these, you get it. If not, there’s likely no way to explain it. The best way to describe both of these is that I feeeeeeeeeeeeeeeeeeeeeeeeeeeeel  everyyyyyyyyyyyyyyyyyyyyyyyyyyything. Your emotions. Sometimes your thoughts. Pending earthquakes, hurricane, or other global phenomenon. I sometimes know when something bad is about to occur. I can read your energy. I feeeeeeeeeel if you are a good or bad human being. I can tell by your body language if you’ve been abused. Sometimes I see it. It’s bad enough when it’s only one person I’m feeling, or one global phenomenon…….but if it’s a room of people or the whole planet is losing its shit, it becomes overwhelming which makes it difficult to stay fully present, to think clearly, and to remain focused. On some days it’s so bad that I can’t perform normal administrative tasks or even read a book or magazine for pleasure. After periods of intense stimuli, I just don’t have the bandwidth.

So yeah…….with (what felt like) a hundred people in the building and their children talking, making messes, asking for attention, some of them screaming…..I had had enough. Was it due to vestibular issues, PTSD, HSP or Empathy?  The answer is YES.  All of the above.

Again, a huge thank you to my employer and for the universe who put me in their path so I could have a supportive place to work from which I could escape if things become too intense. And my heart goes out to those who aren’t equally supported in their place of employment or who struggle to find employment due to what can often be debilitating symptoms – symptoms that are so invisible that disability won’t even take a look at them.

Illness Designating Power

/ Lauri Ann Lumby / Leave a comment

Our whole lives we’ve been told that illness means there’s something wrong with us.  What if the reverse, in fact, is true?  What if illness is a gift that designates our power? Can we take what we’ve been told and have chosen to believe and turn it on its head? What if what we’ve been calling illness (chronic illness especially) is really the body’s only way, in an upside-down world, to create the environment the Soul needs to thrive?  What if chronic illness is the body responding to abuse of the Soul?  What if when suffering chronic illness (ie: fibromyalgia, chronic fatigue, Epstein-Barr, migraine, vestibular disorders, anxiety, depression, panic attacks) there’s nothing wrong with us but is our body pointing out everything that is wrong with our world? What can we learn about our Soul and our body’s true needs through the symptoms our chronic illness throws at us? What happens if instead of fighting against illness we give our bodies what they need to feel safe in an unsafe world? How might our world begin to change when we start tending to the deeper needs of our Souls? How might our super-powers begin to emerge when we start tending to the needs of our Soul as dictated by our body?

Waking the Dead

I sang skin back onto my bones like a blanket’s warm embrace.

Enfolding in acceptance all that I am.

A dream within a dream of much more than simple acceptance.

A celebration really,

where a blanket becomes a robe of the deepest blood red.

Sovereign-earned.

Invoking a blessing of holiness

where that which I formerly condemned is honored as gift.

Where pathology is given a new name signifying magic.

And where illness designates power.

Then I sang a song of amens and hallelujahs!

Copyright Lauri Ann Lumby

Grief

When we are struggling with chronic illness or other debilitating and troublesome symptoms, we are cast into a grieving process. We experience all faces of grief – denial, bargaining, anger, depression, and sorrow as we move in the direction of coming to terms with our symptoms.

For twenty-five years, Lauri Ann Lumby has supported people in all forms of grieving. If you are in need of support in grieving your diagnosis (of often lack thereof), please reach out for an appointment.

Learn more HERE