Everyone loves a holiday now and then, and I love travelling and learning about different cultures. You may think that as hydrocephalus is a hidden disability, there is nothing to worry about when travelling. If you think this, sadly you'll be wrong, and more care has to be taken when travelling with hydrocephalus than meets the eye. Luckily, I was born in a country where hydrocephalus is understood and treatment can be got hold of relatively quickly. As a child, my parents took me and my sister on family holidays mostly within the UK, to areas such as Devon Dorset and Cornwall. We went to Dorset every year.
However, when we lived in West Sussex it was easy to get over to North France as it wasn't that far away. As I grew up we went further afield and when I was 11 we went to the USA to see my family. This was the longest flight that I had ever been on, and I have never been to the States before. It was also important for me as at that time I have just come out of hospital from having my ICP monitor fitted and then taken out so I was exhausted from the surgery but really glad to be going on holiday and really enthusiastic about seeing my aunts uncles and cousins and about us all going away together as a family.
I also felt a bit self-conscious as I had a bandage on my head from my ICP monitor had been put in, and my head had been shaved for the operation, so my hair was still growing back. I was glad to finally be out of hospital though ! When I was 12 I went to Spain for the first time with my school as I was learning Spanish there. As the school already knew about my disabilities I didn't have to explain too much to them about my hydrocephalus again, just to explain to them that if I needed to go to hospital I had to be there within four hours of my symptoms starting. As it turned out, I didn't have to go to hospital but I was relieved about, .but even then, my Spanish was good enough to have been able to communicate with the doctors and nurses if it were necessary, (and also if I were concious and alert at the time).
One setback I can remember having on holiday was when I went to the States and I was at my auntie Jane's house. We'd gone out for the day , and I started feeling really ill . I had a headache and was vomiting and my family got really worried because I didn't have health-insurance (due to being unable to easily access it as the insurance companies didn't want to give it to me as I have complex, long-term disabilities and needs) but it turned out to be sunstroke, and after a few days rest I was fine.
There have also been times in my life when my parents and I and my sister were planning to go away together on holiday and I started having a same symptoms of coughing headaches and vomiting. I was at school for quite a while and my parents cancelled the holiday. My sister went on holiday with my auntie, uncle and cousins , and I went on holiday to Menorca with my parents when I felt better. I was disappointed that we couldn't go on holiday as a family, but pleased I still got a holiday. Another time, we were on holiday in the UK and just about to check into where we were staying when I felt shaky and dizzy and started vomiting. We cancelled the reservation and came home. I felt guilty , but also knew it wasn't my fault. Back then , ASBAH didn't have the Shunt Passports Shine introduced a few years back. They could have been useful to me as a shunt passport contains the personal details of the person with a shunt as well as all their most recent shunt scans. It explains what hydrocephalus is in the most common European languages and if a specialist at a hospital sees that they'll know the person has hydrocephalus and be able to treat them more quickly and effectively.
Despite not having this (although I'm really considering getting one) , in really glad and grateful I've not yet ended up in hospital due to shunt problems abroad . I've written this blog post to show anyone who thinks flying with hydrocephalus could be a problem that in fact it's not if you take the right precautions. Many times when I was younger,my parents got my then-GP to write a letter saying I was OK to travel, as people with hydrocephalus are more sensitive to changes in air pressure , and this makes flying unpleasant sometimes. It still makes me uncomfy but I guess I've just learnt to deal with it as I know it'll make me feel uncomfy but I know the feeling doesn't last forever . For example, my ears pop and I get headaches when flying but luckily I don't get altitude sickness so am able to read and listen to music. When the plane landed , it takes awhile for my ears and head to clear , but everyone has that problem, it just takes longer in my case due to my shunt. I also get neck pain and an uncomfortable cramping feeling in my neck when flying. I just suckedd a hard sweet (candy) , and waited to feel better.
All this has never stopped me flying and never will , It'll only stop me if I'm too ill through shunt symptoms to fly.
Today's Thursday and I've covered lot of my personal experiences living with hydrocephalus so far . There are only 2 days left of Spina Bifida and Hydrocephalus Awareness Week 2013 , and I'm still undecided what to write about next. It'll be a surprise I think.
Bye til next time!
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