Hi everyone. Summer is here and we've moved onto a new topic for the next couple of months - holidays and travelling. This month's blog has been written by Mel during her travels to New Zealand. Thank you Mel for taking the time to write this for us.
Have you ever heard of the saying ‘yolo’, aka you only live once? Well this has recently become my motto (right or wrong) but it has brought me to where I am today.
Exactly two years ago today I was sitting in my hospital bed thinking, ‘Am I going to die?’ I’d had a massive lupus flare up and I was extremely poorly; I had blisters all over my body, my face was swollen, I could barely eat, and I was in so much pain even morphine wasn’t helping. My dreams of doing a ski season in New Zealand and travelling around Australia seemed like a world away. The only thing that kept me going through that horrible time was hope and my family - they were so incredibly supportive. They spent hours by my bedside, every minute of every day so I didn’t feel alone. My mum was always saying you will get over this and life will become ‘normal’ again - well as normal as it can be living with lupus. At that point I didn’t believe her, but here I am today, living proof that if you want something, and I mean truly want something, even lupus cannot stand in your way.
I was lucky that when I was in hospital my parents pushed for a specialist rheumatologist and offered to pay for me to go privately so I could get the drugs right and get back on track with my life. Fortunately enough, along came ‘Professor Davies’ a specialist professor in lupus. He was the best of the best and did a clinic once a week in Brighton - perfect.
I have been in Prof’s care now for two years and he has been a Godsend. He put me onto 150mg of Azathioprine, initially 40mg of steroids (now I’m only on 5mg) and 400mg of Hydroxychloroquine. Slowly I got better, it took time and my joints were still bad, but I was able to return to work very quickly and crash-save so I could live my dream (even though it still seemed like a long way away).
So after two years of hard graft at work I had enough money and I felt well enough to make the big step, hand in my notice, and more scarily tell prof that I was planning to head to New Zealand. Prof was, as always, an absolute star. He said, “No worries, I have contacts in New Zealand, I’ll write to them and you can see a consultant out there.” This was going to be pricey but that didn’t bother me, I’d rather accrue some debts and have the time of my life.
Anyway, enough of the boring stuff. Here I am sitting on a plane almost at Sydney. The journey has surprisingly been ok; 7 hours to Dubai from London, a few hours wait, then 13 hours to Sydney, then another 4 hours wait then onto Queenstown, New Zealand. Queenstown will be my base for the next five months. It is the adrenaline capital of the world; I plan to sky dive, bungee jump, white-water raft and most importantly, ski. Skiing has always been a passion of mine, I started at the tender age of seven and went onto do a ski season when I was 18 (before I was diagnosed with lupus, and life was pretty easy). The company I have been working for over the past four years organises skiing trips for schools so I have been lucky enough to ski four to five weeks a year for the past four years, so my passion has only intensified, hence my wanting to come to New Zealand.
I haven't really sorted out a lot for when I arrive in Queenstown (today.. ahhh), although I am lucky enough to have a friend from school here who has sorted me out with a shift in the restaurant she manages and all being well, I pass the trial and can do some work to keep the pennies coming in so I can travel more. I want to be able to ski at least four days a week, party a few nights and then travel around the South Island as much as possible…
…So we’re about the land in Sydney, I'm rather nervous as I have 6 months’ worth of drugs on me and a letter from Prof saying, under no circumstances are they to take them away. They are packed in my hold bag so I thought that they wouldn't necessarily be checked. However, I've just been told that when we arrive at Sydney we have to collect our entire luggage and go through customs then back through security… I mean come on Australia; we are not even staying in your country!!!!! This wouldn't normally be such an issue but with the drugs, a rather large suitcase, my skis, a rucksack with my ski boots in and another handbag it could be tricky.
My adventure is about to start and I cannot wait, I’m nervous, scared, apprehensive but most of all bloody excited for what is to come.
I’m going to write a blog as often as possible to keep you all updated on my journey and what has been going on in the life of the girl with lupus who wants to travel the world.
And to all of you that want to travel the world and live your life, I am living proof that it can happen with lupus. Don't put your life on hold because of the disease, fight it, do not let it control you and you will win.
You can read more of Mel's story on her blog at melgarnett88.tumblr.com/
We'll be continuing to share people's lupus stories in August. If you'd like to share your stories about going on holiday whilst living with lupus and any challenges this created, please email it to firstname.lastname@example.org