The travels and tribulations of going on holiday with chronic illness

Also known as how to travel (or not) with a chronic illness whilst immune-compromised, but I didn’t think that was a catchy enough title!

It was my birthday this week. Now, I normally go on holiday for my birthday. Just a short break. When I was first diagnosed with dermatomyositis (DM), at first I thought about not doing that this year. There are a lot of things you are meant to NOT do when you are immune-compromised. Being in close proximity with strangers who could be carrying any number of unknown germs in the small space of a plane is pretty high up there in the “inadvisable” column. But, then I thought, SCREW IT. Life has been pretty rubbish, and I want to at least try and do something fun.

Planning for risk

Look, I know it was risky. I have been incredibly unwell until just these last couple of weeks. The Imuran has been making me feel terrible with nausea and fatigue. But the specialist recently lowered my dose and things are now a bit more manageable.

So, I weighed up the risks, and I decided it was worth it. I wasn’t going to be totally reckless and go trekking in Kathmandu or eat street food in Kolkata.  I picked a destination close to home (2 hours flight). I picked a hotel right in the middle of where I wanted to be so I wouldn’t need to travel far. I picked a self-catering apartment so I could live on toast and weetbix if my nausea was still really bad. I packed a hat and factor 50 to protect from DM flares. I picked a hotel with an indoor and outdoor pool so I could avoid the sun and still get some swimming done. I got passes for the airport lounge in both directions to lessen the stress of traveling.

All I had to do was make it there, and not pick up an infection on the plane. Cue lots of hand sanitizer. I sit here writing this in the airport (delayed plane) – I am on the home stretch. Fingers crossed that I make it back to Melbourne and that I don’t pick up anything on the flight home.

All I had to do was make it there, and not pick up an infection on the plane. Cue lots of hand sanitizer.

When I booked this a few months ago, I had hoped I would have my partner with me, which would have considerably lowered the risk. But, never one to let things like that stop me, I decided to go ahead with the holiday alone, and I’m glad I did. It was great to get out of Melbourne, to see the sea, to get out of myself and away from the monotony of chronic illness.

What did I do “right”?

See above for the list of things I took into consideration. Sadly, life is never going to be spontaneous again. I can’t just hop on a plane, or a train, or dammit an automobile. Things take planning. Even doing something locally in Melbourne takes planning. How much walking will be involved? What happens if I need a break? What is my exit strategy if something goes wrong? You have to consider all of these.

The fresh sea air, cliched as it sounds, did me really good. As did some warmth and (SPF protected) sunshine. I loved getting out into nature and doing some gentle walking.

I planned, and I wrote down a list of things that could go wrong, and I came up with responses to all of these things. What would happen if I did pick up an infection? What would happen if I needed to leave early? I picked a flight at a reasonable time. I booked taxis.

Mostly, I’ve taken it really easy this last week. I relaxed on Monday post-flight, to give myself time to recover. I also relaxed mid-week and didn’t do things back-to-back. I limited my drinks to one or two a day. I was in bed asleep by 9 pm most nights. I took my damn walking stick. I tried to eat regularly, and well!

The fresh sea air, cliched as it sounds, did me really good. As did some warmth and (SPF protected) sunshine. I loved getting out into nature and doing some gentle walking. I really surprised myself with how I was able to push through and the sense of accomplishment at the end of my 3k walk in the forest was thrilling. I DID IT!

It was AMAZING to snorkel and see such beautiful fish (and dolphins!) in their natural environment. I used to be a strong swimmer, but this time I donned a life jacket and I let myself be pulled along by the JetSki out to the reef, and I grabbed onto the lifesaver and just floated. And then rested. I let myself be a passenger in the kayak and didn’t have to paddle. I didn’t do as much as I would have liked, but I did enough.

My cheeks are actually, I kid you not, sore from smiling. My face muscles start to shake and quiver if I smile too much or talk too much and today, I was so happy seeing birds and feeding Lorikeets that my cheeks are actually sore to touch from the muscle strain.

What did I do “wrong”?

Ok, let’s start with eating oysters and shellfish. Not something I am meant to do. But, really, I made sure they were super fresh. And they were damned tasty.

I got a bit sunburned in the kayak on Thursday. Not great. I had SPF 50 on, but clearly not enough. This was stupid and I really should have worn a long-sleeve shirt or kept my wetsuit on (we were advised to take them off for the kayak as it was a warm day). Lesson learned.

I fed wild birds. I let them climb on my arms and scratch my skin. This is a pretty big “do not do”. Maybe I am over-confident as a bird owner, but I could have easily, easily gotten a scratch infected. Or been bitten.

I got a pedicure. I found out recently that I am not meant to do this, funnily enough. Of all things – avoid manicures and pedicures. However, I think I can trust the upmarket spa I booked to use clean equipment and so far none of my toes have fallen off.

I got a little scared while snorkeling. Even this gentle activity had my heart racing and there was a moment when I thought, “I can’t do this. I am going to drown. ” This was silly as I had a life-jacket on, and a woman on a jet-ski moments away, as well as a snorkel-guide an arm’s-length away. But I felt weak and vulnerable, and afraid.

I am pretty sore and have needed to up my pain medication this week. Even then, I’m in pain.  I can’t lift my arms above my head, and my abdomen muscles are sore. I can’t really carry anything now, and I just feel weak and shaky.

I regret not booking an earlier flight today. I really am running on fumes right now. Today has been fuelled by sugar and caffeine – not the healthiest. I was ready to go home hours ago. As fun as it was to have a day wandering with the animals and meeting more birds, I am beyond tired. My hands are shaking and I will need to recover this weekend.

I am pretty sore and have needed to up my pain medication this week. Even then, I’m in pain.  I can’t lift my arms above my head, and my abdomen muscles are sore. I can’t really carry anything now, and I just feel weak and shaky. But I’m hoping this will pass and this isn’t a flare-up. Blood work will tell us more in a couple of weeks and I will go to the GP if I get worse, and confess my sins. Who needs confession?

You never know unless you give it a go

I’m not letting this illness stop me. I’m going back to work next year. I’m going to come off the steroids and get my body and my face back. I’m going to, I’m going to, I am going to…

It could have all gone horribly wrong, but it didn’t. And yes, a lot of that is luck. But a lot of it is also planning, and working with my limits. I’m going to need time to recover, but it was worth it. I made some happy memories. I did things I knew I would enjoy.

I’m not dying any time soon, as far as I know, but I do feel, more than ever, that life is too short. So, even if the sensible thing to do would have been to stay home in my safe little bubble, pacing my day, behaving myself, since when have I been the girl who lives by the rules? Since never, that’s when, and that isn’t ever going to change.