A Quart Low: Life with a Hidden Disability

Your life can change in an instant. You may not immediately realize the breadth of the change or the full range of its implications, but you’ll always remember when the change happened.

Mine changed one morning on a beautiful mountain trail. It was August 2003.

I fell. Hard.

And as a result, my brain no longer floats properly.

That fateful fall – coupled with an unknown pre-existing neurological defect – led to tiny perforations in my spinal column, allowing my cerebral spinal fluid (CSF) to leak out a tad faster than my body can regenerate it. With insufficient CSF, my brain settles in my cranium, putting pressure on various nerves. The medical term: spontaneous intracranial hypotension (SIH).

My snarky term when symptoms are bad: I’m a quart low.

It’s a hidden disability. Looking at me, you’d never know.

Yet this condition has changed my life in profound ways. There are the myriad internal physical symptoms, and then there are unexpected emotional ones. I am a different person now; someone I often don’t like and would rather not hang out with. Someone who sleeps too much, can be short-tempered and cranky, needs a daily nap, and suddenly has low tolerance for loud noises, inconsiderate people, incessant chatter, and typically stressful situations such as traffic and office environments.

Ugh. I’ve learned to compensate so that no one knows unless I tell them. Even then, they can’t really understand because it’s all going on inside me. Mostly, I bite my tongue and hide my discomfort.

And, for extra challenge and an element of surprise, my symptoms wax and wane. I never know how I’m going to feel from one day to the next. If I’m experiencing a spate of days with light symptoms, I don’t know how long that might last. Needless to say, I avoid making long-term plans.

The underlying congenital condition that causes my woes today (spina bifida occulta) wasn’t an issue when I was a child, beyond vague memories of the occasional “migraine” headache that I seemed to outgrow, slight scoliosis, and the patch of fine hair that grows on the small of my back, at the base of my spine.

For years after my diagnosis of SIH in 2004 I refused to even consider myself as having a disability. I always hoped I would spontaneously heal and return to normal. While that did happen a couple times in the early years, another trip, fall, or accidental hyperextension of my spine would create a new leak. Eventually, the leaks and their symptoms became chronic. I had to admit that I likely never will return to my old normal, that this is my new normal. I came “out” as disabled a couple years ago. It makes cancelling plans at the last minute much easier.

dogs on snowy forest road
Making first tracks just after sunrise, half moon high in the sky. Running in the forest keeps me sane, making me feel a little disabled while I’m out there.

It All Started So Innocently

I’m running along a single-track dirt trail high in the Cascade Mountains of Washington state, my boyfriend Mike and my two Alaskan Malamutes, Maia and Meadow, keeping me company. It’s the last weekend of August 2003.

Mike and I volunteered to remove trail markings – flagging – while following and monitoring the last place runners over the last 20 miles of an ultra-distance race, a hundred-miler called the Cascade Crest Classic. It’s mid-day, sunny and warm and the views we’re treated to along the way have us mesmerized – sharp mountain peaks skirted in dense evergreen forests, lakes, streams, and in the distance, snow-capped Mount Rainier floating above every other landmark in a blue sky that stretches forever.

As we steadily move along the trail, untying flagging from tree branches and shrubs, we engage in our usual, easy banter; we’ve been together eleven years and we’ve spent countless hours together running trails. We’ve done this job before and come back each year because of the course’s beauty, and because we get to cover 20 miles at a relaxing pace with my dogs while enjoying the food and beverages provided the runners at aid stations every five or so miles – less for us to carry. Sometimes we get to play a role in urging a very tired, exhausted runner at the back of pack who’s facing a time cut-off at the next aid station and might be pulled from the race oh-so-close-to-the-finish to keep moving, one foot in front of the other, pushing them gently toward and across the magical finish line.

We listen to the birds and watch the dogs trot along the trail until they catch a scent and follow it a few feet off trail before loping to catch and pass us to resume the lead. I’m 46 and this is my nirvana, running trails with the people I love and consider my family – Mike and the girls, and more broadly, the trail running community and the people who support them at races.

Following the girls, sharing funny anecdotes with Mike while running just a few feet in front of him, I suddenly catch the toe of my right foot as my left foot is swinging forward; my upper body uses that momentum to try to fly forward while my right foot keeps me tethered to the ground, causing me to hit the ground hard without time for my hands to break my fall. I feel my spine hyperextend just before I hit the dirt, first with my chest, then the side of my head. The wind is knocked out of my lungs and it seems like forever before I can inhale. I don’t move; I’m doing a quick mental tally of limbs and joints, making sure nothing’s broken or seriously tweaked.

“You okay?” Mike asks with alarm while the girls come back to sniff and kiss me; they don’t often see me laying on the ground and are concerned. Trail running involves falling, especially in the mountains of the Pacific Northwest where there are rocks and roots everywhere just waiting to catch your toe or twist your ankle. Mike and I have watched each other take spills over the years, and usually it’s our ego suffering the worst damage, but he can tell this fall was harder than most.

“I’m fine,” I say even though I’m not totally convinced. I get up, dust myself off, and am thankful it wasn’t worse – no broken bones or skin, no stretched or torn tendons to interfere with being able to finish the job of sweeping the trail. We’re a long way from help and I don’t want to become a burden to Mike or the race organization. I start walking, slowly and carefully to make sure everything’s working, Mike following me with concern until I start jogging again. I’m sore – right upper arm, right hip and thigh which took the brunt of the impact – but it’s tolerable and feels better the more I move. Within minutes we fall back into our usual trail-sweeping rhythm of running several yards, stopping to pull ribbons, running some more and pulling more ribbons while smiling at the girls’ antics and entertaining each other with stories and jokes as we keep the last place runner in sight without getting annoyingly close.

sunlight through trees in winter
Early sun breaking through the trees, always good medicine.

Something’s Not Right

By mid-September I’ve got a constant headache that will not go away or respond to ibuprofen. Otherwise I feel fine and keep running almost daily.

Soon I begin noticing that when running down steep trails my headache is much worse, almost debilitating with each forceful footfall as if my brain will explode through my scull right behind my eyes. I can hardly carry on a conversation – with my dogs or whomever I’m running with – until the terrain levels or we go uphill and the pressure lessens. I go on vacation to a dude ranch in British Columbia, a place my dogs and I have enjoyed many times previously. This trip, though, every time my horse trots, I think my scull will break, the pressure inside so intense, like my brain is a bowling ball knocking against the inside of my scull with every bounce in the saddle.

The headaches never go away, even when going about normal daily routines; they’re chronic. Except when I sleep; suddenly I’m sleeping really soundly and dreaming, a lot.

In mid-September I make an appointment to see a doctor and am seen by a P.A. I try to describe my symptoms – intense pressure behind my eyes and nose, worse when I run and especially run downhill. He suspects sinus infection, prescribes an antibiotic and instructs me to call if I’m not better in two weeks.

I take the antibiotic. I don’t feel better. In fact, the headaches get worse. Despite the horrible pain when I run – and oh god, the downhills are so bad that I walk them now – I keep running because that’s the thing that keeps me sane. After two weeks I call the doctor and this time I see my primary care physician. It’s late September. She listens to my symptoms and refers me to a neurologist. I call to make that appointment; the earliest I can get in is early December.

Searching for Answers

My road to diagnosis is long and fraught, in large part because this condition is rare and difficult to diagnose. Back in 2003, few physicians had any experience with diagnosing it, and that’s only slightly better today although recently a Spinal CSF Leak Foundation has been created to help patients and promote learning and recognition of this rare condition within the medical community. And while there are treatments (often surgical) that can help many with this condition, my exceedingly rare tethered spinal cord makes them too risky for me. So, by necessity I’ve learned to adapt and live with my disability.

I keep running, even when it hurts my head, as is often the case. I keep doing the things that bring me joy, always knowing that at some point my condition could get much worse. I live for today, which explains a lot of my life choices.

And I share my experience, in case it might help others. The following article was published by the Mayo Clinic in a series of columns written by patients or caregivers with the goal of helping health care professionals be more aware and understanding of their patients’ experiences. (I learned a few weeks ago that my piece will be included in an anthology of articles from 2019.)

dog in snow with view
Dogs, running, forest, vistas…all good medicine.

My Leaky Life: Learning to Live with Chronic CSF Leaks

(Published in the Mayo Clinic/Inspire Series: Experts by Experience column, April 2019)

My dogs and I prepare to head out for a walk in the forest. They’re excited, which makes it challenging for me to put their visibility vests on them. My anger instantly swells out of proportion. I growl, move abruptly. At the instant I’m short-tempered with them, I simultaneously know it and back down, asking myself, “Who the hell are you and what did you do with Rebecca?”

This ability to analyze my behavior in the moment is the result of too much practice. Over the past fifteen years, I’ve had to learn to control a temper I never used to have, a temper that’s the by-product of a condition that for most of my life I also didn’t know I had.

Fighting for a Diagnosis. My twin birth defects of spina bifida occulta and a tethered spinal cord were discovered following a hard fall while running trails in 2003. It took nine months, three neurologists, a spinal tap, two MRIs, and dogged persistence on my part to receive an accurate diagnosis for my horrible, months-long headaches, tinnitus, dizziness, fatigue, and brain fog: spontaneous intracranial hypotension caused by leakage of cerebral spinal fluid (CSF).

Because I kept running when I could, the first two neurologists didn’t believe my headaches were bad enough to fit the CSF leak diagnosis; most patients can’t tolerate being upright, let alone run. It was the third neurologist – a former endurance trail runner himself – who understood that running was my coping mechanism and that as an ultra-distance trail runner, I had high pain tolerance.

Coping. After many cycles of CSF leaks – which I jokingly refer to as being a quart low – I can match the degree of the leak to personality changes that weren’t initially obvious to me. My emotional reactions were something new. I was easily irritated, to a greater degree and much more quickly, by people I knew as well as total strangers, by loud noises, traffic, computer glitches … basically, by normal life. Where before that fall in 2003 I was upbeat, with boundless energy for friends, work, activities, even chores, I now felt unmotivated and easily angered.

I’ve learned to anticipate the bad times as well as situations (and people) that are triggers. If unable to avoid them altogether, I stop my reaction pre- or mid-outburst with a mental “Chill!” that reminds me that the problem is me, not them. But it makes “fitting in” with cultural norms regarding work schedules and socializing challenging. I berate myself for not getting enough done, for sleeping too much, avoiding people, for … not being the me I was before CSF leaks. Cutting myself enough slack to rest and heal with each new leak is tough.

I keep running, always with my dogs (my emotional therapists). The pounding is sometimes excruciating inside my head, but I run – gently, less far, no longer racing – because it helps me cope. That runner’s high and sense of well-being are worth the extra pain. Running trails in the forest among trees, streams, wildflowers and wildlife, moving – no matter how slowly – keeps me sane. In those moments, I don’t feel disabled; I don’t think about pain. My creativity flows and I feel normal for a while.

Lifestyle Changes. Almost unconsciously, I’ve crafted a lifestyle that accommodates my condition, one that puzzles family and friends. Abandoning a twenty-year legal career, in 2005 I left Seattle to live on five acres in rural Idaho. I knew I needed space and quiet to escape having to cope with too-close neighbors or typical urban cacophony.

I left cushy jobs with good benefits because dealing with co-workers, work schedules, and commuting was almost unbearable. I’m now self-employed, working from home, in charge of my own schedule, which reflects how I feel. Most days, I nap when “normal” people are taking a lunch break, which allows my CSF levels to recoup. Rest and caffeine are the only treatment options that help. I shun most social situations, especially big, noisy gatherings.

Today I’m honest and open about my condition, the chronic pain and its emotional impacts. I’m more Stoic: taking each day as it comes, grateful for its gifts, not dwelling on the former “healthy” me. My dogs help defuse the stress of chronic pain while joining me in a lifestyle that accommodates my disability and makes me happy.

I wish a medical professional had warned me what was ahead emotionally, that I hadn’t had to figure this all out on my own. Discovering the Spinal CSF Leak Foundation and the Inspire community of fellow CSF leakers this past year has been a godsend. Sharing stories, lessons, and (most of all) hope has helped me know that I’m not alone.


tracks on snowy road
I felt giddy with wellbeing during this run with my dogs, the first instance in a long, long time.

Well Hello! You’re Back!

The past couple of days I’ve enjoyed this out-of-body experience of noting that my old self, my pre-diagnosis “normal” personality, has made a reappearance.

It’s so strange, like I’m one Rebecca watching the other Rebecca. With that same ability to step back and recognize my evil-twin cranky persona in the moment she’s being short-tempered that I described in the Mayo piece, I can see – and feel – that my non-leaking happy personality has returned. I haven’t seen this Rebecca in ages.

I’m saying sweet nothings to my dogs, even when they do something that, when I’m dwelling in the darkness of my worst symptoms, annoys me and makes me sometimes (to my everlasting shame) bark at them. I feel like Mr. Rogers has come for a visit, sharing his warmth and optimism. It’s a wonderful day in our neighborhood.

I’m getting work and chores done without procrastinating or waiting for energy and motivation to return. Even the legal cases I’m currently involved in can’t try my patience (and that’s saying a lot).

I’m feeling creative. I ordered a beginner’s kit of colored pencils and pastels so I can pursue something I’ve wanted to try for years: drawing.

I writing again.

I’d almost forgotten who this Rebecca is.

I’d feared she might never reappear.

It’s so fun to have her back.

I have no idea how long she’ll be here, but every day she is, is a gift.

Live your best life now. Today. Every day. Don’t wait.

[Big thank you to Susan Tasaki, friend and Senior Editor at Bark magazine, for editing the Mayo/Inspire piece for me. Susan, you rock; thanks for always making me sound smarter than I am.]

Photos: all taken the morning of January 17, 2020 while running on a freshly-groomed Forest Service road with my dogs, grateful for perfect conditions, both in weather and in body.

36 thoughts on “A Quart Low: Life with a Hidden Disability”

  1. “I suddenly catch the toe of my right foot as my left foot is swinging forward; my upper body uses that momentum to try to fly forward while my right foot keeps me tethered to the ground, causing me to hit the ground hard without time for my hands to break my fall.” I know. 😦

    “I keep running, even when it hurts my head, as is often the case. I keep doing the things that bring me joy, always knowing that at some point my condition could get much worse. I live for today, which explains a lot of my life choices.” Maybe the essence of wisdom?

    I’m siting here weeping. ❤

    Liked by 2 people

    1. Ah, no tears for me, Martha; I’m good!
      Weirdly, I think I’ve always been prepared for something like this. All my life I’ve observed people putting off living until retirement or “some day” only to be diagnosed with heart disease, cancer, or some other life-altering condition that completely screwed with their plans. Since about age 35 I’ve tried to adopt the Stoic approach of living each day fully, as if it’s your last, grateful for the next one, regardless of challenges. That meant working less (and thus having less) and playing more. Sure, I have my dark moments when symptoms are bad, but then my dogs quickly remind me how to be happy in the moment and quit worrying about the future 🙂

      Liked by 1 person

      1. Not really tears for you. More like I get it. ❤ I learned that lesson as a kid watching my dad's determination to be fully alive as he faced the inevitability of multiple sclerosis back in those days. That lesson pretty determined my whole life. I never worked toward any abstract idea of "success." I found a job that was meaningful in the moment and still supported me and led to my current frugal but (IMO) perfect life. I didn't plan anything, really, just kind of determined my direction based on the imperatives of the time as I saw them. But the invisible disability thing, I also get that very well.


        Liked by 1 person

      2. I think we drew similar conclusions from watching those around us who were older, including your father in your case. (So sorry to learn he had that terrible disease; I can only imagine what it was like for you to watch it take its toll on him.) For me, “success” after my parents’ divorce no longer meant marriage, big income, prestigious job, fancy house and lots of grownup toys. Instead it meant living lean and independently, being happy in the moment, and fulfilled with work and play. And dogs. Always dogs 🙂

        Liked by 1 person

      3. And yes, your mood disorder is another hidden “disability.” I like your “the hand I’ve been dealt” approach, it’s ultimately the one I adopted. Whining doesn’t help!


  2. I’ve lost quite a few things I used to be able to do and things I’d wanted to do but now can’t. Stoicism is the only response that allows you to remain happy. Despair is what crushes life.

    I’ve had to adapt. Extra padding in shoes, walking where I would have run, softer trail surfaces, walking staff when practical. Avoiding steep downhills when humanly possible.

    I’ve had to sacrifice speed, distance and the ability to carry much of a load. But I gained something. I don’t think I was nearly as aware of the natural world as I am now. I spend as much time watching the bees and flowers and animals as I do walking. I savor the sun on my skin and the sound of the wind in the leaves.

    Very often for something lost there is an alternative perspective that allows us to move on.

    Liked by 2 people

    1. Yes. You get it, Fred. Thanks.
      While I always expected aging would eventually slow me down, this condition had me facing those changes and losses much sooner than I anticipated.
      But yes, when I’m out in nature now, my slower pace allows me to see and hear so much more. Where before I would have kept moving at a steady pace (because I was always training for some race), now I happily stop to look, listen, take some photos of whatever catches my attention before continuing on. An entirely different approach and perspective. By losing some abilities I’ve compensated and gained others. It’s all good.
      If my father were still alive, he’d be reminding me that living with any new challenge is better than the alternative (death).
      We just keep on keepin’ on, eh?

      Liked by 1 person

      1. I am a part of all that I have met;
        Yet all experience is an arch wherethro’
        Gleams that untravell’d world whose margin fades
        For ever and forever when I move.
        How dull it is to pause, to make an end,
        To rust unburnish’d, not to shine in use!
        As tho’ to breathe were life! Life piled on life
        Were all too little, and of one to me
        Little remains: but every hour is saved
        From that eternal silence, something more,
        A bringer of new things; and vile it were
        For some three suns to store and hoard myself,
        And this gray spirit yearning in desire
        To follow knowledge like a sinking star,
        Beyond the utmost bound of human thought.

        Tennyson, Ulysees

        Liked by 1 person

  3. “I am a different person now; someone I often don’t like and would rather not hang out with. Someone who sleeps too much, can be short-tempered and cranky, needs a daily nap, and suddenly has low tolerance for loud noises, inconsiderate people, incessant chatter, and typically stressful situations such as traffic and office environments.”

    In addition to your leaky brain, this may also be related to traumatic brain injury. With the exception of the need for sleep, I can say all the things you wrote down in that paragraph since I was hit by a car in 1995. Not sure there’s anything you can do about it, but it all seemed so familiar, I thought I’d mention it.

    Liked by 2 people

    1. From what I’ve read, the symptoms, especially mood changes, can be very similar. Thanks for pointing that out, Jeff.
      With traumatic brain injury, through, often the insult of the injury diminishes along with the physical and emotional symptoms associated with it as the brain heals, right? Was that your experience? Or were you left with long-term or permanent changes/symptoms?
      I don’t believe, on that initial fall that started all this, that I hit my head hard enough to cause a brain injury. And at that moment, my brain was cushioned normally; the leaking started after the fall, slowly, so slowly that I didn’t notice a persistent postural headache until two weeks later. It took months and lots of tests to finally conclude it’s my tethered spinal cord that causes my dura to tear and allow CSF to slowly leak out.
      I do wish I’d read about traumatic brain injury and mood changes earlier in my own journey; many things would have made so much more sense to me with that knowledge, and I might have managed a few things differently. Oh well.
      I do worry, especially when my CSF levels are particularly low and I’m running, whether I’m causing persistent low-grade traumatic injury to my brain with all the bouncing since it’s not cushioned as it should be. But then, as soon as I start running, I feel so much better emotionally – good ol’ endorphins and runner’s high – that I stop worrying 🙂

      Liked by 1 person

  4. After reading a blog post by a woman who has permanent hearing loss from a TBI, I started researching the long term effects of TBI. Here’s the list that describes me to a tee:
    Difficulty with social relationships
    Difficulty making and keeping personal and professional relationships
    Difficulty being part of social activities
    Difficulty taking part in recreational or leisure activities
    Diplopia (weakness of eye muscles that causes double vision)
    Decrease or loss of hearing
    Also, my Tourette Syndrome, gone since my teenage years, returned. My jaw dropped when I read this. My wife and I always wondered if my bicycle accident caused a permanent change in my personality. This list helped us agree-yes.


    1. Wow. Seeing that list, I count myself lucky I didn’t sustain a head injury. Sorry you’ve experienced all that. Makes my worst mood complaint – lack of patience/quickness to anger when I’m really low of CSF – pretty trivial. Honestly, I think many of the emotional/interpersonal changes I notice with low CSF come down to a sharpening of my already-existing introvert traits (sensitivity to noise, disdain for chit chat, need for lots of alone time, etc.).

      Liked by 1 person

      1. Prior to the injury, I registered as an extrovert on the Myers-Briggs. Now I’m red-lining on introversion. If I missed this in your essay, I apologize, how do you get your level back up? Do they top you off?


      2. Early in the process of diagnosing and possibly treating my condition, I was given two epidural blood patches. The idea is that the blood they inject into your spinal column will plug a leak, keeping CSF in and giving your dura a chance to eventually heal the leak on its own. In my case, after each patch, the results were immediate: I got off the anesthesiologist’s table with headache gone, feeling awesome. But after 3-4 days, the symptoms would slowly return. It was while the anesthesiologist – a really nice guy – was giving me the second patch that I mentioned my suspicion that I had a tethered spinal cord. He got real quiet. He asked if my neurologist had ordered a spinal MRI. I said no. After removing the needle from my spine, and after I left, the anesthesiologist wrote to the neurologist, saying a lower-spine MRI should be done. He may have seen a huge malpractice claim in his future, poor man.
        The MRI showed the tethered cord. They should never have been sticking needles in my low spine. In normal people, the lower spinal cord is called the cauda equina – horse’s tail – because it splits into several nerve endings that float freely within the lower spinal column. That tail end of nerves can float and move away from the needle delivering the blood path. But, not so with a tethered cord. I feel lucky no nerve damage occurred. So, probably no more blood patches in my future. Confirming the tethered cord also explained why I was experiencing repeat tears; any sudden hyperextension of my back, or hard fall, especially with a twist, could cause a tear because my spinal cord didn’t move inside my spine like it should. I think aging has increased the likelihood of tears, that the dura around my spinal cord is thinning or weakening.
        So I’m left with only two options to increase my CSF levels: caffeine (turns out it stimulates the production of CSF), and bed rest. The latter because the headaches are orthostatic, or positional: worse when upright, gone (or mostly gone) when prone. Which makes sense when you realize they’re caused by the brain not floating properly in the scull when CSF levels are low. And rest (my daily naps) gives my body a chance to replenish CSF levels, which is does constantly, but with a new leak, new production can’t always keep up with what’s leaking out through a hole or tear until slowly, over time, the leak heals and production is sufficient.
        I’m known as the woman who always has a diet Dr. Pepper with her. I’ve never like coffee or tea, so caffeinated pop is my caffeine delivery system. I drink about a liter of pop a day.
        More than you wanted/needed to know, I’m sure, Jeff! But I offer the explanation in case there’s someone else out there reading this with similar symptoms yet to be diagnosed. It’s an incredibly difficult condition to accurately diagnose, let alone treat, but once you get the diagnosis, so much makes sense and you no longer feel crazy or unheard.


      3. Wow. It’s a cautionary tale. The amount of damage we can do to ourselves is incalculable. Over the past 2 weeks, I’ve had my feet slip out from under me and I’ve landed flat on my back 4 times. Three while I was skating and again yesterday out running after an ice storm. Each time, I’ve reminded myself how lucky I was to not get injured. Yes, there’s risk to partaking in activities, but I think I’v e unnecessarily pushed my luck by messing around on ice. I wish you many headache-free days.

        Liked by 1 person

  5. This is one of those posts that I carry with me. It made me think, it made me cry and it makes me thankful for what I have. You provide a perspective whose lessons are abundant.

    I send you hugs and love Rebecca. And thank you, that too.

    Liked by 1 person

    1. Aww, thank you! If one person reads my musings and comes away living their own life a little more boldly and in the present, I’m a happy woman.
      Thank you for the hugs. They’re always needed, appreciated and welcomed. I might even have something to say about those in a future post. Thank you for the inspiration!
      Hugs back to you 🙂

      Liked by 1 person

      1. You inspire ME.
        The way you paint the moments of your life, I see them, like . . I really see them.
        It’s how I fell in love with the written word, once upon a time. From the pens of folks who lived their tale so very boldly.


  6. Oh my. What a nasty thing to have happened to you. I can’t imagine how frustrating it must have been to have your mood go sour and not be able to do anything about it. I’m very grateful that you are, at the present, enjoying an uptick in your condition. My thoughts are with you and my wish that you never get a quart low again. I’ll raise a Dr. Pepper in your behalf, but not diet, because, yuck.

    Liked by 1 person

  7. This was a really interesting read. I’m so sorry something like that happened to you. I have a chronic illness myself–mine is Chronic Fatigue Syndrome which is also often abbreviated to CFS–and although it’s a different thing I relate to a lot of what you have written. In particularly the sudden onset, the lifestyle changes, the adjustments to how I now make plans and participate in activities (although when I was very ill this usually meant not making any plans and not participating in any activities).

    Liked by 1 person

    1. I’m sorry you can relate, Lucy. I think the biggest challenges for me have been learning to go easy on myself, to not expect my per-onset levels of activity, and then eventually admitting I’ll probably never return to that old self, that this is my new “me” and I might as well learn to love and accept her with all her limits. I hope you are able to find ways to accommodate and live with your CFS that allow your best you to thrive. Resiliency is the goal, eh?

      Liked by 1 person

  8. So much of what you have described sounds familiar with me but for different reasons. How wonderful that you seem to have found balance and lead a beautiful life. I hope that the old you visits often and that you can accomplish much together.

    Liked by 1 person

    1. Thank you for understanding; sorry that you do, but…well, you know what I mean. Sometimes the ebbs and flows of these conditions makes us appreciate life during the “good” days all the more.
      By the way, as a late reply to you comment to an earlier post about my dogs camp: it is awesome, and you and Bitey Dog should consider it (as long as Bitey Dog agrees to no biting while at camp 😉


  9. 26 years for me since a 1 story fall resulted in CSF Leak and some other stuff, TBI included. Lots of brain fog between the two. I didn’t suspect a leak until 24 years in. 12 years in I found a naturopathic procedure that actually fixed the worst pain. the CSF Leak pain remained and like I said it took another 12 years to find that.
    It destroyed my computer programming career, so I started playing music as it helped escape the pain, i can stand longer than sit, and it was easier to ‘act’ normal. Some time after finding CSF Leaks I started a practice of laying on the bed with my head dangling off, and damned if I didn’t’ find that causes my symptoms to back down much faster than laying down alone.

    It’s constant. the tinnitus which i call “Brain noise” for it just doesn’t seem related to my ears, sounds like jets on the tarmac, and the sound and feel of it greet me every morning. Just want to put that in and say how much I enjoyed reading your article. You’re quite an author. I started a blog too, but my mind is sometimes too confused to post to it.


    Liked by 1 person

    1. Harvey, I’m so sorry you’re on a similar journey with a hidden disability, one with a history even longer than my own. Most medical professionals have no clue and can’t diagnose leaks, which only adds to our frustration and struggle.

      I get it. Oh, do I get it. You’re not crazy, and you’re not alone. Who knows? It may be possible to fix your leak. Worth investigating.

      I’ve found excellent advice on the Inspire.com group for spinal CSF leakers. There may be a similar group there for cranial CSF leakers (I’ve read a couple of your blog posts which make me think your leak could be either or both). Mostly, it’s a great resource for finding medical pros who are experienced with CSF leaks and will take you seriously. Some will review your images for free and let you know if they think they can help. I urge you to join one or both groups, post questions, read others’ posts and the responses to them. There are two or three moderators who have leaks and offer great advice when questions are posed.

      I’m going to try your hanging-the-head-off-the-edge-of-the-bed trick, see if that help my symptoms.

      Here’s the link: https://www.inspire.com/groups/spinal-csf-leak/

      Liked by 1 person

      1. HI Rebecca, I really appreciate your response. Your blog is wonderful. I’m on a really good facebook group, very busy, but Ill sign on to inspire too. 5k members a lot of healed and sealed folks to various extents. Id love to know what the effect of the head-hanging thing is for you if you tried it. You know I was alone with this for 24 years. Talking to others like you is bringing me back, but man i have more clear hindsight on the failures of health care in the past and it’s not encouraging. the new knowledge of it is, but were still a statistically a small number. There is a bigger population that known. Sorry I didn’t see your comment until today. My blog is sloppy and pictureless so i always plan to upgrade but never get to it. i have to work too hard.

        Liked by 1 person

  10. Hi there! I just discovered your blog by searching WordPress for posts with CSF leak mentioned (and there aren’t many!) I also have a spinal CSF leak and just started writing about it on my blog after a long hiatus. I relate with most everything you mentioned in this post! But the hardest part for me has been not being able to take care of my 2-year old daughter; I have 24/7 grandparental help. Add that to noise and light sensitivity and I can barely leave my room. 😕 I’ve had two blood patches that failed and I’ll be going to Mayo sometime next year for expert care.

    Thank you for writing such an informative post about CSF leaks! I look forward to read more of your blog!

    Liked by 1 person

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