Summer holidays have started and most people are going away, looking forward to travelling and seeing new places and either relaxing or having new adventures. For people with ME/CFS (and other conditions I am sure), it’s a difficult and for many impossible.
I like going to places and seeing something different. Choosing a holiday for us has to take into account my condition, Rob’s medical needs and the needs of an 11 year old, none of which are very compatible!!
A few weeks ago I went to Scarborough for a respite break, but ended up quite badly scalding my leg! Travelling on my own is very difficult even though Rob drops me at the train ( I can’t walk to platform) in Leeds and then in Scarborough I don’t have far to walk for a taxi, it was exhausting. I didn’t get to see the sea as it’s a 10 min walk from hotel and when I looked at getting taxi there weren’t any available. it does seem a bit of a waste of a trip away, but there are no chores and I get all my meals. Helen who owns the hotel had broken her wrist a couple of weeks before, and was still able to do more than me, including sorting me out after scalding my leg. I did begin to wonder if I was meant to be able to have a break without something going wrong.
Last year was the first year we went abroad since having Emily. After so much agonising over whether we could manage it with my health, Rob’s and and Emily we bit the bullet and booked to go to Euro Disney. My Dad died in the early hours before we left so it was a very difficult holiday, but not for the reasons we expected. It wasn’t a good start to holidaying abroad and added to our feeling that holidays are fated. We did manage a break in Cyprus staying with family, Emily’s first time on a plane! Having managed this we decided that we would try again to do something this year. We spent weeks trying to decide where to go as we wanted local flights, short transfers, reasonable flight times and somewhere not too hot and not too busy. We wanted to do Lakes and Mountains, but nothing met our criteria. We looked at Switzerland, Austria and Italy. It was very disheartening. We were thinking of giving up, but then did a random search and found a compromise, just hope we have got it right.
Once booked of course there is then finding travel insurance. ME doesn’t seem to be an issue, but someone who has had cancer is more difficult even if it is nearly 12 years ago. As we are travelling in the EU medical issues shouldn’t be a problem, but with Brexit looming we don’t know what will happen in the future and we are unsure if we would be able to get cover further afield, but that is currently way out of our comfort zone anyway.
As a child we didn’t have a holiday every year, but when we did, it was an adventure, so I am not used to sitting on a beach or round a pool for a week. I like to see the sights, but with very limited energy and in a wheelchair this is not easy or perhaps the best thing to do, but if I have got there I am going to make the most of it even if I do feel dreadful, but it’s not always possible and there are days when I can’t, which seems such a waste especially when only away for a week.
Eating is very stressful too having several food intolerances that make me very ill and not knowing what is safe or not. I often end up eating salad and fruit, which is fine if it is hot, but not very calorific and energy boosting. Add into the equation Rob has to make sure he doesn’t get a stomach upset or he will be hospitalised and a fussy 11 year old, it’s a nightmare before we even get there.
Last year I managed to forget my essential medication. I spend that much time making sure Rob has his as it is time critical and dangerous if he doesn’t have it that I forget my own stuff. Thankfully we managed to get what I needed as it is available over the counter in Cyprus, it would have been a different story if we had to contact the Drs to arrange it. But it’s not how you want to spend the first day of your holiday. I had also forgotten Emily’s allergy medication so had to get that too, but then couldn’t read the dosage instructions, aggghhhh. Anyway I managed not to overdose her. This year I have my medication packed well in advance! I have to pack in advance so I am not rushing around too close to going away, but it’s still too stressful and I wonder why we are doing it. I need someone to pack for me, but they need to know exactly what I need so it’s easier to do it myself and travelling with a husband and child means I have to make sure they have what they need too. It takes ages to pack even though we don’t need a great deal.
I feel guilty for complaining as I am lucky to be able to go away at all, but it’s not relaxing and fun, but it is good to get a change of scenery and to be away from household chores. Being away for a week is all we can manage, but it’s takes time to recover from travelling there and back, so it’s a permanent struggle and we have often thought that it might be better if we didn’t go anywhere. We have booked a room with a balcony so I hope it has a good view, knowing my luck it will overlook the bins!! There is a pool which should keep Emily happy, but she always wants someone in with her and or want us to watch what she is doing constantly. Before we had Emily, Rob and I were happy to saunter around or read, but there is no chance now.
Now I am wondering if it is fair to send a postcard to someone who is too ill to go away, is it a nice thing to do, or just being cruel? Why is everything a dilemma? And of course sending postcards is another chore!
There are so many places I would love to go and I know everyone has dreams, but I feel that I would be able to do some of them if it weren’t for being ill and having to take everyone’s needs into account. People tell me we should go on a cruise as it is easy, but to me it sounds like a nightmare. I love boats and would love a cruise and these days you can get child friendly ones and wheelchair friendly ones. I’d love to do Norweign Fjords or go to St Petersburg or an Alaskan cruise. The main issue for us apart from price is that we need to be near a hospital as if Rob gets a stomach bug he needs to have his medication IV in hospital. You hear a lot of stories of cruise ships where most of the passengers get stomach bugs, which is miserable, but for us it would mean Rob would have to be taken off the ship and I am sure that no one would insure us for that.
Every time I watch Poldark I want to visit Cornwall, I went several times as a child. Again we can’t do this as we only have Rob to drive and he doesn’t like long distance driving and it’s not fair to him to be the only driver and again if he got ill we would be stranded. We thought about going by train, but to be able to get around when we were there we would need to hire a car which just makes the price ridiculous.
I could ramble on all day, but perhaps I better stop and be grateful for what we are doing and try to enjoy it and not be too stressed before we even go as that is not going to help.