I am back from “vacation”, which I quickly realized did not feel like a vacation at all.
That sounds so negative to start the post, but I had mixed feelings about the trip. Don’t get me wrong- I absolutely loved the trip, loved the experience, the people I travelled with, the weather was pretty good, and the opportunity itself was amazing. I am so grateful I got to do it, I just almost wished I got to do it when I was stable.
What do I mean by stable? Well currently it was revealed literally two days before I left for my trip that again my body was not responding to the Cortiment steroid and Imuran, and in fact I was starting to feel worse. I was bleeding more, I hadn’t had a solid poop in days, and I could not shake the nauseous feeling off. No amount of Gravol seemed to work. So I knew the risk of going would mean I would continue fighting all of this until I got back to discuss my new treatment options (Humira or Remicade now). But I had been talking about this trip since the summer, we had booked everything before I got sick, and I just wanted out. So off I went.
My flight there and back sucked. My body just refused to cooperate with me and we left on a redeye flight. I puked just before we left for the airport and then spent all night rushing to the washroom and trying to knock myself out with Gravol so I didn’t feel the pain. But I made it there okay and luckily our first day we didn’t really have anything crazy planned so we ended up just taking it easy and going shopping, which was fine for me. I always had to make sure I knew where a washroom was. I had taken half of an Imodium tablet (talk to your doctor first to make sure you can do this as well) to kind of slow down my bowel movements, where I went from going 13 times a day or more to 5-6 times. This definitely made things a little easier, because when you are unstable your bowels are just so unpredictable.
The next 5 days were spent on just all the Disney parks at Disney World. This is when my body and I really started to wrestle with each other. The first day was a bit jam packed because we did Epcot and half of Hollywood Studios, but after that we quickly learnt our lesson and started to slow down a bit. Everyday we woke up around 7 am and we were out all day, coming home around 9:30-10 pm. I couldn’t even fathom how people could do things after spending a day at a park. Our Uber drivers often asked if we had any other plans for the evening, and I would just laugh on the inside because hell no, I need sleep. I would sleep 9-10 hours and still feel like I only got 5 hours of sleep. My energy levels were all over the map, one minute being ready to go to the next being a narcoleptic and sleeping standing up in a line for a ride.
This only got worse on our last two days, which were spent at Universal Studios. The first day there was okay. I got intense stomach aches and had to sit out one time or just sit in general, but the last day. Oh my lord. My body was revolting against me and punishing me for pushing it. I honestly don’t know how I got through that day. Or how I got through my flight back home, which progressively got worse the closer we got to home. You guys, there was a point where I didn’t even make it to the washroom! My body decided we needed to go right then and there as I stepped foot into a washroom. I know this is TMI and for people who know me, I apologize, but alas this is my life now.
So here is my advice for people who want to travel to Disney and are unstable:
- Get travel insurance and make sure it covers unstable pre-existing conditions because some may cover pre-existing conditions, but not if you’re unstable. I never had to use it, but there were a couple of times where it could have gotten worse and I may have had to. I went with Belair Direct, which goes through Tugo and for the 9 days I went it was $23 CAD for a single trip travel emergency medical insurance for 2 million dollars AND Unstable pre-existing condition coverage for $250,000
- Stay hydrated. It is one of the top reasons why we end up in the hospital and when you are on the go all day it really takes a toll on your body. You’re even allowed to bring your own water bottle, which is what I did!
- Bring snacks. If you’re like me and have a hard time stomaching food, snacks are a good way to go, especially snacks that you can munch on through out the day. I did not do this as well and often struggled because I found myself in this endless cycle of being starving one minute, eating half my food, feeling sick and not being able to even just smell food without wanting to puke, to then being starving again. I wasted a lot of money eating only half my meals, when it would have probably been better to just bring snacks. (I did buy Ensure for the mornings when I was really sick and that helped a lot. They even let me take it in the parks).
- Know your surroundings. Know where a washroom is at all times, because you never know when it will hit you. It sometimes seemed all of a sudden, and I would find myself kneeling over on the ground in the middle of the park or a line for a ride.
- Know your body. Know when enough is enough. You may not look sick, but trust me you feel it. I fought a lot of other symptoms like body sore, being really cold, nauseous, headaches, light headedness, and bad stomach/bowel pains (I even publicly cried over them twice) to name a few. Sometimes you’re just going to have to sit out and that’s okay. I never looked at it like I was missing out, just that hey, maybe that would have been fun but I can’t really do it and that’s okay. I always gave myself a pat on the back for getting through a day, no matter how hard it was.
- Travel with people you know and trust. It makes the experience that much better. I couldn’t have asked for better patient and loving friends. They never made me feel like I was slowing them down, never made me feel ashamed, and always checked in with me to make sure I was doing okay. If we needed to go to the washroom, they were the ones guiding me. If I needed a break or to sit down, they would help me find a seat even if that was just a side walk.
- Pack extras! Whether thats extra underwear, pants, liners for the ladies (it really helped me), ect. Bring extra. Avoid further embarrassment and allow yourself the opportunity to kind of just move along with your day instead of having a huge ordeal. It makes you feel a lot better too. Things happen! But when you’re prepared it makes it so much easier.
- Get rest. Seriously. This is key. There is no way I could do half of what I did if I didn’t allow my body to rest up. Although I only felt like I got 5 hours of sleep, I know if I did only actually get that much I would have been a wreck. Be kind to your body! It’s being crappy, but it is trying its best.
Now I did cry a bit on this trip. Once after puking my supper immediately after I got back from Animal Kingdom, twice for my intense stomach pains that were both public because WTF that had never happened to me before, and a couple shower cries from frustration. This was the same group of girls I travelled to Europe with, and what a difference. I guess you don’t really notice how sick you are until you’re tested and start comparing to how things were before. I know a lot of people saw my pictures on social media and commented on how good I looked and how much fun I looked like I was having. And I was having fun! I just didn’t feel good. I didn’t feel like myself. I constantly had inner battles in my head asking if I could really do this, could I handle this, was I strong enough, could I eat this, etc. I lost weight again because I was so nauseous the whole trip, and most of the times waiting in line was me talking to myself that I was not going to poop my pants on this ride because my bowels of course would start singing halfway through the line. And again, I was just really tired. Tired physically and emotionally. I don’t want to be sick anymore, and just when I think we are on the right path, I end up feeling worse then I started.
It’s insane to think I went from being told that I wasn’t sick enough to see a specialist right away to now being told that they couldn’t get my body under control fast enough. I went from mild to moderate to moderate on the higher spectrum in weeks. I went from lower dosages of medication to steroids, immunosuppressants, and now biologics because my body just can’t seem to handle anything. I feel so out of control right now and this trip really highlighted this for me. That makes it that much harder to love any situation you’re in because you always feel like you’re anticipating for the worse and when you do start feeling better and some sense of control, things get worse again in a matter of seconds.
I think I may wait to vacation again after I’m more stable. Or at least until I think I’ve better embraced my new life. My misconception was that this would get me away from myself, when I think it did the opposite. I think it made me realize how sick I really am and how much I need to start gaining some more control again.
But again travelling unstable isn’t impossible! I don’t think I would change anything about the trip. It taught me a lot and was still an amazing experience. And now I know better for next time! But maybe next vacation I’ll try to make it something a little more relaxing…. like maybe just lying on a beach all day instead of walking all day.
But I ranted long enough. Happy travels to anyone else who is unstable! Once I figure out my new treatment plan, I will update you all!