Traveling has always been one of my favorite things to do.
Ever since I was young, I’ve always enjoyed seeing new places, cultures, and things. From exploring America, laying on the beaches of the Caribbean, safari-ing (is that even a word?) through the African bush, riding camels on a Tunisian beach with Arabic speaking natives, eating my way through Europe or whatever other trips I can find myself on – I’ve always had a wander lustful heart. I always tried to soak up every moment and never knowingly took the situations for granted.
Having my mobility taken away from me for 3.5 years made me look at things in a different light.
When it first all happened, I had panic attacks so bad I didn’t want to travel. Actually, a trip that I took with my family to Florida in the Summer of 2013 ended up being one of the major points during my healing journey – but I didn’t want to go. I just wanted to lay in bed, not leaving my house, and do nothing.
It was during that trip I had the realization that I still could live an awesome life – despite any obstacle that was presented in my way.
Obstacle: Psoriatic arthritis?
Solution: Pacing myself and planning ahead.
Obstacle: Avascular Necrosis (aka why I was on crutches)?
Solution: Planning ahead, renting wheelchairs, and asking for help
The first few trips I took were sobering. I didn’t have the stamina that I had before (my 2012 flare up + disability leave) and had to rest a lot.
I remember going on a trip with my boyfriend at the time and I so badly wanted to keep up with him and his sister’s family. I was in a lot of pain, tired, and would call it a day fairly early. I had never been like that and it was something I wasn’t used to while traveling. That trip, albeit a great one, was a wake-up call to me that things may never be as they were before.
I had my airport routine down pat. (READ: Traveling with disabilities lesson’s learned)
I’d have someone drop me off, I’d check my bag so I wouldn’t have to worry about it, get a wheelchair and be wheeled straight to my gate. Someone would help me on the flight, they’d pick me up at my destination and then either take me to my next flight or take me to baggage claim to get my bag. Once I had my bag, I’d either get them to help me in a cab or go rent a car.
After a while, this routine seemed perfectly normal. To me, dragging my bag behind my crutches didn’t seem like such a big deal at all! I still didn’t have the stamina to walk around or be as active as I’d like – but at least I was confident in going places myself.
When I went out to Colorado to have my stem cell procedure done, I was so bummed because the atmosphere out there was SO active. I wanted to go hiking or biking or walk up to see beautiful views on the top of mountains. And to an extent, I did! I crutched over little rocks and wiggled my way to the top of more easily accessible viewpoints. And it was beautiful! I told myself that I’d be back and next time I’d be back to do all the active activities.
Since my stem cell procedure, I’ve gone on many trips. Mostly for work or advocacy things, but sneaking in a vacation here or there (like this one). But during my trips, I still paced myself. I didn’t walk as much as I wanted to and made sure to take care of me. It was always at the top of my mind.
But at the end of May/beginning of June 2017, my family went on the trip of a lifetime – 12 days to explore 3 of the 8 Hawaiian islands.
Up to this point, every trip I had gone on I’d have a twinge of fear that I wouldn’t be able to keep up or do the things I wanted to. But to be honest, that thought never crossed my mind going to Hawaii. I was so excited to see everything.
Every day for 2 months prior, I rode my desk bike hoping to build up my stamina to hike and see all the things I wanted to see. I knew I’d have to build myself up and then make sure to take care of myself when I was there.
My sister and I planned to make sure we had the right food to eat, I brought my Deep Blue, extra supplements and I brought pain pills just in case.
In Hawaii, we hiked up Diamond Head on Oahu, we hiked Waipi’o Valley (which is insane fyi), we hiked to see waterfalls, botanical gardens and more on the Big Island and in Maui, we hiked on the Road to Hana.
To a normally active person, these hikes may not have been a big deal.
But to me, they were huge. This trip was the most active I’ve been in 5 years.
I remember the first time I walked on the beach after my stem cell procedure (read about it here) and to be hiking around Hawaii 2 years later was so amazing.
The significance of what I was doing was never lost on me the entire time we were there.
I swear the whole trip I just kept saying thank you, mahalo, thank you, mahalo, over and over and over again in my head.
I tried to soak up every moment that I could.
At the end of the day, there are a few things I’d like to leave my chronically fabulous friends with as takeaways from my health journey (thus far):
1) Just because you can’t do something now, doesn’t mean you won’t ever be able to do it again.
As life goes on, our plans and goals adjust. The way we’re able to function and do things may need to be altered, but that doesn’t mean we can’t find SOME way to enjoy the things we used to love to do. Maybe it’s not today, but if it’s important to you, you can always find a way. If there’s a will, there’s a way.
2) Pace yourself and listen to your body.
I’m extremely fortunate to be able to walk again. I realize that some are not as lucky as I have been. But, just because I can walk doesn’t mean I can do ANYTHING I want. I still have to modify, I still have to pace myself. Sure, I hiked around the island, but I definitely had pain in the evenings. I doubled my turmeric every day and, eventually, I did end up taking pain pills in the evenings towards the end of the trip. It was a way for me to still enjoy everything I wanted to. There were a few times that I wanted to hike further, but I didn’t. (ok, so my parents forced me not too – but they were right and I was being stupid) We can still enjoy things, but need to PACE.
3) Plan ahead.
My sister and I always have to be careful of what we eat. So planning ahead, bringing food and knowing where I could go and get diet approved foods was really key for me. It helped me not stress out about it and made me feel comfortable.
4) Don’t be afraid to ask for help or support.
If you need help in the airport – ask for it! If you need to park in the handicap spot – don’t feel guilty! If you have to call it a night early, don’t feel bad doing so. You have to take care of you, first. Don’t worry about what others think – they don’t have to live in your body. YOU DO. Ask for help and take it.
5) Enjoy every little moment.
We take so much for granted. Things we wish we could do often cloud our minds. Instead, we need to focus on the things we CAN do and the things we’re grateful for. Make sure to remember this and try not to dwell on what’s lost or what can’t be. Focus on the here and now and what you can do. Embrace every moment the best you can.
During the trip, I did leave something behind though that I am a little sad about.
I’ve had the same pill-box for the last 5 years. It’s seen me through some pretty rough times and it’s helped hold my supplements to get me better. The little compartments have been falling apart and I knew I needed to get a new one. Since we were going to be gone for 2 weeks, I knew I had to get another box anyway. I bought a new one, filled them both up and took them both to Hawaii. Once I took all the pills in my old one, I left it behind.
It’s weird, but I felt a little sad doing so because that pill-box has been a part of my health journey. BUT, if I had to leave it behind, it was a great place to do so. In a place that I had the opportunity to be active in!
All in all, this trip was the best trip I’ve ever taken in my life.
Mahalo to my parents, Mahalo to my body, Mahalo to life.
The amazing sites we saw, the experiences we had and the personal obstacles I overcame . . . this trip will be EXTREMELY hard to beat!
Wishing You A Pain Free Day!