Travel is a huge part of our lives. Super Sarah and I love packing a suitcase, finding a cat sitter for Hugo, and rolling off for a few days. Of course, this has become more challenging since Multiple Sclerosis arrived in our lives but not impossible. There are pros and cons to the different modes of transport available and each will work for different people in different ways. Keep in mind that this is my account, your experience can be entirely different.

Travelling by train

Travelling by train can be super relaxing. I love staring out the window as the world whizzes by whilst listening to music or a really good audiobook. Super Sarah and I are back-and-forth to London quite often, for one of our volunteering roles and for pleasure. We have become accustomed to the routine that goes along with the journey. If you are a wheelchair user and unable to transfer, you need to book your spot on the train in advance as there are only 2 spaces in standard class for wheelchair users. On the day, arrive at least an hour early, this means that you can stock up on snacks, coffee and find the location of assistance services. It’s okay if you don’t know where this is, staff at the train station in my experience are brilliant and will help you find your way. Once you have checked in with the assistance services, you simply need to wait for the member of staff to lead you to your train and assist you getting into position. Staff at the station you are disembarking at will be waiting with the ramp to help you off the train. As we are travelling between Edinburgh and London were usually at the beginning and end of the train journey, so this goes smoothly for us.

There can be complications on the train, for example, luggage racks! Right next to the disabled spots is a luggage rack and it is between you and the accessible toilet. At first it is not so bad, one or two suitcases and when you ask people to move them if they’re in the way they are happy to oblige. Later in the journey however, there is hardly any room for luggage so people pile their suitcases up in front of luggage racks. Super Sarah tries her best to explain but soon eyes do not meet hers and baggage is abandoned. One of my favourite moments on the train happened when Super Sarah mentioned to the guard luggage was blocking access to the toilet, he grabbed armfuls of suitcases and literally move them to another carriage. Not great for those who the luggage belonged to but it certainly solved our problem! One advantage to be a catheter user and having no dignity left is that if the doorway to the accessible toilet is blocked, Super Sarah can simply empty my leg bag into a bottle and take it to the loo with her, but it is preferable that not everyone in the carriage knows every trick that we have up our sleeve.

The destination makes it worthwhile, we have been to London more times than I can remember but we never run out of things to do. Of course, we have a few favourite things, like sit at Southbank and watch the world go by and visit Covent Garden’s, one of my favourite places (though has become a lot trickier as cobbles upset my spasticity). We love seeing a show at Shakespeare’s Globe or having dinner in the shipping containers that have been turned into an excellent Wahaka restaurant.

Travelling by plane

Airline travel has been incredibly difficult as my condition has progressed. When I was able to at least stand, I could transfer from the on-board wheelchair into my seat on the plane and away we went with no difficulties. I could still access the toilet, I could sit comfortably in my chair and fidget until my heart was content. However, the last time I was on a plane was an absolute nightmare. Again, just to highlight that this is my own experience and this won’t necessarily be the same for you. I unable to use my legs at all and I have really bad spasticity for which I take number of tablets to try and relax my muscles. On this occasion I had taken extra baclofen and diazepam.

The first step was to transfer from my wheelchair to one of the really skinny wheelchairs that fits down the aisle of the plane. I had naïvely assumed that the airport staff would know what to do since they did this on a daily basis. My heart sank when one of them then asked “how do you normally do this?”. I explained about spasticity and that my legs would continue to try to straighten so needed to be harnessed to the wheelchair. They agreed and then proceeded to try to move me from my wheelchair by one of them having his arms under my armpits and the other holding my feet. The first thing that happened was that my legs straightened and I slid down my wheelchair causing the staff to panic. Super Sarah was behind us talking the guys through what they needed to do, but they didn’t listen, they proceeded to shuffle me into the unbelievably uncomfortable aisle wheelchair. They then attached two belts, one from my left shoulder to my right hip and one from my right shoulder to my left hip, forming a cross.

They then started to move me onto the plane but of course had not harnessed my feet so my legs straightened and my feet dragged along the floor causing me to slide down the wheelchair. There were two problems here, firstly and most importantly, I was struggling to breathe as I had slipped and the crossed belts were at my windpipe. Secondly, and it’s the sort of thing that means I have no dignity, I was losing clothing the further we got down the plane. Unfortunately, the plane had already started boarding by the time the staff had come to collect me so once the men had deposited me in a seat, I was only wearing half my outfit! Super Sarah and her mum had been following us,  gathering up my shoes and socks was the kind gentleman across the aisle from me on the plane pulled my T-shirt down from my neck so that it covered me again.

Arriving in Barcelona, even though we could not speak the same language, the staff were incredible and somehow managed to explain exactly what they were going to do and when they were going to do it so that I could be prepared. It was later that evening that Super Sarah discovered that I had a handprint shaped bruise on my shoulder. It was painful and took some time to go away.

We spent a week in Barcelona and had a brilliant time. We stayed at an incredibly accessible apartment at MICs Saint Jordi. They really thought of everything from lowered buttons in the lifts and accessible balconies to having hoists and sit-to-stand aids available so that you do not have to hire these. Right outside the apartment block is a lift to take you down to the most accessible subway system that I have ever experienced. Barcelona created this for when they were hosting the Paralympics and out of all the stops there were only two that could not be used by wheelchair users.

Within about five hours in Barcelona Super Sarah and I had already stumbled across a Lego shop, we didn’t even know they had one there! It’s like Lego calls out to us. During a week-long visit we watched sunset from inside La Sagrada Familia which is simply stunning, we completed a cable car ride over the city, saw many sites via tour buses and visited the beach. As we went in August, it was incredibly warm and this had an effect on my MS meaning we had to reduce our activities.

Despite having a wonderful time, there was a cloud over my head as I worried about the journey home. Thankfully the staff in Barcelona were once again absolutely brilliant and after arriving at my destination airport, it was not the same two men who had come to move me to my wheelchair but two very efficient and understanding guys talked me through the entire process, asked me questions and actually listen to the answers. Between the four of us, we managed a smooth and successful transfer into my wheelchair with no problems whatsoever. I did complain to the airport, who assured me that the staff that I had received for the first transfer would be retrained so that no one had to go through the same thing I did. That was the only outcome I wanted, no one should have to go through that to go on holiday.

Campaign for change

The airline industry is the only form of transport that has not had to make adjustments so that wheelchair users can travel safely and in comfort. There’s not even a disabled toilet! Again, another advantage of being a catheter user but not everyone in a wheelchair needs a catheter. I do find it horrendous that whenever a wheelchair user wants to travel by plane, they have to go through a whole process and be separated from the chair that is designed and adjusted exclusively for them and their comfort and safety into a bog-standard plane chair that caused me considerable pain and discomfort. Not to mention the dread of seeing your wheelchair again in a broken state. According to some research that I have done, at least 29 wheelchairs are damaged per day by airlines. This is outrageous!

This has been a serious blog post but I do feel that it’s important to talk about these things so that we can hopefully change. I will leave you with a funny story though, as is my usual style. A travel blogger that we enjoy, Spin The Globe, advised in one of her posts some items to take as an emergency repair kit for your wheelchair in the event that is damaged. These include zip tags and duct tape. Super Sarah diligently packed these items into her hand luggage with excitement. It was only when we got to Barcelona, and I wheelchair was undamaged that we realised whomever scanned that case must have had serious concerns about what we were going to do at our destination as in our hand luggage we had an abduction kit!