Travelling with Ichthyosis (and other medical conditions).

This post is about travelling with ichthyosis, but I guess it applies to many other medical conditions.  I am writing it as part of the Problogger and Virgin Australia competition. I hope it's useful. (It's not sponsored.)

I don't have many regrets but one is not travelling earlier. I never saved enough, and always feared it would be detrimental to my skin - which is affected by rare, severe and painful disorder called Ichthyosis. Now I've been on two 6-7 week overseas trips, and want more!

I realised that just like with daily life, travel is not going to be comfortable every day. It's definitely a period of getting out of routine and comfort zones (like showering in a public airport shower - never thought I'd do that but so glad I did as I was comfortable for my longhaul flights!), and my skin changed with the cabin pressure, various outside temperatures and busy schedule. But I couldn't let Ichthyosis stop me. I want to see the world!

I wrote this Facebook status when I was in London at the Generator Hostel - the coolest hostel ever. It was such a proud moment.

I don't usually let anyone see me before I have had a morning shower.

You see, I don't wake up looking like the photos I post here, or how you see me in person. I must put my face on to greet the world - or more realistically, take my overnight face off. Ichthyosis means the skin renews a lot overnight and I wake up with a very scaly, very hard to move face. Maybe like Botox meets facial peel. Hideous.

So it's been a big feat for me to forgo some of that privacy these past six weeks - staying in hostels and with other people. And it hasn't been so bad. I still don't look at people in the eye before I have had a shower but I can manage to go out of my room into the bathroom past people.

Hurdled jumped.

When I was in London in May 2014, I met up with Julie, Danny and Jack again - five year old Jack has Netherton's Syndrome (pictured above). We talked about travel - Julie said she couldn't believe I was travelling on my own around the world for almost two months.

I told her I wished I'd travelled earlier - when I was younger. I've done two overseas trips in two years. Yesterday marked three months since my most recent trip, and two years since my first trip. As I wrote when I returned from my last trip, it's so important to plan ahead and be proactive about communicating your needs.

Julie said she's worried about how Jack will go travelling. She and Danny are reluctant to take him on the London tube because it might be hot. I reassured her that the train is not stifling, especially when I was there - the weather was quote cold! I also suggested they start small with international trips - maybe catch a train to Disneyland in Paris, or a European country close to the UK. Europeans are so lucky with the proximity of surrounding countries. Finally I said to Julie that she could ask Jack's dermatologist if there's a dermatologist at the holiday destination they can connect with. I said to Julie that while I know she wants to make sure Jack is comfortable at all times, there will be times when he might have to wait a little longer for his bath.

After that conversation, I had a think about some of the other things I've done to cope with my Ichthyosis during travel. Julie said she'd love to read my advice, and I'm sure it will be useful for other patients with Ichthyosis who want to travel.

Purchase additional travel insurance.

This is a little more costly but make sure you get travel insurance to cover your additional medical condition. I asked around for insurance providers that do this and a friend who'd had cancer treatment before her last trip to America recommended me an insurer that was more affordable than my bank's insurance. I went with Defence Health - but you should do your research. The basic travel insurance was $100 for my trip - and the cover for my Ichthyosis was an extra $500 - I paid $515 to remove the excess. I was told that travel insurance for America is costly because of their healthcare system, so if you're travelling to other countries, it might be cheaper for you. I didn't claim on my travel insurance for either trip but I felt confident that if I did get sick, I would be covered. The great thing about Defence Health was that my details were on their system from the first trip I took, so I didn't need to provide extra documentation. Had I gone with my bank, the excess would have been $5000 for an existing condition - even if I got sick with a tummy bug.

Pack all the medications and creams you need for the trip.

This ended up a little heavy for me as for seven weeks I took 10 kilos of paraffin cream. But I was worried that I would not be able to get the equivalent overseas at an affordable price. Next time I travel will probably be shorter so I won't need to take as much. My dermatologist wrote me up a script so I could buy double the amount of cream I usually buy per prescription - this meant I would save some money as I'd only pay for one script.

I also made sure I took two packets of antibiotics, enough antihistamine and painkillers to last me few trip - and separated a few of them for my carry on luggage. I know I can get painkillers overseas but my skin has reacted to medications and I don't know the ingredients of some of the American medications so I'd prefer to carry a trusted brand with me.

You can also speak to your doctor about equivalent medications and creams at your holiday destination and purchase them when you arrive.

I also took a travel sized shampoo bottle full of washing powder so I had some when I arrived at my first destination and then bought a bottle of sensitive stuff which I carried around for my trip. I also took a pair of latex free gloves in case I couldn't easily find a packet in my travels.

Well before my trip, I purchased over the counter stuff from discount chemists, which saved me money. I'd buy a couple of things each pay.

Get a letter from your doctor and contact the special needs department of the airlines.

My dermatologist wrote a letter which I forwarded to the airlines and I also got my dermatologist to complete relevant medical forms as well. My doctor explained what Ichthyosis is, outlined the type and quantity of cream I would be carrying - plus the purpose of the cream, listed the other medications I'd have and their purpose, and also requested extra legroom to allow me for increased movement on long haul flights, and they also asked for extra water on the flights. It was also stated that I don't have fingerprints which might make security checks hard.

The dermatologists requested I got extra luggage space included for free - most large carriers allow included luggage for medical equipment - and so most airlines I traveled with for the international flights viewed my creams as medical equipment. I just paid for each case I checked in through the domestic flights in America.

Contacting the airlines with my medical details proved to be difficult this time around and I ran into some issues at the airports - that's another story for another blog post. All I can recommend is to persist, tweet the airlines if you have no luck, and visit their office in person with your documentation if phone and email contact fails.

I printed my medical letter and laminated it to show to staff at each airport. I'd show it at the check in and then the security. Most airport staff were fine with the letter but it was very difficult with the Transport Safety Staff in America because of the amount of paraffin I carried. Air New Zealand was AMAZING but some other airlines were tricky to deal with - perhaps due to the cultural barriers around disability. Here is my experience with Air NZ. Locally, Virgin has sought more information about my skin before I boarded.

Here is my medical letter. I am sorry for the inaccessibility of the document - it's a scanned PDF. For those using screen readers, it contains an explanation of my condition, medical recommendations as well as a list of medications I took, and the duration of the trip,  and the trip dates. It obviously had the doctor's name and signature, plus the letterhead on it.

Drink lots of water and eat well.
Travel means amazing food for me - I want to try everything! I ate some amazing food while away, but it was very rich. I tried to have vegetables with each meal and when I couldn't, I would buy a vegetable smoothie. I'd also try to start my day with some fruit.

The air conditioning and heating dried my skin out so I made sure I drank enough water; in Chicago, it was so cold outside and my hostel room was so toasty, but I didn't have a fridge or tap in my room so I'd forget to drink water when I was there. I bought a big bottle of water to keep in my room to stop the dehydration.

Relax on the plane

I wore soft clothes on the plane. Not pyjamas but soft, stretchy fabrics like I would at home in the evening. I took fluffy socks too. And I also had a disposable cloth in my carry on so I could wash my face when I woke up. It was VERY comfortable.

Movies were great, as were books. I prepared my body for a jam packed holiday ahead on the plane trip.

Plan for rest.

Holidays can be tiring. I was gone for almost seven weeks last year and there were days I just wanted to be at home watching TV. I tried to get rest by going to bed at a reasonable hour when I could, breaking my day into three sections and only doing activities in two of the sections, and making sure I ate well.

I was sick for almost a full week and getting over a cold and chest infection away from home was hard. I can't take cold and flu tablets because they affect my skin. I didn't want to go to the doctors until I was almost dead (because travel doctors cost a heap - and I didn't want to have to explain my skin to a new doctor). I was coughing up infected mucous and felt terrible so I took antibiotics and went to the pub to have two brandy and ginger ales a day. I was lucky to be staying with family when my cold and chest infection, so I was able to rest in bed and had access to lemon and honey. I also grabbed berries and chicken soup from the fantastic healthy fast food stores in London (Marks and Spencer Food, Itsu and Eat).

Network

Travel is a great way to meet people, and of course, blogging can put you in touch with people all over the world. I am so fortunate to have built a big network of people affected with Ichthyosis. I made the time to meet people with my rare skin condition. I met so many people with Ichthyosis in America and England - it made me feel less alone and we all learnt from each other.

Here is Matthew, Michael and Aurora who all  have Ichthyosis - I met them in Chicago. Such beautiful kids.

Read about who else I met here.

Improvise.

I had a hard time adjusting to the different shower water around the world - the water was either hard or soft and the water temperature in each hotel room differed. I hate washing my face with cold water - and when I was in San Francisco, the water was tepid. So I asked the hotel staff for a kettle so I could boil water to wash my face.

I also had very sore skin in Paris and I didn't have access to a bath. I did have a stove a saucepans though. I bought a pack of salt (it was hard to ask for it in the supermarket when I didn't speak French - it's 'sel', if you're stuck in Paris) and some microfibre dishcloths so I could do my own dressings. I boiled a saucepan of water, added a liberal amount of salt plus two cloth, let the water cool, and then used the cloths as compresses on my legs. Infection healed in a few days!

It's not going to be easy travelling with Ichthyosis. You'll encounter lots of questions and stares (when I encountered stares in Paris and Milan, I just smiled and said "bonjour" or "bongiourno" which was met with a polite greeting back), need to explain your condition to many companies, and you won't have your creature comforts of home. But it will be so much fun and so worth the preparation. And don't forget, there's always the online support groups where you can ask for localised advice.

And don't forget to have fun!

Happy travels! Do you have any trips planned? Any tips?

Three tips for exploring museums and art galleries.

I went to some amazing museums and galleries in Milan and Paris, and a few in the UK too. The history they hold is breath-taking. I loved learning about how people lived, and seeing iconic artwork. It's also interesting seeing how others take it all in - lingering looking, or quick photo snaps to look at later. How lucky was I to absorb such culture and history!

I saw The Duomo in Milan – dating back to the 1300s. How the heck did they build such an enormous, detailed building with the technology at the time?!

I loved that there was a small fee for taking photos - an honesty fee. I think it was two euro - and the staff wanted visitors to take photos and share them.

 As I took this photo, about 50 others stood before the window taking the same photo.

I went to the National Museum of Science and Technology: Leonardo Da Vinci in Milan – filled with planes, ships and cartography. I was in awe of how innovative inventors and designers were centuries ago and also how technology has progressed.  There were some great displays of modern technology that was very hands-on for kids.

I also toured The Louvre (huge!), Musee de l’Orangerie (beautiful paintings by Monet), and the Fragonard Perfume Museum in Paris. I think I saw the museums of music and ballet too, but only went to the ballet gift shop. 

Selfie with Mona Lisa.

 It was Tuesday afternoon at the Louvre and it was so busy!

 Surprisingly, the perform museum didn't smell as amazing as I imagined.

No photos allowed inside Orangerie - a pity because it was filled with Monet. Amazing.

And on my most recent trip to the UK, I visited Inveraray Castle in Scotland, the outside of the Tower of London, the Victoria and Albert Museum and Cardiff Museum in Wales. There may well have been others but I was feeling pretty unwell in London and Cardiff.

I was SO amazed at the beauty of this castle. It's huge and so detailed. I wanted to go inside. I think Downton Abbey is filmed there.

 A friend and I sat outside the Tower of London. In hindsight I should have gone inside!

No photos allowed inside the Victoria and Albert Museum. Maggie and I asked a stranger to take this one outside.

The European museums and galleries were definitely more populated than the ones I visited in the USA. 

Here's what I learnt:

Book ahead online to avoid queues

I queued for almost an hour in Milan and Paris – one time I queued longer than I spent looking at the art! There were often two queues – one for prepared people who booked ahead, and one for people who just turned up. The first queue moved very fast and I was envious! I will book ahead every time now. 

I also recommend that you take water and a hat – it can be really hot waiting in a queue, no matter how long you have to wait! I waited for ages in Milan and think I got sunburnt!

Also, if you don't book online, at least check the price before you go. I didn't end up going inside the Tower of London due to the price! (I'd rather see a show on West End!)

You can’t see everything at once.
I was amazed with how big the museums and galleries were! The Louvre was huge! (It’s over 60,600. And they are very busy and crowded – many are top tourist destinations. And so it was impossible to see everything in a limited time. 

When you book your ticket online, check out how big the museum or gallery is, look at the exhibitions and plan what you want to see before you go. Collect a map at the entry (or print one before you go) and mark your route. And if you don’t see everything you want to see on your first visit, it’s a great reason to return! (And museum and gallery exhibitions change – so you might be lucky and see something you missed out at a later date in your hometown!)

Save your money for the gift shops.

I measure the quality and my enjoyment of a museum or gallery on the gift shop! If it’s stocked with amazing art and craft, I am happy! You can often get replica prints in frames or on cards, magnets or scarves from gift shops. And they stock an amazing range of jewellery – which never weighs much in your suitcase on the trip home. 

(I bought a cute brooch from the V&A giftshop – online though. It's a design by Cilea. 

I thought I’d run out of money close to the end of my trip. The postage was a killer, but I love this brooch so much. 

I bought a cute pressed flower necklace at the castle in Scotland, and some gifts in the museum in Cardiff. 

When I was in Chicago, I found a gorgeous mosaic plate that was a bargain – though it was too big and fragile to carry around the world with me (or post home) so I do hope it found an appreciative owner.

Have you got any advice?

Bought anything special from a museum or gallery store?

Travel tales: Degas House, New Orleans

It’s just over a year ago since I was in New Orleans. Gosh time has flown! I want to blog more about my trip – let’s hope I can remember the details! I saw so much.

I went on a guided bus tour in New Orleans – it changed my perspective of the city. I loved doing these short tours as it gave me ideas for what I wanted to see later.

As the tour bus was going up The Esplanade in New Orleans, the guide pointed out French artist Edgar Degas' house, which is now art gallery for the public to visit.

I was so excited, because studied Degas at school and also saw a few of his works at the MET in NYC in 2012.

And so after the bus tour, I walked – many, many blocks to the Degas House. It was hot and so by the time I arrived, I was redder than usual and in need of a cold drink. The staff – Degas’ relatives – were very welcoming. And I learnt so much during my two hours there.

Degas House is located at 2306 The Esplanade - on the corner of North Tonti Street New Orleans. There are two houses on this block - they make up a gallery and bed and breakfast. The two houses were once one large mansion but in the 1920s, the house was cut in two.

Edgar Degas had Creole heritage. He went to New Orleans to live with his uncle in the house at The Esplanade in 1872. He was provided with a bedroom which doubled as his studio.

At the time New Orleans was in a depression, and perhaps Degas was too. He had an eye condition. He would paint his cousins, depicting looking introspectively - their eyes looking at nothing in particular. This was thought to be a symbol of his own fate for his sight.

New Orleans has brilliant, bright light. To protect his eyesight from the light, Degas painted all of his New Orleans portraits at the house.

His five months in New Orleans was where he found himself – an awakening of sorts. He returned to Paris in 1873 to create the paintings we are familiar with.

Today, Degas House is a guest house - adorned with Degas' paintings and decorated to reflect the period in which Degas stayed in the house. It is so beautiful – gorgeous 19th century furniture, low ceilings and artwork everywhere. There is a sunny courtyard – a little eerie after seeing a painting he did.

His studio is not a guest room. It has his wardrobe and bed. A palette with dried paint sits on a desk. Chairs are arranged to show the way he would have studied his subjects while painting them. The room is the brightest lit of both houses.

From memory, the tour cost $15 plus tax and tip (I had a student card). There was no one else there when I went, so I explored the house uninterrupted.

If you’re in New Orleans, Degas House is well worth a visit. It'd make a lovely, romantic stay.