5 Lessons I’ve Learned from 7 Months in Bed

5 Lessons I’ve Learned from 7 Months in Bed

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.

Donna Gregory Burch

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.

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Authored by: Donna Gregory Burch

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Lynne Hall

Sick of bloggers and anyone with an opionion, who is not. A CCP.
Like we need more opions.
We need facts. Deadlines prior to them expiring.
We need real facts.
Like if 15 million chronic pain patients are out there and 19 choose sucide as a way out of pain. Where is it on the news.

If the case os they are saving us. Then from what? Most of us are either patents or Grandparents, that have been bedridden so the war on drugs can be won.
We hace lost the thing that mattered the most to us. OUR FAMILIES.
AND TRUMP DECLARES VICTORY IN ALTANTA!
BS! Easy picking, when you target legitimate doctors trying to help, but running scared.
If sucide from legal opoids has effected so many doctors where are they? And why are doctors against the CDC guidelines.
I’m forced into pain management. I came prepared with a brief case dating back to the 3rd grade.
I was told they didn’t want to look at it. Meanwhile I see a PA who goes and gets the doctor I’ve never seen to sign mu my scripts.
Now I’ve been yold I must subject myself to epidural steriod spinal shots to continue getting any mefs at all.
I left 2 surgeons who had to choose treating patients their way or lose hospital privileges.

Thank you for sharing, Donna! Hugs from a fellow leaker 💜

Gail

Donna,

A million and one thanks to you for your enlightening words. In my personal pain journey, I have had to learn many lessons as well, most of them kicking and screaming along the way. However, I needed reminding of #5; this too shall pass. After all, my mother always said patience is a virtue and I needed a good, healthy dose.

Thank you again for putting me to rights. I will continue to diligently and patiently pursue my medical health goals with a renewed positive mental vigor. God bless.

Tammy Newell

Donna,

I can’t thank you enough for your informative article. I’ve been dealing with Chronic Pain issues for over 20 years. Having had my first Cervical Innerbody Fusion done at C4-5 or was it C5-6 .. ?? Back in April of 1993 .. over 26 years ago. Since that date I’ve had a total of seven surgeries on my spine, six cervical & one lumbar. The last surgery was done in mid 2012. Needless to say I have several documented painful issues going on in my spine. Which put me in contract with a Pain Mgmt Physician starting about 20 years ago. Social Security Disability was granted to me at approximately the same time. My quality of life during these past 20 years, although not perfect, was very manageable. There were periods of time that I was bed/couch/recliner chair bound, but usually was quite self-sufficient. However, since the Opioid Crisis & forced taper due to OR State Law, my quality of life has dropped drastically. Therefore your article really helped me to look at those five points & not be so hard on myself.
So … I just really wanted to let you know how much I appreciate you sharing this. It really offered me a new perspective as I sit here in my Hospital bed waiting to get better from the latest infection. Thank you so much Donna!

Alouise

I went through a spinal leak caused by the head of anesthesiology at a major hospital in large city. I saw him after a car accident left me with a herniated disk and free floating disc fragment in my spinal canal. The neurologist treating me told me he did not believe in any pain control, but would order a series of 3 steroid injections. I was new to the whole process- so I thought great-I’ll get three injections-no more pain. Went through first injection, then 2 weeks later the 2nd injection was scheduled. It felt different, almost too easy-waited about 20 minutes laying on hospital bed. Doc came in said I was good to go. I walked to closet and bent down to get clothes and the pain that hit my head was so bad I literally thought someone had assaulted me and smashed me in the head. I tried to look behind me and sank to the ground. Long story short…doctor had caused a spinal fluid leak when he injected the steroids. He just kept saying “this has never happened to me-” (me either I thought!) It took 12 blood patches over 3 visits to get the hole sealed permanently. By this time my back was black and blue and so sore it is hard to describe.
This entire experience took months to get the hole to quit leaking and I was getting more and more scared. When I next saw the referring neurologist I said something like
“I went through all this suffering and nightmare” because no one believes in any pain control.
He replied he still didn’t and just because all this happened to me he would not prescribe and pain control.
I ended up having to have surgery because of the free fragment of disc material in my spinal canal. The surgeon gave me 5 days pain control. Total of 40 mg. Doc Told me don’t call and ask for refill-I don’t give them. I had a big surgery and I was in a lot of pain. I was in a brace for 3 months and walked around 😢 crying all the time- it hurt so much. I could not believe I was left like that- I am terrified I might ever need another surgery.

Researcher

Great article! I’m still struggling with the loss of identity ( I started as a 8 yr old) and asking for help can be painful. Very. But I figured out a long time ago it’s easier to not let my pain level reach a 9 than it is to try to get it down from a 9!
It’s Dr.s who started me on my path to chronic pain by “medical mistake” at 22 yrs old. Pain didn’t become unbearable until my 30’s off & on. It’s been “on” fot more than 15 yrs. Drs don’t care, don’t trust you know anything, I’ve diagnosed myself & others as well, & make MANY mistakes that can last a lifetime. Blessings to all whose life has been affected/taken by chronic pain.

The reason you provided (that often it’s better if we work *with* our pain rather than against it–please forgive my paraphrasing.) is at least part of the reason I prefer *not* to use the term “warrior” in reference to myself (I’m also a Buddhist pacifist. War isn’t my thing.) As for myself, I prefer the term (and I hope I’m allowed to write this very mild swear here) Chronic Pain Badass. 🙂

Kristen

Donna,Great to see you back on here! I always enjoyed reading your articles as I found them to be very helpful. I’m sorry for all you have been through these past 7 months! I think advocating for ourselves is important especially these days when many Dr’s just sweep our symptoms under the rug.I have severe back issues and neck and also was diagnosed with Lyme Disease 3 years ago.I also have other Chronic Pain issues including Migraines.I went back to my Dr in Feb because my Migraines had been getting worse than they normally are and my Chronic Neck issues were getting worse as well.I had a Mri on March 1st this year and results showed Cervical Cord Syrinx extending from C6 to T1.The report says comparisons from past MRIs 2011,2015,and 2017 ,in retrospect this may have faintly been present on prior exams but is clearly visualized on todays exam given the better technique.We know our bodies better than anyone including most of our Doctors so I am glad I had the strength not to let this go.Also just this past Monday I had my yearly Mamogram andTuesday my OBGYN called to say I need a needle Biopsy because two suspicious Nodules one being 13 cm in depth! I did look at my MRI report several times to be sure I read that correct and apparently I did.My issue is once again on my report it clearly says these Nodules were probably there on April of 2018 but again with better technology they were clearly visualized.I am besides myself wondering how and why.I had Thyroid Cancer last year and now im afraid that when I have needle biopsy that I will get that dreaded call I got a year ago.I have lost faith and trust with my Drs.I am so happy you were determined to put so much research into your medical mystery and were finally given an answer.I admire your strenghth and determination.I am so happy you got the answers you needed and most importantly that your on the Road to Recovery and feeling better.I wish you all the best and Thank you for sharing all the Lessons you posted.

Mary

Thank you for sharing Donna. I’ve struggled with several physical problems for years now. I had to apply for disability in 2008. And keep getting denied. I’m currently in yet another appeals process. Fibromialgia alone is disabling. Not to mention the arthritis, myalgia, and more. I believe the government doesn’t care for people who can’t work and pay into “their system “. Many people in society behave like same. From my experience with Dr’s, they seem to care less . My treatment and quality of life is not a priority to any of them. All of this only adds to my pain and anguish, and I don’t know where to turn. Aren’t there lawyers who actually defend people like me?

Dorothy Primich

I have an inkling of what you went through. My situation was the opposite. I had Pseudo Tumor Cerebri. I didn’t have the benefit of the internet. I was 30 and had pain in my head. My vision was going and I had tinnitus. Every doctor sent me to another specialist. I finally went to the head of neurology at New York Hospital Cornell Medical Center and after an mri which was clear he finally diagnosed me. I started getting lumbar punctures. This lasted for about five years almost once a month. Back then Lyme was something new that existed solely in Lyme, CT. Looking back I truly believe this was from the Lyme because they could never figure out how it began or ended, which thankfully it did. I know we’ve chatted about the Fibromyalgia and then the Lyme. Years later I had seizures on the left side of my face. It would suddenly seize up. I was an airline gate agent so this was not a good thing at all. I would run into the ladies until it went away. It too disappeared just as suddenly as it had come. It wasn’t until 2017 I finally got diagnosed with chronic Lyme disease. I had gotten sick and tired of going from doctor to doctor and went outside insurance to finally get that definitive diagnosis. So many years of sickness. I know you will do better with your intelligence and resources available today. I wish you good luck and good health.

April McDowell

I have been horizontal for over six months now and can relate to a lot of what you’ve said here. I would add that I’ve learned gratitude… For the people who care for me and who are helping me through this, and for being in a financial situation where I can afford to not work. I’ve also just learned to slow down and relax for the first time in my life. Thank you for your article.

Kris Aaron

“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.”
Absolute truth! Many doctors got into medicine with big plans and high ideals, but the reality of the assembly line parade of too many boring patients with boring issues has worn them down. Plus, the doctors are working for corporations that set their employee rules in stone — violate at your own risk.
For example, they are required to see X number of patients per day — regardless of one patient’s emergency or crisis — and are “graded” by standards including prescriptions written and patient complaints. They are allowed only Y minutes per patient, and expected to refer any interesting cases to specialists rather than investigate possible treatments on their own. Many are forbidden to write ANY opioid prescriptions, thanks to astronomical increases in the cost of malpractice insurance for the corporation.
Being a physician has changed wildly in the last 50 years, and not to the benefit of anyone but their corporate employers. Unless they’re surgeons, their salaries aren’t particularly high and many burn out within their first few years. But there’s no changing careers — not with medical school loans in excess of $500,000 waiting to be paid off.
America’s for-profit health care industry has been a disaster for everyone but investors. Listen to who howls the loudest at the mention of “socialized medicine” and you can bet it’s those raking in the most money off our suffering.

Carole Porter

Donna – So Happy that you are recovering from this debilitating leak! I totally agree and understand your determination in being your own best advocate.

Thank you for sharing the lessons you have learned as I believe this is a fruitful way to view our obstacles in this life even though they traumatize.

Blessings to you Donna.

Carole Porter

Laurie Zubritsky

It’s great to see you back online. Wishing you continued good days. An idea for an article,our insurance won’t cover provigil for her chronic fatigue from fibro (not approved for fibro). With a coupon rite aid charges $70 cvs $750 yes not a typo. 2 issues here, drug not “approved “ and searching for a good coupon. We ended up usin “scriptsave”,talk about needing to do research!