Tips on Living and Working with FND

Hi Everyone,

My name is Sara Allen. I’m the founder of Managing Chronic, and I help people manage their work and home lives while living with a chronic illness. I’ve lived with FND continuously since August of 2010, although looking back, there were signs that it may have been there for a while. So I’m coming up on a decade of living with this interesting condition, and today I’m going to be sharing some of the tips I have on living and working with FND.

If you’d like to follow along you can find my entire script and links to everything I’ll be referencing today on my blog at managingchronic.com/fnd-conference-2020.

Before I get started, I want to provide a little background so you can see where I started in terms of my mindset, because for me learning to change my mindset has been one of the most successful things I’ve done since my FND started.

I’m not going to lie, the first year and a half living with FND was really hard for me. I was 28 years old, very depressed, recently married, but unable to be the wife I wanted to be, unable to work full time, unable to workout or salsa dance, and I had no diagnosis. My workdays consisted of working 20 hours and then resting, and on the weekends, I rested. That was my life. 

Unfortunately, I projected a lot of my anger from FND onto my poor husband.

After over a year of marriage, my husband finally got the nerve to tell me how mean I was being to him. It pains me to say that I had no idea I was behaving so badly. Long story short, I found a book called The Proper Care and Feeding of Husbands by Dr. Laura Schlessinger. It’s not as old school as it sounds!

Anyway, this book saved my marriage and taught me how to communicate with my husband

When I changed my tone and how I responded to my husband, our relationship improved dramatically. This was the first time I realized I COULD still be a good wife even if I couldn’t do anything around the house.

This mindset shift opened the doors to other mindset shifts that I’ve made since then. Some of these have had a major positive impact on my life, and so I’ll be sharing them first and then transition to other tips.

1) I focus on CAN instead of CAN’T

I now try and focus on what I can do versus what I can’t do.

With all that I have lost, it is so easy to focus on everything I can’t do, but I can still do things.

For example,

I can and do give lots of hugs and kisses to my two little guys.

I can still work.

I can do arts & crafts.

Yes, there might be “buts” to all of these, BUT the goal is to only focus on the positive.

2) Gratitude

Gratitude has really helped me focus on the positive aspects of my life, even when things aren’t going so great.

It also gives me so much more appreciation for my husband and all that he does for our little family and me. I had started to take a lot of what he did for granted, but now I’m more aware of what he does, and I feel so thankful and lucky.

Gratitude is something you can start right now. You can either write it down or share your appreciation out loud with someone. Try to say or write down three things you’re grateful for each day.

If you’re stuck with finding something, you can always start with something small and more generic, like I’m grateful the sun is shining today. I’m grateful for my pets. I’m thankful I got out of bed today. I’m thankful I walked a few steps today.

It doesn’t have to be earth-shattering, but as you start doing it more and more, you will start to see new things that you are grateful for.

3) EFT – Tapping

I was introduced to tapping over a year ago, and it has done wonders for me. I like to describe Tapping or Emotional Freedom Techniques (EFT) as kind of like meditation and affirmations rolled into one all while tapping specific points on your body.

In my personal experience, tapping has been a great practice to clear stress and release limiting beliefs.

The first tapping video I  watched was Amazing Day Quickie by Brad Yates on Youtube. With this particular one, I didn’t feel any effects right away, but after a few weeks, I started noticing little wins that I’d never noticed before. 

Since then I’ve done other tapping videos with Brad Yates and Brittany Watkins and some of them have had immediate positive effects on me.

4) I no longer give “what if” thoughts any time of day because they’re a gateway to negative thinking.

For example,

“What if I didn’t have FND, then I could be a normal mom.”

OR

“What if I could run a marathon, but I can’t because I have FND.”

Need I say more?

Sometimes my brain gets stuck in a negative thought loop where I can’t stop thinking about the negative thought.

And when this happens, I’ve found that tapping, meditation, and writing what I’m grateful for can help stop the loop of negative thoughts.

5) Grieving for your former self

FND is such a life changing condition that I’ve grieved for my old self twice. 

The first time I grieved was after I was getting no help from the medical community. No one was listening. All doctors kept telling me was that it was just stress, and that was stressing me out.

At that time, grieving helped me be comfortable with the status quo. 

The second time I grieved, I really grieved hard. 

I unexpectedly went into a remission of sorts for about three years. This was still before my FND diagnosis. I was told I would make a full recovery, and I wholeheartedly thought I would.

My symptoms never went away completely, but to the outside world, I looked normal, and I was able to work full time.

During this time I had two children.

Six weeks after the birth of my second child, I started to relapse, and I went into major denial about it for nine months.

When I finally acknowledged to myself that I needed help and I was, in fact, having a relapse, the realization that this condition could be permanent came to light. It was during this time depression came over me again.

It would be another six months before I finally received the correct diagnosis, and my grieving process really began.

This time I even suggested to my husband that maybe I should have a funeral for my old self. My husband gave me a “seriously?!” look but said he would do it with me.

I never ended up going through with the funeral, but I know saying it out loud really helped me complete the grieving process.

Once I grieved, I was able to stop telling myself, “When I get better, I’m going to do X.”

Instead, I can now say, “I want to do X. What accommodations will I need to make it happen?” This way, I live a life I can enjoy rather than waiting for the right moment when I feel better.

If your FND has been life-changing, grieving for your old self may be a way for you to move on and be at peace with your new self.

If you need to have a funeral for your old self, then do it! It offers closure. Don’t worry about what other people think about it. They aren’t the ones living with this new body. You are.

I’d also like to add that the practice of self-compassion would have greatly assisted me with this grieving process. I didn’t learn about it until late last year, but Dr. Kristin Neff has a fantastic website that talks all about self-compassion, and she offers free meditations and practices to help you get started.

Basically, self-compassion is talking to yourself as if you were talking to your best friend or loved one during their time of suffering. 

Instead of relying on being comforted by others, which may not be comforting to you, the practice of self-compassion gives you the gift of comforting yourself. I highly recommend checking it out. 

6) Find a Hobby You Can Do with FND

When I first became sick, I lost all of the things I loved to do the most. I lost the ability to read for pleasure, to work out, to go salsa dancing, and to talk on the phone for hours with friends. 

I literally became a professional couch potato, and all I did in my free time was watch TV.

After I had grieved for my old self the second time, I started to think that I should try a new hobby that I could do from home, and that’s when I got back into counted cross stitch.

What I love about my hobby is it exercises my creativity, it reduces stress, it doesn’t matter how fast or slow I move or if I have brain fog because I can still create something beautiful. 

I have a blog post that offers more than 39 things you can do instead of watching TV. There are 39 in my post, and then so many people have graciously offered some other amazing ideas in the comments to help get you started.

7) Plan Your Week

Working with a productivity coach has really helped me design a system where I can be the most productive with the brain capacity that I have, meaning before the brain fog sets in.

One of the techniques taught by Demir Bently at Lifehack Method is to plan every half hour of the week.

This may sound like a lot of work, but it doesn’t take too long, and I’ve found it very eye-opening, useful, and stress-reducing to plan my week.

Planning my week allows me to decide when I should schedule each task to maximize my productivity. Also, it will show me how crazy my week might be. It’s at that time; I can decide if the week really needs to be that crazy or if something can be delayed until the next week.

If I do start to feel overwhelmed during the week, then I just follow the plan, and it takes away any second guessing or bad decision making I might make because I’m stressed.

This, in turn, lowers my stress immensely. It also saves me time and energy because I already know what I need to get done, and when I need to do it.

Of course, the weeks never go quite as planned, but it doesn’t take much effort to reorganize tasks if need be.

If you want to help reduce stress, be more productive, save time and energy, I highly recommend trying to plan your week.

8) Scheduling Rest Times

This compliments the planning your week tip, and that is to schedule rest times into your calendar.

There’s a difference between resting because you overworked your body, and now it has to recover, and preemptively resting as a preventative measure, so you don’t end up in the first scenario.

When I started dedicating time between work and when I picked up my kids as rest time, I started to be able to do so much more in the evening without crashing before my kids’ bedtime.

This was pretty significant because there are days (pre-corona virus) where my husband wouldn’t be home until after the kids were in bed because of work and jiu-jitsu.

Another easy place to schedule a complete break mentally is lunch time.

Once I started taking my lunch away from my desk, I was amazed at how much longer I could work in the afternoon before the brain fog would creep in.

9) Look into Reduced Fare on Public Transportation for Individuals with Disabilities

If you ride public transportation, check the reduced fares qualifications on your city’s transit webpage to see if you could qualify for reduced public transportation fare.

I was told that I didn’t need to use a mobility aid every day to apply and receive the benefit.

You and your doctor will most likely need to fill out an application to prove medical necessity, and you may have to submit the paperwork in person.

The remaining four tips all relate to working with FND.

10) Know the work disability benefits and accommodations in your country. 

This is so important because this may be a place where you’ll most likely need to advocate for yourself.

Human Resources may not be completely forthcoming in letting you know what all is available to you. You may be surprised to hear this, but this exact situation happened to me.

If you work and you live in the US, I highly recommend that you apply for intermittent leave through FMLA or the Family Medical Leave Act. This will cover if you have a flare and are out for a brief period of time. FMLA is there to protect your job if you are unable to work due to your medical condition. 

I won’t go into much more detail here since not everyone listening lives in the US, but you can find all this information on my blog, and I also have a link to Finding Accessible Work with a Chronic Illness for those of you that live in the UK

I also highly recommend looking into getting an ADA accommodation if you have symptoms that can negatively affect your work performance, such as brain fog, speech issues, sensory sensitivities, etc. 

The Job Accommodation Network is a great resource for finding reasonable accommodations by symptom. For example, I requested a private office to use as needed due to auditory overstimulation, which was triggering my brain fog. I didn’t get the office, BUT my employer provided me with a pair of high-end earplugs that work really well, and they moved the really loud guy to another part of the office.

11) Always follow up with your doctor regarding disability paperwork.

I have learned this the hard way multiple times. Every time I think that the system is going to work when submitting my work disability paperwork, something inevitably goes wrong.

To avoid this, I highly recommend following up with your doctor, insurance company, or your employer when the paperwork is supposed to be changing hands, in order to confirm the correct party now has the paperwork.

If there’s any confusion with populating the paperwork, ask your doctor if you can provide a version of the paperwork prepopulated with what you need in the request.

This may seem tedious and time consuming. But, from personal experience, it’s no fun chasing down your paperwork after the deadline to submit it has expired. Some insurance companies provide more leeway than others on the deadline, but it is a hassle nonetheless. My advice is to follow up every step of the way.

12) Employee Expectations

Keep your manager informed of all schedule and disability status changes.

Always know what the employee expectations are when you are using disability benefits and/or accommodations. They should be listed in your Employee Handbook, but if not, or if they are vague, follow up with HR.

Always provide your manager, in writing, notifications of all schedule and disability status changes. Whether you’re applying for FMLA for the first time or applying for long term disability after your short term disability runs out, keep your manager informed at all times.

13) Looking for a job

Through a joint initiative by Disability:IN and the American Association of People with Disabilities, the Disability Equality Index (DEI) was created. The annual DEI is designed to identify top companies that promote disability inclusion in the workplace.

In the 2019 DEI, 87% of the participating companies scored 80% or higher on disability inclusion. You can see the list of companies that scored 80% or higher at the end of the DEI report. I mention this because many of these companies are global companies so it’s worth checking them out.

I’ve also found several job boards, specifically for individuals with disabilities. There’s one in particular, Chronically Capable, that specializes in helping people with chronic illnesses find remote jobs. 

Again you can find the links to everything I’ve referenced today on my blog at managingchronic.com/fnd-conference-2020.

In closing, I would say that living with a positive mindset and grieving for my old self were the biggest game changers for me, and because of these shifts, I have become open to embrace happiness, contentment, passion, determination, and success once again.

Thank you.

4 Comments

  1. Avatar

    Thanks for your presentation! It was a pleasure to hear how you have learned how to cope with FND

    1. Sara at Managing Chronic

      Matt – Thank you so much!

  2. Avatar
    Connie says:

    It was a pleasure to read what you have posted. I have been dealing with this for a few years now. It’s very life changing. My doctors don’t know I have it and I don’t believe I will ever tell them. I do know it’s something we will live with for the rest of our lives and it’s something we will always struggle with. I like the idea of having a funeral for my old self and will portray this in a piece of art. I wish you the best in this journey of life and commend you for placing this out there. I believe a lot of people with this condition are being overlooked and underserved by the medical community and it’s terrible. I have tremendous uncontrolled migraines which cause right sided body pain and weakness, internal tremors, terrible brain events that feel like there is some sort of chemical dump and I feel very awful for a few minutes, chronic pain to the right side of my body, chronic dizziness, muscle twitching, flashing vision, low back pain. Developing fibromyalgia. There are days I use a cane because of balance issues. Keep fighting the good fight.

    1. Sara at Managing Chronic

      Connie – Thank you so much for your comment. I agree with so much of what you say about FND. In the next decade, I hope that more people will learn about it, and many of us will have treatment options versus falling through the cracks. I’m also really surprised you haven’t told your doctors. I think some I could get past, but others I can’t. Sometimes my symptoms are pretty obvious, so I think they would question me about it.

      I love that you are paying respect to your former self in the form of art. I think that’s beautiful, and I hope it helps. ❤️

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