Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I travelled the world, best experience of my life.

Hey!

I've been around here for a while but for anyone who does't know... I was diagnosed with AS when I was about 15 and have battled pretty severe progressive arthritis from the onset. The are few days that go by that I don't experience intense debilitating pain. Tried almost all of the treatment options from biologics to NSD with sadly very limited success and/or relief. I haven't been here in a while and today I just turned 23 and I thought some people here may find this a slightly interesting/inspiring story. Or if anyone remembers me and is slightly interested in what I've been up to haha.

I had always wanted to study abroad but I felt like I was always too sick to take the risk. I had been working part time in jobs that suited my AS (where I am always moving) such as cafes and bars, and I saved up what I thought would be enough money. About this exact time last year I just made the decision to fly to Europe alone and travel the world. I spoke with my rheumatologist at the time and he said that the worst case scenario would be that I could just fly home if it's too hard.

I stayed in hostels around Europe and Asia for about 8 months and met so many incredible people and made a lot friends from around the world which I hope I will have for life. I ended up working in hostel bars in Portugal and Estonia. I had many many tough times with my arthritis where I just wanted to cry and give in, but I held on and I'm so happy that I did that. When I look back on the experience I don't really remember the pain, only the good times, friends, and experiences I had. It's by far the best thing I've ever done with my life and plan to do it again if I'm able

I'm still battling with this a lot.. at the moment it does dominate my life and my families to an extent, which is really sad. When I wake up, the first thing I do is grab a handful of either Tramadol/Codeine/Morphine pills and swallow them just to try take the edge off a little bit. It's not great to be doing this long term, especially since I'm still kind of young, but I'm positive that things can change for me in the future. I'm going to give Remicade a shot (which is the last biologic available to me), otherwise I guess I just gotta battle on and live with this intense pain and fatigue and do my absolute best in life.

Maybe no one will read this haha, but I thought someone might find this slightly interesting!

Cheers

Hi Seb International Traveler!

So glad you did this and so glad it was the experience of a lifetime!


Glad you still have hope for finding something that works...personally I think that's a great attitude to have. Good luck on the remade. and they are always coming out with new biologics and new treatments, so I think you are right to be optimistic about the future.

Would love to hear more of your travels.

I'm an armchair traveler and love to live vicariously through others.

Hi seb-
nice to see you again!
I am glad that you had such a good experience.
I am in a similar place with the pain levels.

Yes, things can change.

You did it and did not fall in the ditch. Risk That is what life is about, way to go. That experience will stay with you your whole life
ETTE
Darrel

Thank you. I hope things get better for you. It's hard to have such a fight and stay positive.

What a great reason for not hearing from you for a while. So glad the trip was really awesome. Also glad you are going to give remicade a go - if it works it will be so much better for you than opiate painkillers as it will be attacking the disease not just the pain. Good luck for the future, and hang onto those memories - of the good times, and also of your strength in coping with the bad times.

Seb - Yes, had missed you. Great to see you and great you made it to Europe - hope you ate ice cream in Paris...<VBG>. Sounds like a terrif trip and what an achievement - the memories will be with you always. Very happy for you.

Awaiting more details of yr trip - any photos ?

Hope the Remicade works out for you - those pain killers you are taking are not good long term, but you are aware of that.

Go well Seb, and take care - Molly

Seb!
So good to hear from you! I think you can see at least a handful of us are keeping track of you That is incredible what you've been able to accomplish - there's just no stopping you! I can only imagine this is just the start to even greater adventures in life. Well done!

Seb,
So glad to hear that you realized that dream!!! Wonderful to hear that it went well and you have many fond memories of people and places, not of pain. That's great news. Thanks for your update. Hope you can do it again some time in the future. Traveling is such fun, isn't it?

Thanks for all the responses.. You guys have all been so helpful and great to me in the past and I appreciate it so much.

When I was planning my trip I wanted to spend a lot of time living, travelling and working in Spain, Portugal and Western Europe. However, it was the places that I did not expect I would visit or enjoy that turned out to be by favourite/best experiences. I met a New Zealand guy around my age in a hostel in Budapest (Hungary) and after spending some time with him, he asked me if I wanted to join him and a few of his friends to a couple of music festivals in Serbia and Montenegro. I decided to go with him to these festivals and had the time of my life. I never thought I would travel to Serbia, but it was one my favourite place that I went. After a few drinks during the evening, me and my Norwegian friend would go around the festival talking to the local Serbians. I was truly amazed at how friendly and inviting they were towards me. I think part of this reason was due to the fact no one in Novi Sad (Serbia) had actually met a person from New Zealand before which I found quite funny. We actually spent more time hanging out with people we met than being in the music festival! I plan to go back to Serbia one day and visit a lot of the people I met during this festival. I had the best time of my life in central/eastern Europe. There were far less tourists, the locals were more welcoming towards tourists such as myself, and it is obviously so much cheaper than Western Europe!

I'm trying to figure out how to post some pictures to share with you guys

Seb