Julie Dennison - Living with Epilepsy

Fit to Travel?

Can someone with uncontrolled epilepsy go on an exotic holiday?

Travelling can be a problem if you are disabled. If, like me, you have epilepsy that is not properly controlled by medication, it can be very difficult to travel abroad. However, with a little care and preparation, most problems can be overcome.

Since I was five years old, I have wanted to go to Egypt to see the Pyramids. I am now forty-eight and have recently achieved this lifelong ambition. [Other ambitions have been going up in a helicopter and travelling in a hot air balloon. How I achieved these is explained in my book.]

I suffer with little 'absence' ('petit mal') seizures as well as 'complex partial' and the 'tonic clonic' (falling down or 'grand mal') seizures. Every day I have many such attacks, or fits, and almost daily I need to be supported to prevent me crashing to the ground.

Recently, I had a 'vagal nerve stimulator' (VNS) fitted. This uses a pacemaker-like device in my chest to stimulate a nerve that goes into my brain, with the aim of reducing the number and severity of my fits. The VNS is active all the time, but if I feel a seizure coming on, the stimulation can be boosted by using a powerful magnet that I wear on my wrist.

Because my attacks are so frequent, I was concerned at what might happen if I collapsed in the street, or on public transport. Even in the UK, this can create all sort of problems. Imagine how much worse this might be when the language and culture are foreign.

Precautions

I would be accompanied by someone who knew me very well - my husband. The holiday was in celebration of our silver wedding anniversary, so I couldn't very well leave him behind! He knows me better than anyone and regularly deals with my seizures, when we are out shopping for instance.

We decided to go with an organised tour, so there would always be other people around. It was essential to have an English-speaking rep. Eventually we picked Saga as they were reputable, and had much experience in dealing with people with disabilities and infirmities. In order to go on a Saga holiday, one of your party must be over 50 years old. Fortunately, my husband qualified.

Saga were extremely helpful when I rang them. I was concerned about their included health insurance but was assured that provided I declared my epilepsy in advance there would be no extra charge. One of the major advantages of this holiday was that the Saga tour manager would always be on hand if I needed help.

As I take regular medication, I got a note from my consultant at the National Hospital for Neurology explaining why I needed to carry large number of pills with me. I also was advised to get a note from the doctor who fitted the VNS, and this was readily supplied. In the event, I did not need to use these letters whilst on holiday, but they acted as 'safety nets', just in case. I didn't take the magnet that can control the VNS. I considered the pros and cons, and decided it would be for the best if I left it at home. In the event, there were many security gates to get through and I think I might have had to have produce my documents each time, holding up the tour.

Egypt at last

The flight from London to Cairo lasted four and a half hours, but I have no problem with flying and in fact it was my husband who was taking pills to avoid being sick! We chose not to tell the stewardess about my epilepsy, prefering to wait until a problem occurred. This is obviously a matter of personal choice and others may wish to say something at the start of the flight. Altogether there were four flights during the holiday, and the worst that happened was a two-minute complex partial seizure on the way home. This attack of the shakes was dealt with by my husband, helped by a member of our tour who happened to be a care assistant and was sitting next to me.

There were 39 of us on the holiday, which was was not too many nor too few either - just right. The tour started in Cairo where we stayed for three nights. Whilst there, we visited the Pyramids, which was my main reason for going as I had wanted to see them since I was a child. Then we flew to Aswan and spent three wonderful nights there before taking a Nile cruise ship to Luxor. We spent three nights on board the ship which was big and even had a swimming pool on it. Whilst at Luxor, we went to visit the Valley of the Kings. Even in winter, the temperatures got up to 35 degrees C, so it was definitely hot!

Every museum, temple, mosque and even the Valley of the Kings has a security gate which you must walk through, but there were no problems at all with my vagal nerve stimulator.

We planned to be in Egypt at the coolest time of the year - February. Cairo wasn't a lot warmer than back home. As we moved further south to Aswan, the temperatures rose to the low twenties Celcius. Finally we reached Luxor, and visited the Valley of the Kings where the temperature was unbearable - about 35 degrees C, in winter! High temperatures, can increase seizures - or at least they do for me - so I had to be extra careful. In the event, I was fine.

I had only one tonic clonic seizure whilst away on holiday, which was fewer than I expected. However, ten minutes earlier I was dancing alongside the belly dancer. The point of this sentence is to explain 'moderation'. My husband said to me he thought we ought to return to our cabin which proved to be the right decision as I had a big seizure. I fell head first onto the bed and I only damaged my toes which were still on the ground. It was well timed: we were safe in our cabin and I wasn't a party killjoy. After years of uncontrolled epilepsy you get to know when your body has had enough.

My husband said when were flying to Egypt: "Do as much as you can, but don't overdo it." So we did not go on every optional excursion. We had quiet days, just sitting on the balcony of our hotel, or strolling around. These were the days when we would relax trying to get our bodies ready for the next big outing. The tour was busy with sometimes several outings a day, and then a social life in the evening.

With a little help . . .

Because of all the seizures I have daily, it would have been possible for me to travel unaided.The people who helped me most were my husband, Saga's tour manager and the people who did the tour with us. My husband is usually with me 24 hours a day and is well used to dealing with samll and large seizures, and explaining any problems to passers by and officials. With his help I was able to take a couple of trips without the rest of the party. We went for a walk around Cairo and, later, visited a museum on Aswan.

Whenever we were with the rest of the group, Saga's tour manager was on hand. We felt reassured that he could talk to officials and even get medical help for us (though in the event I was healthier than those who went down with 'mummy tummy'). We made a point of explaining my epilepsy to him when we first met at Heathrow airport, and he was careful to watch out for any problems during the trip, but without fussing. For instance, he was very helpful when I had a seizure ouside the Papyrus Institute. Although I missed the paper making demonstration, the man from Saga made sure I had a seat and a cup of coffee instead.

As for our fellow travellers, we didn't know whether we should explain to them at the beginning of our trip. In fact, a few had already seen me have a seizure at Cairo airport, but for the rest we waited until one day I had a long absence at the dining room table. We then explained the situation, and they became very helpful and caring, even protective.

The staff in all the hotels we stayed at, and on the cruise ship, were first class. Although only young, they were very patient with me. Sometimes a long absence would take place at dinner and the waiters would just go to another table and serve them instead. They would keep an eye on me and when I 'returned', they would come and serve, asking me if there was anything they could do for me. As my husband commented, I wasn't the first person to have a seizure in a restaurant. The staff are used to people being ill and can deal with it accordingly.

A dream fulfilled

I remember being awe-struck when we reached the Pyramids. After waiting all my life, there they were. I felt a lump in my throat and the tears slowly started to fall. At this point I realised that all things are possible, and I had achieve this lifelong ambition. It wasn't just a dream - I had wanted it to do it and had made it come true.

What made the whole trip rather special was the fact I was mentioned in the speeches after the 'farewell dinner'. The Saga manager said I was very brave to take on the trip. I was toasted by the spokesman for our fellow passengers, and given a round of applause. I felt very emotional.

The tour was certainly worth it; the trips to museums, a mosque, the Pyramids, the Valley of the Kings, even a ride in a horse-drawn taxi. I think one of the funniest moments was when I did my belly dancing - everyone said I was better than the professional. I still count my blessings that I got back to the cabin before my 'grand mal' seizure occurred.

Anyone could do this tour, provided they have a positive state of mind. I think that anyone in similar circumstances to me will find that going with a group is really is a much better way of doing things. It certainly made me feel a lot safer and it takes some of the pressure off my husband. The whole tour was breathtaking. I would recommend it to anyone.

I did it! I am at the Pyramids at last.

Saga Holidays have destinations all over the world.

More on holidaying in Egypt