Let's Talk About...Symptoms
Today I'd like to address something that's complicated, varied, and different for every single person with FND...symptoms.
Let's Talk About... Gratitude
July 19, 2023, 13:15
I've been thinking a lot lately about how FND has changed my life. Instead of focusing on all the things it has taken away from me, I'd like to spend a bit of time on the things it has given.
Before this illness arrived, I was a person who "burned the candle at both ends" all the time. I was busy raising a family, putting myself through school, then establishing a career, working, running a household, exercising...you're familiar with how life works. I never really took the time to slow down, to live within the moment, or to breathe. All those years I spent rushing, but not really going anywhere, like a hamster on a wheel. I recall always having difficulty falling asleep because my mind was constantly racing. I paid no notice to the aches and pains developing in my body, the fatigue, and the mental strain of trying to manage life. If I fell ill with a cold or flu, my motto was "I don't have time to be sick.... too much to do!" and would never take the time for any needed rest.
FND has forced me to examine how I live. It's hard for me to admit it, but some days I think this illness can be a bit of a blessing in disguise. (Don't get me wrong, we still have a mutual dislike!) Now a days, I have to listen to my body. That's something I've never done before, so it still feels a bit alien. I have to wake up in the morning and take a moment to see how bad the brain fog is, will I be able to drive today? What's the level of pain? How is this day going to look in regards to getting some chores completed? Am I a miserable grouch? (If so, I have to give my poor hubby fair warning....) I am required to do self examination frequently throughout the day now, because FND symptoms can get better or worse as the hours roll along. It's so unusual for me, to reflect often on how I'm doing. And that point leads me to another thing FND has given me, a better relationship with myself.
No, I don't have a multiple personality disorder! Rather, I'm pointing out how we can all be our own worst enemy, am I right? FND has forced me to examine how I judge myself, and the things I accomplish with more kindness than I'm used to in the past. Being a Type A personality, I would frequently make myself a list a mile long of things that needed to be done, and chastise myself for every one I failed to complete. People I worked with would be chatting about the latest TV show they were hooked on, sharing their favorite bits of each episode...I never sat down to watch TV, or read, or paint, or do any of the things that can bring a bit of joy to life. If I only managed 4 hours of sleep and still made it to work the next day, got the kids off to school, meal prepped, and did the laundry it was a triumph to be celebrated! "Look at how much I accomplished on so little rest....I'm a machine!" It was like a badge of honor, being exhausted and busy all the time. How wrong I was. If a friend or my kids were stressed or ill, I would insist on them resting, having some time to relax, I would make my homemade chicken soup and put them to bed with a fuzzy blanket. I refused to take my own advise. I treated myself with cruelty for many years, and worse I treated this body that I inhabit with disregard.
I'm not saying that I brought this illness down upon myself. I'll let the scientists and medical researchers come up with a cause for FND. What I am saying is that I wasted very productive, active years of my life without chronic illness doing a lot of stuff that didn't matter much. FND has made me take the time for the things that matter. I'll give you some examples; in the morning, the taste of that first cup of coffee.... is heaven. It's wonderful to drink my coffee hot now, not lukewarm. I listen to the birds in my yard, and take the time to watch them eating seeds from my 8 ft tall sunflowers. I breathe deeply now. I call my kids and mom more often, just to hear their voices. If there are chores I'd like to get done, then I do what I can, and don't fuss over it if I can't complete them.
Recently, I've had to step away from a career that I worked YEARS AND YEARS to accomplish, lost a great wage, benefits, wonderful people that I worked with, a pension....I'm devastated. FND has taken that away from me, and there's nothing I can do about that. But now, I am reexamining what I CAN do while living within the spectrum of chronic illness. I've never before given any thought to what else I could do in this life. I've married, raised children, managed a home, got a degree, developed a career.... what else is left? Well, when you have an illness that limits what you can do mentally, and physically that can be a tough nut to crack. Surprisingly, FND has given me options??!! Strange isn't it? Never before had I though about doing anything else in my life for work, and now I have to think about it. I find myself asking: What am I good at? What skills do I have that would allow me to continue working on some level with this illness? What would I like to do? Am I willing to take courses at this age to do something else? Will my brain even allow me to take in new knowledge now???
Speaking of brain....the fog is now rolling in which means I need to wrap this up.
Yes, FND has taken....and taken.....and taken from me. But now I can see that it has also given, in some small degree. So here's my list of gifts from FND that I am grateful for:
1. Time: time to think, time to breath, time to reflect.
2. Self awareness: examining how my body feels, and how my brain is functioning. Day to day, hour to hour.
3. Kindness: being kinder to myself, and in so doing, being kinder to others.
4. Priorities: making the things that matter come first, and the rest can wait.
5. Joy: enjoying the small things that I never took the time to notice before.
Has FND given you any of these things? Do you think having this illness can open new doors for you? I'd like to hear about how to find gratitude while living within the continuum of chronic illness. Please share your insights, and send me an email. In the meantime, breathe deeply, and enjoy the little things.
Let's Talk About...Humor
When I grow up I want to be diagnosed with an illness that gives me muscle spasms, tremors, brain fog, inability to speak or move my limbs, and seizures!
Let's Talk About... Pain
I'm going to be brutally honest on this post, so please don't read it out loud with any little ears nearby, because I am not holding back on the swears today! I've been in a very dark place lately. Not wanting to share my misery publicly, I've held back from writing until the sun comes back out so to speak. So here I am, a little less miserable, typing fingertips at the ready to write about my favorite asshole, the monkey on my back, the little shadow that never leaves …..pain.
Let's Talk About...
For those of you who don't believe that what we eat has an impact on our symptoms...well, you can read on and prepare to be educated, or remain in denial and don't read this blog at all. Ignorance is definitely NOT bliss when it comes to symptom management and food. I'm going to provide information on several person's that I've found to be both inspiring, and educational when it comes to how diet affects our bodies and our health. I encourage you to keep an open mind, do the homework, and give this area some clear consideration in your FND journey. As always, please consult your most trusted health care provider before making any changes to your diet or exercise program.
Let's Talk About...
I had a physiotherapist give me the BEST advice about mitigating my most hated symptom....BRAIN FOG.
Let's Talk About...
DIAGNOSIS
Every single one of us has had a different experience with FND symptoms, but I'm willing to bet we've all had very similar experiences with diagnosis. Let me know if any of these statements sounds familiar to you...
"I'm sure its just stress. How's your home life?"
"You don't look sick."
"I can't find anything wrong with you, all your test results are normal."
"It's psychological, you need to see a therapist."
"You're just lazy and don't want to work."
"You just need some rest. How's your sleep been?"
Yup, I thought so. Many of you have probably heard those phrases word for word. We all know our bodies better than anyone else, and we know when something just isn't right. So we do what anyone else would do, we go to the doctor. We go to multiple doctors looking for an answer, we pay for tests out of pocket in search of clues, we try going to naturopaths, homeopaths, osteopaths, take supplements, change our diet, the list is endless. Problem is, most doctors are looking for a test result to be abnormal to determine the cause of illness. FND doesn't present like that. On paper you can be the picture of health, but you can't move your legs, or you have tremors, seizures, (insert any number of FND symptoms here...) FND is very difficult to diagnose, mainly because many doctors haven't heard of it, OR they're in the "oh this must be a mental illness" camp. Needless to say it can take years to get a diagnosis.
Diagnosis can be one of exclusion, meaning doctors have ruled out anything and everything else it could possibly be. This route may include things like blood tests, MRI or CT of the brain and spinal cord, electromyography, or electroencephalography. So many other illnesses share symptoms with FND that it's important to look at everything. (for example MS, Parkinson's, Epilepsy, Lupus, Fibromyalgia, etc.) Getting a full range of diagnostic testing done saves time in that when you finally see a specialist they have all the information they need to give you a proper diagnosis. Having said that...appointments to get tests can take months, and getting referrals to specialists can take up to a year or more. If you get lucky and are referred to a neurologist who is familiar with FND a diagnosis can come fairly quickly.
This is the area of FND that requires you to be your own advocate. Be a warrior for your own health. Doctors may try and convince you that nothing is wrong, because on paper it appears to be true. They may suggest that it's "all in your head" because they don't know what's wrong, and don't have the time to do a deep dive into your health. Keep pushing for answers, get second opinions, ask for those tests. Getting a proper diagnosis is the doorway into getting proper treatment. And if no one is going to open that door for you....kick it in.
Let's Talk About...
GRIEF
Most of us have experienced grief of some form by the time we reach adulthood. The loss of a friend, family member, or pet can be devastating and difficult to move through. The kind of grief I’d like to talk about is the kind brought on by chronic illness.
It is similar in many ways to traditional grief. We go through some or all of the stages, denial, anger, bargaining, depression, acceptance. Yet some how it’s different. Only a person going through chronic illness can understand the type of grief that it brings on, and what that encompasses.
Denial: FND is often a misunderstood illness. Some medical professionals are convinced that it’s “just a mental illness.” When receiving a diagnosis of FND, you may go through a form of denial. I sure did. I saw the words “conversion disorder” and thought, “I’m not making this $%^^ up! I don’t walk around acting stoned and losing my balance for fun…WTF?” I was certain that it must be something else, something that can be fixed, cured, medicated away…ANYTHING! I continued to go to work through the worst symptoms, trying to maintain the same level of productivity and normalcy I’d had before getting sick. Trying to continue the same level effort only made the symptoms worse. Of course It wasn’t until a neurologist explained it as a problem with the functioning of the wiring of the brain/CNS that I was able to come to terms with this diagnosis and move through the denial.
Anger: Then came the anger. Anger that an illness can take away all the things I used to be able to do. I was embarrassed to speak to people due to losing my train of thought, being unable to find words, or slurring words. I was embarrassed by my unbalanced gait, and frequent stumbles. I began to avoid socializing to save myself the humiliation. That burned into an ember of resentment. “How could this have happened? I do everything right; I don’t smoke, or do drugs, I eat healthy, I don’t drink often, I exercise regularly. This is ridiculous.” I became impatient with myself, and at times with others. I was beginning to lose my independence, and therefore my identity. Perhaps you’ve felt the same way?
Anger is a very slippery slope, so don’t lose your footing and let it get the better of you. When we suffer from an illness that takes away our independence anger can become a way of hiding what’s really going on: frustration at feeling no sense of control. Asking for help is so difficult at times. Especially if you’re known as being a fiercely independent person. But truly, it’s not a sign of weakness. It’s a sign of courage. It takes immense courage to allow people to see you when you’re vulnerable. The people that love us are feeling helpless and at a loss of what to do. When we ask for help, we are offering them an opportunity to show their love for us. It can enable them and us to work through the anger that comes with grief. So, when someone comes to you and says “What do you need? Can I do anything for you?” Tell them what you need and be specific. “I need help vacuuming, walking the dog, getting groceries, etc.” Tell them what you need, and thank them for their help. It is healing for both the giver and the receiver.
Bargaining: This one is tricky. When we get stuck on comparing ourselves now to the person we used to be, that's bargaining. The truth is chronic illness changes you, in every way possible. It's ok to think about the things we used to be able to do before FND. The problem arises when we begin to ruminate on those lost abilities, and look upon what we are capable of now of as "less than." Do we look at a person who is going through chemo and say, "What are you doing complaining about being tired? Just get up and go!" NO OF COURSE WE DON'T!!! Why then do we beat ourselves up for the things we can no longer do because of our illness?? Makes no sense at all does it? All of us with FND have a fear that the illness will get worse. We develop anxiety over losing our independence/job/career, etc. And yes, those things are a possibility, but so is recovery. There's always a chance that we will experience remission, or perhaps regain some of our lost function. Focusing on the things we CAN do is certainly going to help us progress better than focusing on what we've lost. Today maybe you can only walk to the front door, tomorrow maybe you can make it down to the sidewalk. Doesn't seem like much to some, but to a warrior it's the beginning of greater things to come.
Depression: This one is a nasty piece of work. I'm going to be honest here; DEPRESSION SUCKS. It not only sucks the energy out of you, but of everyone around you. It can be one of the most difficult areas of chronic illness to overcome. FND can take away from us our ability to walk, to speak, to work, to think clearly, independence, etc. FND brain fog can make even the smallest tasks feel overwhelming. Socializing in large groups or areas of loud noise with lots of activity can bring about the brain fog. So then we stop going out, and we begin isolating ourselves from others. We may stop visiting friends, or inviting people over because we don’t want them to see us on our bad days. We can become a shadow of the person we used to be. These are all signs of depression. When we only visit people on our “good days” we become unwitting endorsers of the idea that we are actually just fine. If you are suffering from depression, you are not alone. It can plague anyone, at any time, and for no reason at all. Please reach out to your doctor, call a friend, and seek support. Do it quickly. Do it now.
Acceptance: Accepting a diagnosis of FND looks different for each of us. It can happen at that moment, in the clinic when the doctor finally labels all of the symptoms you've been going through. It may happen later, after you've done a bit of research and realized you haven't been imagining the symptoms you've been experiencing all this time. Or it can be a slow realization that happens over time, as you begin the work to regain some of what you've lost. Acceptance involves self compassion; being kind to yourself, knowing that just because you can't do something today, it doesn't mean you can't try again tomorrow. It means celebrating the small things. By the way, we all get fooled into thinking life is about the BIG stuff. (Going to university, getting a job, getting married, having kids, buying a car, etc etc. ) Guess what? We're wrong. Life is about the little things. Life is about that amazing cup of coffee you are having this morning. It's the hug from your little one with the sloppy, drooly kisses on the cheek. It's your dog greeting you every time you walk in the door like you've been away for YEARS! It's the hug you give a friend when they're crying, or the lame dad jokes you share with your kids. FND can never take away the little things that matter. FND will knock you down, accept the diagnosis, brush the dirt off, and get to work doing the best you can do, no matter how small it may be. Remember, you are an FND warrior, surrounded by an army of people just like you. Together, we can conquer anything.
https://www.washington.edu/counseling/2020/06/08/the-stages-of-grief-accepting-the-unacceptable/