What do you wish you knew when you were first diagnosed with your illness? I ask that question often because I've learned so much over the last decade and wish I had just half that information when I was first diagnosed with Crohn's disease. It would have made my life so much easier and I would have made many different choices in life. So, what do I wish I knew when I first found out I was suffering from drug induced lupus and neuromuscular disorder? The first thing I wish I knew was that these symptoms would drag on for a year. The other thing I wish I knew, travel is not the same. I just returned from a wonderful trip to Paris with 4 friends. It was truly a trip of a lifetime, if you just ignore the severe fatigue, brain fog, and general memory loss. I just knew this was my time to shine. I once spoke French quite well. I knew my capabilities were nowhere near where they once were but surely, I could at least be helpful. The truth of the matter-I disembarked in Paris and could barely remember how to speak in English much less a language I haven't spoken in years. Je suis fatigue?
The first mistake I made on this trip was not buying the first class ticket. "But it's so much more expensive!" That's what I told myself when buying the ticket in the first place. If you can afford first class, buy first class. I slept very little and had a glass of wine instead of water. One would think this was my first go round with an autoimmune disease. The lack of sleep, water, and ability to stretch out really took its toll. Of course I've suffered from brain fog before but this was a bit extreme. Google was only a fingertip away and I didn't even bother to check it. Google clearly tells me to sleep, drink water, and get up and move while on a plane. C'est ma faute. Fortunately, one doesn't need a clear mind to enjoy Paris. It's a beautiful city filled with croissant, wine, and Chanel. How do you go wrong? The first way you can go wrong is not listening to your body. This is the other thing I learned the hard way. I was determined to get in a Paris run. It's always been a passion of mine to run the city I'm visiting. It's a beautiful way to see the city and experience the run community. While I've come a long way from last year when I couldn't walk, much less run, I still don't have the capability to do too much exercise and if I go a little too long or too hard, I break down. I've known this since I started running again. Just a bit too much time and intensity means that I'm down for a few days. I got lost in my Paris run and ended up doing 7 miles, a short jaunt for the pre-DIL me but a big run for post-DIL me, I should have known better. We followed that up with walking Champagne for the day-and I mean that. We didn't know you need reservations in November (you do) and walked the city until we found the one place who could take us for tastings. By the way, Pommery is an experience and well worth the visit. It's an art gallery in a wine cellar and the tour is by far the best I've experienced, it just happened to come with a lot of walking. 20 miles total for the day. Well, I guess I won't do that again.
It's easy for a girl to get lost in the beauty of Paris and being with friends, healthy friends, and certainly that's what makes travel so much more difficult for the chronically ill. What? Am I sick? The flight back really compounded the lack of sleep, water, and copious amounts of wine. Maybe even, just a little bit, the extreme walking. Garmin tells me I walked 40.6 miles during that 4 day trip. I guess I can admit that isn't the smartest thing to do when you've been tackling severe muscle myalgia and inability to exercise for the past year. By the time the plane landed, I was in tears. My muscles were knotted up, legs swollen, joints on fire, and I had nearly lost use of my left leg. To make matters worse, the brain fog over 4 days proved to be a small incident compared to the next 4 days. I was wrecked and can assure you, this is a type of jet lag I've never felt before and hopefully never will again. This chronically ill gal will not be missing the next trip but next time, I know better than to pretend I'm a normal, healthy person. Upon my return, I received another diagnosis of fibromyalgia. As always, I'll be following up and doing my best to understand how to get help myself live my best life. I know that travel exposed my weaknesses and like all chronically resilient warriors, I'll work to strengthen those and do what's right, next time. I'm not missing out on life because of my Crohn's or the recent drug reaction or the possible fibromyalgia. Not one bit of it. So, next time l will order cases of water for the hotel room, get that extra leg room, and rent a car. Did I hear someone say Berlin at Christmas?