When I developed a severe headache and neck pain after breakfast on June 30 last year, I didn’t think anything was out of the ordinary. I have fibromyalgia and chronic Lyme so unexpected symptoms are not unusual for me. I popped some over-the-counter pain killers and settled onto the sofa for a Netflix marathon, figuring it would pass.
Little did I know I’d be stuck alternating between that sofa and my bed for the next 7+ months. I’d wake up each morning feeling fine, but within an hour or so of being vertical, I’d have to lie down because the headache would return.
It took more than two months, three neurologists, five MRIs and a three-day cisternogram to finally figure out the cause of my orthostatic headaches and neck pain: I had a spontaneous cerebrospinal fluid (CSF) leak.
My diagnosis was only step one of the process. In total, I was out of work and absent from my role here at National Pain Report and on my blog, Fed Up with Fatigue, for more than nine months as I tried to find a doctor who could finally plug that tiny, life-sucking leak.
Even though I’ve been sick for years, I’d never been bedbound. These past few months gave me a whole new level of compassion for those who are confined to bed by chronic illness. Here are a few of the lessons I learned from nine months of lying flat.
Lesson #1: Work isn’t everything
My work has always been a large part of my identity because it’s the one area of my life where I’ve excelled. But what happens when you’re stripped of your work and all that is left is you?
During the first few months of the leak, I was desperate to get back to work. I didn’t know what to do with myself, and quite frankly, having that much time to lie around and think made me pretty anxious. I didn’t want to deal with all of the thoughts and emotions I’d avoided for 40+ years by throwing myself into my jobs.
But as the months passed, I became less defined by my role as a reporter and blogger. I realized my worth as a person is not tied to my ability to win writing awards or have my editors praise my latest article. I am perfectly ok just as I am, whether I pay taxes as an employee or not.
We can still have purpose in life even if we aren’t able to give back to society through employment.
Lesson #2: Always do your own research
I have a friend who’s criticized me because I spend so much time online researching my chronic medical conditions. She says I should just let my doctors do their jobs. Of course, she’s relatively healthy and doesn’t have a clue about how dysfunctional our medical system really is.
The reality is if I had “let my doctors do their jobs,” I would still be in bed and likely filing for disability right now.
I diagnosed my CSF leak using Dr. Google weeks before my doctors did. It took me one afternoon of online research to find out there are only three causes of orthostatic headaches, and two of those could be ruled out in my case.
But since spontaneous CSF leaks are rare, my doctors weren’t convinced of my self-diagnosis. I found that I constantly had to educate them about CSF leaks and my treatment.
I think the average healthy person gives too much credit to medical doctors. The truth is they don’t have all the answers, and most are too overworked and stressed out to take the time to figure out medical mysteries. I have yet to meet a real-life Dr. House like the one portrayed on TV.
The bottom line is if I hadn’t dug into the CSF leak research online myself and aggressively advocated for my care, I’m certain I would still be bedbound today.
Lesson #3: Rest is healing
After my fibromyalgia diagnosis in 2014, I fully embraced the warrior mindset. If something really needed to get done around the house or for work, I would push myself through it even if it meant extra pain and fatigue after the fact.
I initially tried that same strategy when dealing with the CSF leak with excruciating results. The more I pushed to stay upright, the more intense the headache would become until I was completely debilitated.
It wasn’t long before I realized it was easier to prevent the headaches by lying down than it was to get rid of them after they’d started. Over time, I came to a place of surrender. This was my situation. I couldn’t change it. I couldn’t speed it up. I just had to live in the moment and hope for the best.
There was a huge blessing that came with seven months of lying flat. Spending all that time resting was extremely healing for my body. My Lyme/fibromyalgia symptoms are better now than they were pre-CSF leak because I finally surrendered the need to get things done, and just let my body rest.
Lesson #4: It’s ok to ask for help
This was probably the hardest lesson of all. Using a common southern expression, I would rather bust a gut than ask anyone for anything.
But the CSF leak forced me to set aside my dogged independence. I had limited time on my feet each day so that meant I often had to rely on my husband to do the grocery shopping and household chores.
For two weeks after my third and final blood patch to repair the leak, he basically had to do everything because I was on bed rest except to use the restroom, shower or eat. Bending and lifting anything more than a gallon of milk were prohibited.
I cringed every time I had to ask my husband to put the clothes in the dryer or bring me a drink. I hated the role of patient but it did get easier with practice.
Most of us with fibromyalgia or chronic Lyme are can-do kind of people. Unfortunately, our diehard independence can be detrimental for our health. When we push beyond our capabilities, we end up paying the price with increased pain and fatigue.
Like I mentioned above, it’s easier to avoid a flare than to mitigate it once it’s occurred. We have to pace ourselves, and part of that involves asking for help sometimes. It’s ok to admit you can’t do it all. Even warriors get help from their brethren on the battlefield.
Lesson #5: This, too, shall pass
Life becomes pretty small when you’re confined to bed 22 hours a day. I had a lot of dark moments over those seven months. At first, I was scared the doctors wouldn’t find the leak because the testing is so unreliable.
Then, the first two blood patch procedures to plug the leak failed.
I sunk into a funk and started to wonder if I was going to spend the rest of my life in bed. I went to that place over and over in my mind until one day I realized that would never happen to me because I wouldn’t allow it!
I would do whatever I needed to do to get better. If that meant flying across the country to California to see the best CSF leak specialist in the world, I would do that, somehow, someway.
This CSF leak was just another pothole in my life. I would get around it, eventually. I found peace when I reminded myself of the ebb and flow of life, how nothing is constant, everything changes, and how this, too, shall pass.