Resilience : the ability to recover or adapt easily to misfortune or change (https://www.merriam-webster.com/dictionary/resilience): the ability to stand up to challenges, work through them step by step, and bounce back stronger than you were before (https://www.urbandictionary.com/define.php?term=Resilience)
Let's be honest, not all of us have resilience when facing challenges in life. But don't despair, resilience is a process and it can definitely be learned! In order to have the opportunity to flex those resilience muscles, first they have to be stressed.
Well, FND certainly is stressful so let's start there.
According to Yale Medicine (yalemedicine.org) there are 8 ways to build resilience. Let's look at them from an FND perspective.
1. Practice Acceptance- from an FND perspective, accepting the diagnosis is a good beginning. Accept that most people haven't heard of this illness, and that you may have to educate them, (that would include your doctor.) From there, we can move on to symptoms. Accept that symptoms are going to be unpredictable, and vary in degree of severity and duration. This illness may be with you for the rest of your life, but it's not the end of your life. Accept the challenges that FND provides us. We will have to work hard to maintain function with this illness. We will need to ACCEPT the help of others, even when we're aren't used to asking for help.
2. Positive Reappraisal- this is a fancy way of saying "look on the bright side." Basically, stop focussing on what you CAN'T DO, or USED TO BE ABLE TO DO, and start focussing on what you can do NOW. Thinking about how we used to function is a dead end road. Trust me, I've travelled that road, it leads no where. Each day, make the effort to do something challenging, and start small. Then celebrate your successes! For me, being able to walk my dogs for 30 minutes instead of 20 is a success. Some days just being able to shower, and do a load of laundry is a success. Just because you aren't able to walk without a cane today, it doesn't mean that you can't try again tomorrow. Putting all of our mental energy into negative thoughts is a waste of time, so don't bother. But never give up trying. Be grateful for the ways you can succeed, despite having FND.
Another form of positive reappraisal is to practice gratitude. I hate FND, but I am grateful for it in some ways. It has made me take better care of myself, eat better, be kinder, and especially to enjoy the small things in life. Find something you can be grateful for every day, even if it seems small.
3. Build social connections- Having healthy relationships is the cornerstone of a happy life, in my opinion. When you have FND, you find out who your real friends are. Learn to avoid (or cut loose) those people who aren't supportive of you. (This may also include doctors I'm afraid.) That doesn't mean we have free rein to complain about our illness all day and night. What I do mean is that your friends and family should understand that you're going to have good days and bad days. With FND sometimes we have to bail out of planned events unexpectedly. Find supportive people who understand that, and that you don't constantly have to explain yourself to, or apologize to all the time. Surround yourself with positive, uplifting people. In other words...find your tribe.
4.Practice self care- With FND, or any chronic illness for that matter, self care is extremely important. It's not always easy to make time for it though. Between managing a family, home, work, and a chronic illness the task can seem impossible. Self care doesn't have to be anything big, extravagant or fancy. Sometimes, it's just making it to the salon for a hair cut, sometimes it's reading a chapter from a novel before bed. Explore what "self care" means to you, then start with something small and manageable. Expand your self care practices as you go.
5. Engage in valued activities- Valued activities.... that is going to be different for everyone, and will depend on our physical abilities at the time. One of my favourite, MOST valued activities is hiking. Well, with FND that's no longer easy for me. So, I have to make adjustments. For example, on a good day, I can hike/walk a short distance with the understanding that I will see an uptick of symptoms later that day. This is a sacrifice I'm willing to make if it means I get to enjoy the beautiful forests and mountains of the Rockies- well worth the pain! But, on other days hiking is out of the question. So, another valued activity is working with air dry clay, painting on canvas or watercolour, or reading about plants. The symptoms often dictate the activity, but that's alright. When you give yourself permission to have more than one valued activity, and some flexibility with your FND symptoms you can find something meaningful to do. Taking the time (guilt free) to do something that brings value and pleasure in your life is good for you, and by relieving stress may also help ease some of the symptoms of FND.
6. Make adjustments at work- Wow. That can definitely be a tough one. Many of us with FND are no longer able to work. If you are working, there are options (depending on the circumstances of course): Being honest with your boss or trusted co workers about having an illness that may require accommodations, moving into a different career path, opting to change the number of hours you work (full time to part time for example), or working from home if possible. I chose the route of giving up a full time, shift work, mandatory overtime job for a part time, days only position. Unfortunately, I still had to leave my career due to FND. So I understand the difficulty, and sacrifice of making adjustments at work. Your best bet is to research what options are available to you, depending on your circumstance. Reach out to those who may be able to help or offer advice, and do the best you can. That's all anyone can expect, because there's no single answer.
7.Make adjustments at home- Home life can be challenging to make adjustments to. If you have children that depend on you, or an elderly loved one, or even a spouse with a disability my heart goes out to you. FND can make the smallest tasks seem gargantuan, but let's think about some options anyway. I'll give you an example of adjustments I had to make in my life- before FND even came along.
I was going full-time to university to study nursing, and working part time at a nursing home. My husband worked away for weeks at a time, and I had 3 adolescent children going through the difficult transition called "the teenage years." (No explanation needed there I bet!) I felt overwhelmed. The desire to be a straight A student, a good mom, and keeping a clean organized home seemed impossible. So, rather than drink myself into a stupor, I called a family meeting with the kids. We all sat down, and I told them the honest truth, "Mom's not ok. I need help." I must say, I'm very proud of my kids for stepping up to the plate.
We created a calendar: each of us chose a day each week to do our laundry, cook supper for the family, do the dishes, and clean the bedrooms. Friday was always "FEND FOR YOURSELF DAY." (NO ONE was going to cook on Fridays, so leftovers or Papa Johns pizza was the plan.) We sat down every Saturday afternoon to meal plan, and grocery shopped on Sundays. No one was allowed to complain about what each of us had decided to cook for supper on our allotted day. (We had a picky eater, and a vegan at the time! ) It wasn't always easy to eat chicken caesar salad every single Wednesday, or those vegan meals on Tuesdays, but I'm proud of my kids for making the effort. As an added bonus, they learned important life skills from that activity. They learned how to cook, plan their chores around their schedules, grocery shop on a budget, and to negotiate with each other. (Our eldest sometimes had to switch days due to work schedules.)
Maybe talking to your family will work too. I've always believed that honesty is the BEST policy. So talk to your spouse, your kids, your parents, in-laws, friends etc. Let them know where you're struggling, and how they may be able to help. You may be surprised at the results.
8.Limit news/media consumption- This point is soooooo important! Limit your screen time in general! Take a quick peek at your logged screen time.... how many hours did you put in? 4, 6 or 8??? Those are hours that could've been spent learning a new skill, chatting with a loved one, working on your health, or doing your favourite hobby. Hours scrolling through junk online is definitely not going to help the FND brain. The news in particular now a days is especially depressing. That negativity is contagious! If you MUST peek at the news daily, put a limit on how much information you're willing to take in, then put the phone down or turn the TV off. Listen to a podcast, music or an audio book instead. Chat with a supportive friend or family member, brush your dog, or play a board game with your kids. With FND it's so important to live in the HERE AND NOW. This illness can turn our lives upside down on a dime, so don't waste a moment more scrolling and increasing Mark Zuckerberg's bank account!
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