Travelling light (HA!)

So I love holidays, always have.  And I love the travelling bit too, but it’s so much more complicated now than it used to be.  Travelling with small children is hard, any parent will tell you that while you are in that car/plane/train etc, no amount of gin will make you think that it was a good idea and I would happily sell my soul for a tardis to be able to transport myself instantly.  They get bored after about 3 seconds, they need feeding every hour, they need the loo 5 minutes after you leave the house. And the stuff….sooooo much stuff!! 

We went on a trip to Cornwall with my parents when Alfie was only a few months old.  We had a family sized car but the stuff we crammed into it, bloody hell.  By the time we had got there and unpacked it was time to come back!  But aside from the amount of stuff we needed to take, being on holiday in the UK is fairly easy, if you really needed to come back you could and if you needed an emergency prescription for something, it wouldn’t be impossible to get it. 

Going abroad is a little more interesting/stressful!  I spoke briefly about us flying out to Lee in the USA when Alfie was 13 months old; oh the paraphernalia!!  So flying is harder now anyway than it was when I was a kid, You can’t take any liquids, creams, sharp implements on planes with you…..erm but what if you need to?! 

Obviously, Alfie needs regular access to creams, many of them paraffin based, as well as needles to burst blisters and scissors to cut dressings.  At the time of us flying to Boston, we also needed bottles of ready mixed high calorie prescription formula.  We contacted the airline and they gave us an extra baggage allowance to accommodate all of the creams, dressings, milk etc and they told us that we could check that bag in with the rest of our luggage.  We got a letter from our dermatology team explaining Alfies condition and that we needed to take more than the permitted 100ml of creams and milk as well as needles and scissors into the cabin.  We also had a printout of Alfies prescription just in case questions were asked. 

And then we got to Heathrow and it all went Pete-Tong!! The day we were due to fly was the day that the luggage system at heathrow had died, there were mountains of luggage everywhere and when we checked in we were told to leave our bags in a random pile next to the check in desk and that the cases would be loaded manually.  I refused to let the case with Alfie’s cream out of my sight because I suspected that our luggage wasn’t going to make it with us to Boston.  We had to be escorted through the security checks and every single bottle of cream and milk (and we had around 4 a day for 2 weeks!) had to be scanned which took age, the guy on the scanner wanted to kill me, could see it in his face!  We nearly missed our flight and didn’t have time to get Alfie creamed up and into his pjs like we had planned (so we had to do that on the plane in the toilet, so far from ideal, especially as it taxis down the runway!)  And as we thought, our luggage didn’t arrive with us and took 3 days to get it back so I’m so glad I refused to let go of that suitcase of supplies!  On the upside, we got new clothes courtesy of BA!

After that experience I always make sure that we check the bag of creams but that we are permitted to take it through security and hand it over to be put in the hold when we get to the plane.  The thought of being overseas without our regular supplies terrifies me.

And then there was the time that Lee and his friend James decided to cycle London to Paris to raise money for the ISG.  Sophie (James’ wife) and I thought that it was a good idea to meet them in Paris and take Alfie and their two boys Seth and Dylan to Disneyland.  We thought the train would be fun...!  The boys went off with their bikes and 3 days later we set off, 2 mums (I was also 6 weeks pregnant), 3 small boys under 5, 2 pushchairs, 2 huge suitcases and a bag full of child snacks and games to play.  For some reason I thought taking the train would be easier than flying but it was just as stressful!  

We got to London without any problem, we even got from Kings Cross to St Pancras without losing any kids, and then Alfies suncream decided to spray its entire contents in my suitcase.  All of Lee’s stuff was covered in factor 50. And then we had no suncream and there was nowhere to buy any.  Anyone with ichthyosis knows that finding the right suncream is a bit of a nightmare, especially the high factor kids ones as they tend to stay white on the skin and look awful.  I phoned Lee and sent him on a mission in Paris to locate a suitable replacement!  The rest of the journey went as expected, kids asking if we were nearly there yet 1 million times over, no one napped and Sophie and I were in need of alcohol (oh yeah I was pregnant, no booze for me!)  After about 10 hours on trains, we were in Disneyland and very tired.  Poor Alfie had blisters on his legs and bottom from all the sitting down and from the heat on the train.  But we all went on to have a lovely few days and the boys all really enjoyed it (even though Lee smelt very strongly of banana boat kids spray for the whole weekend!)

So my top tips for travelling with ichthyosis:

•        .Get  doctors letter explaining the need for creams etc
•           - Get a printout of your prescriptions
•          -  Ask for extra baggage allowance for medical supplies from the airline
•           - Take extra supplies in your hand luggage
•           Check your medical bag but ask to take it through security to the gate to ensure it is on the flight
•           Pack your medical bag well and ensure all bottles of cream are in the locked position
•          Leave lots of time to get through security as all of your stuff will have to go through a special scanner one by one
•          If the airport has a disability service then use it.  We did in Lanzarote and it saved us having to queue in the heat for check in and saved us queuing at the gate. You can also get assistance to the gate if you struggle with mobility.
•          Wear comfortable clothes (preferably in layers)
•          If going somewhere hot, remember to take your cooling vest/spray/fan etc

And top tips for travelling for parents of small children (regardless of ichthyosis):

•  Take gin, lots of gin.
•  If you think you have enough gin, buy a little bit more just to be on the safe side.