When I began seeing a physiotherapist who's actually familiar with FND, one of the first things she did was ask me to describe a typical day/week  in my life. At the time I was an operating room nurse, we typically work 8 hour shifts, but with staff shortages and heavy case loads a day can last 10 hours or more  with no breaks.  Of course shift work is a big part of nursing so I would describe working an evening into the wee hours  and then getting called back in the middle of the night to do an emergency case. I had dogs to walk daily, chickens to care for, weight to lose  at the gym, lawns to mow, gardens to tend, a house to  clean, groceries to shop for and put away, meals to prep, etc. You know the drill, it looks a lot like anyone's typical day/work week.  When I listed off the things I would usually assign myself for daily chores she let out a giggle and said, "That's a lot of stuff to do in a day." to which I said, "Well I'm usually like an energizer bunny."  I USED to be a very high energy person,  and in the early days of my diagnosis I was putting a ton of pressure on myself to keep up the same pace. NOT A GOOD IDEA.

This is where the mind blowing advice comes in. She described how with FND we have good days, and bad days. On our good days, we try to cram in as much as we can, because we feel disappointed about what we haven't been able to accomplish on the days previous.  But oh boy do we pay a high price for over doing it....we get the brain fog, the pain, the muscle spasms, the pins/needles, (insert any number of symptoms here!) all the more the day after.  She told me to list the things I would like to get done for the week, then break them up into 1 chore per day.  There was a caveat, no chores on the days when I had to work. This sounded absurd to me, I mean, come on! One chore a day!? WTF? 

If you've never met an operating room nurse, we can be lovingly described as Type A personalities. We like to get things done, and done to perfection. We like to keep our homes and yards immaculately clean, we keep every closet and drawer organized, our floors are so clean you could eat off them! It can be really annoying to our friends and family to say the least.  (I will say in our defense, having a Type A nurse taking care of you is awesome!!! We do our job the way the mafia takes care of business.... we take it seriously. ) So, needless to say, I wasn't exactly "on board" with cutting back on my usual routine. It seemed like I was being asked to  "give in" to this illness. 

She reminded me that with FND you have to find a balance. How much can you do before bringing on the tidal wave of symptoms? The work comes from trying to find that balance, and it takes time, and experimentation. Every person's limits are going to be different, and the limits may change over time. So I needed to find my balance, and start from ground zero. Zero chores on the work days, one chore the next day, and if I'm too tired to do any chores and I need to sleep for 14 hours, then I sleep.  As I discovered what I could do in a day without bringing about symptoms, I then could slowly add a chore more and measure the outcome. The process would take weeks to months, but I would eventually be able to plan my life around managing the symptoms. I also needed to take a hard look at my job. Heavily disturbed sleep due to being on call, shift work, long work days with no breaks and not enough staff just  wasn't going to cut it any longer. It was time to make a change so that I could see some improvement in my function.  

It's not easy to bring change into our lives, especially if that change has to come from within ourselves. I had a picture in my mind of what kind of person I was, the energy I had, the amount of productivity I could offer. FND made me take a hard look at myself, and question, "What am I willing to do to get better? What can I change? What can I sacrifice, or what am I not willing to sacrifice?" After asking myself these questions, I realized that here is a person, who knows what this condition is, and how to help me regain some of my function. It would be foolish, and stupid for me not to try what she was offering. 

Well, several years later, and I still think that she gave me the best advice. I still have symptoms, and I still have bad days, but now I prepare myself by managing my time with care.  I make a list of the things I would like to get done for the week, and I prioritize the one's that MUST be done, and the rest become "when FND allows." So my Type A personality has had to eat a bit of humble pie, and accept that sometimes my floors aren't mopped, or the lawn hasn't been mowed, or the chicken coop cleaning will have to wait until tomorrow.  I still cannot do any chores on the days when I work, and the day before I go to work I only do things that involve "preparing for the work day" like prepping my lunch, picking out my outfit, making sure I have gas in my car etc.  I still carry some of that guilt of not being as productive as I used to be, but I've just had to learn to accept that I'm working on that balance. 

So here's some basic advice for all of you FND warriors out there;

1. Find your limits. Start with zero chores and add one per day until you see how much you can do before setting off symptoms.  For every person this part of the journey is going to be different. If you have a young family, this may be especially challenging! But start somewhere, your health is worth it. 

2. Rest when you need to. I used to be a person who only slept about 6 hours a night, and functioned great. That girl doesn't even send me a postcard anymore! Now I'm in bed before my chickens most nights! 9pm is LATE for me! I also never in my life would take a NAP, now napping is a tool I use to function before an evening out. Rest can be either of those things, or it can be just putting your feet up for a bit while sipping a cup of tea. Rest can be soaking in the tub instead of taking that 10 minute shower. Figure out what REST means to you, and fit it into your day when you need to. It may only be for 30 minutes, but it can add hours to your ability to function.

3. Prepare ahead what you can for your work day/big events. What I mean by this is; brain fog is guaranteed to happen if I don't plan ahead by limiting energy expenditure, and getting enough rest the day before. One of the things I've noticed is that just having too many decisions to make for my day is a sure fire way to set myself up for a brain fog day.  If you know that you have to work tomorrow, or are going to a big function, plan what you're going to wear ahead of time, prep your lunch for work the night before, set the coffee maker on "auto brew", plan to get a good nights sleep the day before, plan to take a nap if you need to in the hours before the event. Save all the energy you can for the occasion, so that you can make the most of it. 

4. Ask for help. You've seen this one before, in my blog about grief. Asking for help is not a sign of weakness, as it takes tremendous strength to say "I need you." We each have someone in our lives who wants to do something to help, so reach out to them.

5. Listen to the advice given to you by your healthcare provider with an open mind. If I were a stubborn person, I would've resisted the idea of slowing down my pace, for fear of looking weak or accepting defeat in my war against FND. My physiotherapist was asking me to do something I never even imagined trying; doing less. Sounded pretty crazy to me! Having an illness means we have to be open to looking for new opportunities to get better. We may think that a treatment mode, therapy, exercises, or medication may be useless. The truth is, they just might be. Or maybe they'll help. We have a 50/50 chance of success, but only if we try. I'm not a gambling person, but I'd bet on odds like that.

If you've read this far, thank you! I'd love to hear about what brain fog is like for you, and how you've navigated it. Feel free to comment below!