FND Relapse | FND | Functional Neurological Disorder
My Journey

My FND Journey Part III: The Relapse – Denial and then Acceptance

About six weeks after the birth of my second child, I started to relapse, and I went into major denial about it. At first I thought I was having a few bad days because the temperature went up to 70 degrees in December 2015. I was thrilled I could take my kids outside to play while I was out on maternity leave, but my body had other plans, and I was laid out on the couch for most of the days we had the warmer weather. Damn weather changes and heat triggers!

Looking back having two large babies in two years and three weeks was very taxing on my body. Baby 1 was 9 lbs 12 oz at 10 days late and Baby 2 was 8 lbs 5 oz at 5 days early. I’m 5’2″ and weighed 130 lbs prior to both pregnancies.

In addition to two large babies, my body had to recover from two c-sections, and I nursed both babies. I nicknamed my first child a “man-baby” because he was so huge and ate like it was his last meal every meal. He would nurse for 15 min on each side for every feeding. For at least the first three months I went back to work he demanded to nurse for an hour every day when I got home from work.

When I delivered my second child my body thought I had created another “man-baby” and my body was overproducing milk like crazy. I was still horribly engorged six weeks after giving birth. Producing all that extra milk was a lot of wasted energy for my body.

Between overproducing milk, recovering from a second c-section, sleep deprivation and caring for a newborn and a newly turned two-year-old my body had had enough.

For those that don’t know, it takes a year for a woman’s body to recover from pregnancy and I got pregnant just one year and three months after my first delivery. That was too much for my FND body.

It’s still upsetting to think about this time because it was one of the happiest times of my life, which shortly turned into one of the worst times of my life.

At first, it was sporadic – the dystonic episode and feeling of severe fatigue. I thought I was feeling bad because of the change in the weather and I was sleep deprived. I wasn’t completely down and out but there were many days in December where I was on the couch the majority of the day.

It wasn’t until 6 – 8 weeks after that when I went back to work in mid-January 2016, that my body hit a complete wall. It was horrible.

Going Back to Work Midst a Relapse

I would wake up unable to move my legs and my muscles were aching so bad. I had to stay in bed until I could move my legs making me late for work (generally an hour sometimes more). When I could finally move them I was literally peeling myself out of bed.

I was walking with a limp full time now because my right toes were constantly curling and my right knee would not extend fully when I stepped forward. Sometimes my left leg would also be affected and I would be walking with both my knees bent.

My brain was in a fog 100% of the time, but I didn’t even realize it until 9 months later when I finally reduced my hours at work and the brain fog lifted.

To be honest, I look back at that time and I really don’t know how I functioned. I think the only thing that helped was that a lot of my brain chatter had turned off. You know the voice in your head. I guess my brain was so fatigued it couldn’t even talk to itself (Ha!). It was sort of a blessing and a curse because I would just do, get through my day and never second-guessed should I be doing this? Am I hurting my body?

You may also be wondering how my emotional well-being was at the time I went back to work. Well, I wasn’t having anxiety or resentment over leaving my kids like I did when I went back after my first child was born. We had just found a new in-home daycare provider who was wonderful, and my oldest was talking enough to tell me if something bad was happening. Since I had gone through this once before, I knew what to expect and things were going well in terms of that.

For 6 months, I attempted and failed to work 40 hours a week. There was always at least one day during the week where I was late because of my symptoms.

Let me tell you. I was also in MAJOR denial this entire time. Remember when I was told by two doctors that I should make a full recovery? Well, I was holding on to that for dear life instead of listening to my body. The word relapse wasn’t even in my vocabulary. It wasn’t even in my mind that I could actually be relapsing.

I was also nursing, and I really wanted to nurse baby #2 for a year just like I’d done for baby #1. I didn’t want to go back on meds because then I couldn’t nurse.

Also, the thought of preparing bottles and buying expensive formula caused me so much stress that I just pushed on because it was just too much to handle at the moment.

Looking back I have realized how much of an idiot I was but I know I’m not the only nursing mom that’s had unhealthy and irrational thoughts about nursing their baby at the expense of her own health.

Also, when you’re stubborn and determined to do something, and your brain is not functioning properly and not second-guessing any ridiculous conclusions then you find ways to try and make your life work.

Contacting Human Resources (HR)

Work was rough, and my mom started encouraging me to go on short term disability. I kept pushing it off because I felt guilty to take the time off since I just came back from maternity leave.

But about six weeks after I returned from maternity leave I contacted HR to inquire about short term disability. When I met with HR, I was introduced to an ADA accommodation which would allow me reasonable accommodations like working from home one day or not getting penalized for coming in late if I had a flare up. All of these accommodations could be provided by a form filled out by my doctor.

I went back to see the neurologist and homeopathic doctor again. The neurologist gave me some news I didn’t want to hear. He told me that since my symptoms came back I was more than likely predisposed to this condition especially since I experienced something similar when I was a toddler. He offered to prescribe meds but I refused. Because? I was nursing.

Declining Work Performance

Despite the amount of effort I was putting in, which was all I could give at the time, my job performance started to suffer.

Things also went sour with my boss and our relationship went from pretty good to pretty hostile. HR got involved, and even at one point, the General Counsel’s Office had to get involved.

Let me tell you, as scary as it was I’m glad I told HR the situation before my mid-year review occurred. I’m also glad I had an ADA Accommodation in place and later FMLA because otherwise, I’m pretty sure I would have been fired if HR hadn’t known about the hostile treatment. If they hadn’t known, I don’t think there would have been much I could do about it. It would have been my boss’s word against mine, with his word coming first.

I won’t go into details but let’s just say my boss did not know all the rules of an ADA Accommodation or FMLA or things you can or can’t say to an employee about their illness.

It was quite sad really because I had worked for this manager for eight years. I had worked for him before I got sick, while I was on disability before, and during my remission. He knew my work ethic but treated me like I’d never proven myself and worse.

Looking back there were so many signs that pointed to me needing to go out on disability, but I couldn’t see them.  I was in such denial that I couldn’t get out of my own way. Even with my mom and sister telling me on the phone I needed to take care of myself. The guilt of leaving my team hanging was overpowering, and with a brain that was too sick to chat some sense into me, I went into survival mode.

I don’t want anyone to have to go through this experience, and because of this, I created a six week check-in survey to help others gauge how well they are doing. Even if I only help one person realize how much they are suffering, putting this survey together would have been worth it.

My Rock Needed a Rock

You might be wondering where was my husband in all of this.

About a month or two before our second child was born, my husband, TJ, started to slip into a depression. Over the course of the next six months, I really didn’t notice it. Mainly because I was dealing with a lot of my own stuff and a newborn.

It wasn’t until I was back at work for two months that TJ told me about his depression. My world started crumbling. I didn’t know what to do. TJ was my rock. He is my constant. How was I going to make it without him being him? I didn’t even know how to help him? How could I when I couldn’t even help myself?

I remember crying to a coworker the day after TJ told me about the depression. When he told me, I could really see it. He was right, it had been there for a while, and it was getting worse.

Over the next couple of months, I saw him slipping further and further away. All that was left sometimes was an empty shell of him. He became very irritable and would yell at us which I knew wasn’t him but the depression. Knowing that still didn’t make it any easier to deal with sometimes.

My therapist was my saving grace. She gave me the tools to talk to TJ and to encourage him to see a therapist.

By May of 2016, I had finally convinced him to see a therapist. He went for about a month. He would have continued but there were things about the therapist he didn’t like and he didn’t want to start all over with a new one.

Despite him only going for a short time, it really helped open the communication between us. Our relationship got stronger and I could tell he was really trying to fight the depression.

Then one day in July we were walking to a Chuck E Cheese birthday party and he noticed an MMA gym and said he was thinking of learning jujitsu. I told him a friend of mine owned an MMA gym near his office and I would reach out to him.

The last weekend of July 2016 we headed over to my friend’s MMA gym for a family picnic and free trial class. That was really the first day of TJ’s healing from depression, and the beginnings of being a “Kung Fu Panda”. They literally call him a panda at the gym. Lol.

Finally Getting Help…Well Sort of

Around May 2016, I went to see the holistic doctor and he put me back on supplements. While they did help and I could nurse while taking them, it was too expensive to keep it up. With two kids in daycare, we couldn’t afford it so I tapered off of them.

Once I did that, my symptoms came right back and even worse! The first week of August 2016, I missed three days of work in one week, and I would have missed four or more if I didn’t work from home on Wednesday of that week.

Admitting Defeat

I hate using the word defeat but at the time that’s how I felt. Defeated by my own body. I finally came to terms that maybe I was having a relapse and I couldn’t do this on my own and I needed help.

The week after I nearly missed a week of work I contacted my HR department and requested to go on partial short term disability. I could work. I just couldn’t work full time. I also set up an appointment with my neurologist so I could start back on the Flexeril.

I won’t go into too much detail here but I was misinformed by my HR department regarding my elimination period for my partial short term disability.  This incorrect information did end up delaying when my short term disability started.

I can’t remember how long it took but I know it was sometime in the fall of 2016 that my brain fog finally lifted, and I could think clearly for the first time in almost a year. I also noticed my brain chatter was back and boy was it kind of a Debbie Downer and insecure.

(Side note, when my brain chatter was silenced I had so many business ideas and I was really creative again. I felt like I did as a kid before I went on Ritalin for ADD. I thought all my ideas were great and that I could do all of them. When the brain chatter came back my mind started analyzing all the different business ideas I had and most of the time the chatter would say, “Are you crazy? This would never work.” Or “Omg do I really want to deal with the types of people you’d be attracting with this business?” Or “Why did you ever think you wanted to do that. You hate shopping!” See? Total Debbie Downer! The hating shopping comment was pretty legit though. Lol)

Once I admitted to myself that I was not okay, I decided I needed help and I needed more answers. While I had dystonia, it wasn’t my only symptom, and the doctor who had diagnosed me with dystonia caused by a medication interaction couldn’t provide me with any additional information.

I scheduled another appointment with one of the areas top movement specialists. I had seen him once before when I first got sick, and he was one of the doctors that told me it was just stress. But I wanted to get a second opinion, and I was curious if he would change his mind since I still had these symptoms 6 years later.

Continue reading my journey Part IV: The Long Road to Remission.

Sara at Managing Chronic

Sara at Managing Chronic

Sara has worked in corporate America for almost 15 years, and she's worked the last eight years with FND. Her FND comes with paroxysmal dystonia, chronic fatigue, brain fog, sensory overload, muscle pain, and more. She is currently a part-time career woman, a mom and a wife.

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