My journey began in about 2015. I was living on Vancouver Island, working as a travel nurse, working out regularly, hiking for hours every day, just enjoying our newly acquired "empty nest." It started as quietly as any other age related health issue... my feet began to go numb when I was working out. The trainer said "Try new shoes, maybe yours are little tight in the front. " I bought the new shoes, paid lots of $$$, the new shoes didn't help. 

Then I began experiencing cramping in my lower legs, particularly on hot days when hiking. I thought, "I need to stretch more. I need to hydrate more. I should try electrolyte drinks instead of water. " I stretched, I hydrated, I tried the electrolyte drinks. None of those things helped.  Around the same time I began feeling like I had a belt cinching around my ribs, like someone was squeezing my ribcage. The muscles in between the ribs would spasm and cramp. Being a bit of a "top heavy lady" I bought a new bra. The new bra didn't help. 

Then, we moved to the Okanagan, and for the first time I had the joy of experiencing those very hot, dry Okanagan summers all of those tourists from Alberta love so much.  The symptoms came on like an avalanche.  You know when you're in the car, and your favorite song comes on, the one you know all the words to so you sing like you're in the band? I could no longer remember the words to most songs I loved. Then I couldn't remember words in general, then the words became slurred.  Then I stopped making conversation because it was too embarrassing to lose my train of thought midway through the topic.

By this time it's 2018, and I'm becoming increasingly forgetful, to the point that it's not safe for me to drive some days. I have non stop tremors in my hands, twitching movements of the head and neck, trouble understanding what people are saying. (Words sounded like gibberish at times.) And the fatigue... OMG it was like an exhaustion I'd never felt before. It was as though I was wearing a cement suit all the time, every movement became an effort. I could sleep for 14 hours straight and not feel rested. The brain fog would come on in a wave, and it felt like I had been drugged.  All of this time, I'm going to our local medical walk in clinic in search of answers. All to no avail. 

Then I began losing my balance, my legs were giving out regularly. I had a fall and split my forehead open, I couldn't safely navigate the stairs in my home.  I was thinking I may need to get a cane or a walker at one point. Oh, and lets discuss the pain.... at first my legs had that "restless leg" feeling most nights. That turned into a "bugs crawling under your skin" constantly kinda feeling. Then the sensation of pins and needles would join in on the hands and feet, and THEN the real pain would begin. I would (and still do) get the feeling like my bones are frostbit. Anyone who lives in northern Canada or the prairie provinces knows what I'm talking about. The pain you get when skin is exposed to -40 wind-chill kind of pain. Except it was  in the long bones of my arms and legs.  

Meanwhile, I got the familiar phrases like, "I'm sure its just stress." "Your test results are normal." "Its psychological, I can't help you."  You know, the whole sack of bull#$%^ .  I went from being a person who goes to the doctor once a year for a normal check up, to someone going in on the regular in search of answers. I just know "Something isn't right." I ask if it could be Lyme disease (since I hike in the woods all the time). "Nope that's not possible, unless you can tell me you had a tick in bedded in your skin for at least 3 days. " There wasn't  even an offer to check for Lyme disease. I asked "Could it be MS?" No offer of investigation was forthcoming so I paid for my own MRI. 

Finally, I was given a Nurse Practitioner as my primary care provider, and she referred me to a neurologist who gave me some answers. Then I started going to physio, hired a kinesiologist, found a job that doesn't involve shift work and mandatory overtime, and generally started putting my health first.  Let me tell you, it's been a long few years of working at it to regain some of what I lost, but I'm getting there.  FND requires you to be selfish. Now  I'm a mom, a wife, a fur baby mom (doodles and chickens), and a Registered Nurse. Being selfish isn't exactly in my "vocabulary" so to speak.  But when I started feeling like I was losing my independence, my ability to think clearly (thanks a lot brain fog...) and began to feel like a shadow of the person I used to be...it was time to get my shit together. 

Working to regain what was lost to FND is A LOT OF WORK! We have to put the time and effort in, and refuse to give up! I  LOVE hiking, and would spend hours in the great outdoors of British Columbia. Some people go to church, I go hiking. Nothing was going to take that away from me, certainly not FND. So, I just hike less, or for shorter periods of time, or early in the morning before the heat of the day begins. I also love to garden, but gardening in the Okanagan heat is a recipe for days of debilitation for me. So, I only go out in the garden as the sun is coming up, I wear a hat, drink ice water, and keep a wet towel around my shoulders all the time when I'm outside. And I try to get my gardening done by 9am.  My daily "to do" lists now only consists of 1 or 2 things, not 20.  I've looked at every aspect of my life with that kind of willingness to adapt. What can I change that will allow me to do the things I love? Yes, the pain still persists, yes the fatigue can get the better of me, and of course the all encompassing brain fog (OMG I HATE THE BRAIN FOG) can come on at any time.  There are still days when I won't get behind the wheel, so I stay home. There are times when I am so exhausted that I will sleep for 14 hours straight, get up, pee and then go back to bed.  I have had to tell my hubby (who works away) that I don't have the mental energy to talk on the phone due to brain fog. So then the conversation is limited to "I love you, have a good sleep hon, bye."  My gait can still be off, and at times my leg will give out, so I just walk slower. There are nights of endless pins/needles, muscle spasms, frost-bite bone pain, that are so bad I cry myself to sleep. But I refuse to let FND stop me from doing the things I LOVE to do. Besides, tomorrow is a new day, filled with endless possibilities. Perhaps it will even be a day that will bring a reprieve from some of the symptoms.  

FND does not define me. FND will not defeat me. I AM AN FND WARRIOR.