Wednesday, 1 July 2015

Spoonie in the City: A trip to Brussels

copyright: Sian Wootton

My Mum and I went to Brussels, back in February for 4 nights, which is relatively short for a spoonie to cope with but it was the best we could stretch to. The purpose of the trip was to visit family and to spend as much time with them as I could. Getting to experience the city was always going to be a big if and to be honest the biggest way that I intended to fully experience the city was through my taste buds. Even stuck in a hotel room or at the apartment that's something I could still indulge in. Hello land of chocolate and waffles! Plus just waking up somewhere different; seeing a different view from your window, hearing new voices and different accents, that in itself is an experience. They might be small things but they're things that let you know you're not in Kansas anymore. 

When booking our hotel we chose one that was closest to their apartment for practical reasons. They live in the more business area so that's also a benefit for less noise. The hotel was actually quite a posh one with it being around the European quarter but we managed to get a good deal. I've never stayed in such an upmarket hotel before, so that in itself was also a new and exciting experience. We deserve to spoil ourselves every now and then right? When booking they were even kind enough to give us an upgrade to more of a disabled room. Even though I saw that the showers were walk in ones and therefore quite manageable I only asked if I could have a plastic chair to sit on in there. However they upgraded us to a room with a more accessible bathroom, which was great.

We took an evening flight, so I had a full day to rest as much as possible. Also it meant that Jon could come pick us up from the airport after work and take us to the hotel, which was helpful and meant we didn't have the added stress of getting a transfer. As well as being able to manage with the wheelchair and 1 large case between the 2 of us. We needed the large case for all the chocolate I intended on bringing home. Booking in to the hotel they were great and helped us with our bags. Then it was pretty much 'jump' into bed and recover from the travelling.  I was so excited that there was a plug right by the bed to plug my heat pad into.

Breakfast in the hotel was served until 11am so that was pretty great and luckily I felt well enough to make it down. I could hear the waffles calling! I then had a few more hours of rest before we met up with Ola and the babies at the hotel. We had lunch at a cafe that was part of the hotel complex and after because I felt okay we took a walk/ wheel to their apartment. Once there I made sure I rested in between cuddles and singing nursery rhymes. It's very hard to put those babies down though. Half way through dinner I started to crash and needed to go lie down. I think crashing was quite inevitable, I'd done a lot in those 2 days, especially when you compare it to normal. Plus I hadn't got a lot of sleep the night before. Being in new environments can make it hard to get comfortable. New pillows, the room temperature, different smells, different sounds your Mum snoring ( sorry Mum!) Once I'd recovered enough to move again Jon gave us a lift in the car back to the hotel.

I knew that night that there was no point making plans for the next day and that the only plans that I had was to have a quiet day. This might seem like a waste of a valueable day but remember you still need to take care of yourself. Unfortunately your illness has made the journey with you. I did actually make it down to breakfast but from then on it was back in the pj's and a day of napping and netflix. Netflix in Belgium is way better. I did worry though that my Mum might be bored with doing nothing but she said she was quite happy to have some down time too. In the evening we orderd room service and watched confessions of a shopaholic.

copyright: Sian Wootton

That day of rest really did me good. After breakfast the following day, we met up with Jon, Ola and the twins and as I was feeling good we went on a bit of sightseeing tour. Seeing the city with people that live there gave us a good advantage of them being our tour guides and as they have a double buggy they know about some of the best routes to take that would also be good for wheelchairs. They had also been to tourist information before our arrival and got an accessability map, showing the best ways to go and ones to avoid. There are a fair few cobble stones in Brussels, which was not the best for comfort. Also I had to step out of my chair a few times due to some really rocky cobblestones and if there were no drops on the kerb to cross the road, especially on the bigger kerbs. It also helps when there's not trucks parked across the pavement. Having a big red double buggy in front of you however does help clear the way and make people take notice of you. We rarely had to use the words excuse me. As Brussels is an old city quite a few of the building aren't very accessible, there might be steps into the building (I made an exception for the sweet shop) steps inside the building or the cafes/ restaurants don't have accessible toilets. We went to the Grand Place one of the main squares and to see the mannequin pis, then one of the galleries. Stopping for waffles and going into some chocolatiers. I got so many samples it was amazing.

 It was quite a cold day but of course being in a wheelchair means that you aren't moving about to keep warm and so I felt really cold.  I wanted to get indoors to warm up and luckily we found a restaurant with a big fire to sit by. They had a good deal on a 3 course set menu so we opted for that, only half way through my main meal I could feel myself starting to flag. Being by the fire was actually making me feel worse and I could feel myself getting really warm and starting to sweat. Half from the heat of the fire but also because my body was having a strop. I began to feel really queasy and panicked I was going to throw up. The bathrooms were upstairs and the way my legs were feeling getting up the stairs was not an option. So that caused me to panic all the more. I kind of demanded that we leave as soon as possible. Spoonie Diva. Anyone with children will know that when you have a baby never mind 2 it can take a good while to get ready to leave. Also we had some language barrier problems with the waiters when we asked if they could package up our dessert (another waffle) to go and they thought we meant could we eat it outside. Luckily Ola and Jon speak a little French but I think the waiters still didn't quite understand. During this time I was of course getting worse and getting naggy with it. Having such a lack of control when you really want to feel in control is difficult. All you want is to be able to get yourself into a more comfortable situation but you can't and that is hard to deal with. Luckily once we were outside I did start to feel a little better, I just wanted to get back and put my feet up though. Although it ended roughly I was still absolutely made up that I had got the chance to experience some more of the city. Especially the more touristy parts. So at least if when people ask oh did you go to Grand Place? I can say yes.

copyright: Sian Wootton

The next day was our last day. We had to be out of the hotel by 12pm but our flight wasn't until the evening, so we spent the day at the apartment. I tried to rest as much as possible as I was very tired from the day before and knew the travelling later on would wear me out. And of course I had to get in lots of last minute cuddles.

Unfortunately our time at the airport was not a good experience. It started off well. When we checked in the man noted our special assistance request and rang up to check all was in order and that they would meet us at the gate (and the number of the gate) to take us to the plane. We got to the gate early and waited in the special section reserved for special assistance passengers. Shortly after the gate staff arrived to start boarding passengers. However as the queue was getting shorter the more we started to think something was wrong as no one had come to collect us. But the man at check in had assured us all was in order and I thought. The queue was down to the last few people and still no assistance. I found it really odd too that the gate staff could very clearly see us waiting and that my wheelchair very easily gave it away that we required assistance yet they hadn't thought to question where the assistance was. You need to take a lift down  to the concourse which is only accessible by staff so whether they thought I was going to wheel myself down the stairs I don't know. When the queue was on the last couple of people we went up to the desk, thinking this is just ridiculous. We had to actually tell them that we had booked assistance and so they then tried to call the assistance team about 3 times. Finally someone arrived and took us down in the lift only to make us wait for ages again as she asked whether I needed the ambilift to get on to the plane. Yes, yes I do as stated on my boarding pass and we were assured at check in was arranged. Plus they'd already took the airplane steps away. After more calls the ambilift showed up and the girl that had collected us finally developed a sense of urgency. Unfortunately for me that meant trying to get me onto the lift as it was still lowering. Tipping me right back without warning. I was then rushed out of my own chair and into an aisle sized one as the girl ran off with my chair to get it to the planes hold. Once inside the van they forgot to put on the break of the chair so as it moved off I shot forward. Luckily for them I have the ability to help stop myself from falling. Then once we got to the plane, once more I was tilted right back, so I was virtually lying down, without any security straps placed around me and rushed into my seat on the plane.

I felt so upset and angry. My adrenalin was through the roof, which when you are already scared of flying is not the best way to start a flight. Also adrenalin is of course like poison for us M.E sufferers. The flight itself was awful too. It was incredibley windy from half way across the channel all the way to Manchester. Turbulence is my biggest fear whilst flying, so my panic levels were pushed even further. I felt claustrophobic too because I was in the middle seat between my Mum and a stranger and couldn't see much. I didn't want to be an arm rest hogger next to a stranger but I needed them to grab. Upon leaving the plane one of the air hostesses apologised to me and explained that the assistance crew had blamed the wind. I know this can happen as I have been waiting a while to disembark a plane before as they tried to get the lift to the plane. However if this was the case how come they managed on their first attempt? And I should still have been collected from the gate on time and without her asking if I needed the lift. Also if this was the case then surely their contingency would be to physically lift me onto the plane, which they could have explained to me had there been a genuine problem. So I didn't believe that at all. I did appreciate the air hostess's apology though, even though it was not their fault at all. What a way to end a great trip!

After the eventful journey home I felt very unwell from the adrenalin, upset and nerves, as well as the PEM and tiredness. I felt that I had been treated like a rag doll or a bag, not like a person at all. Let alone a disabled one. I wanted to write a letter of complaint and Ryanair (the airline we flew with) were willing to help me to get my complaint heard by the right people; even though non of it was their fault but the sole fault of the assistance team in Brussels. In the letter I explained what had happened; pointing out the very obvious and basic health and safety rules that were disregarded and how even if they are in a rush that these things should always take priority. Because if they aren't an accident could very easily happen for which they would be liable. I asked that the staff be reminded of the passengers they are dealing with and how they needed extra time and care not rushed and forced,which again could exacerbate a condition or cause injury. Therefore if they did ever encounter problems that it be explained to the passengers and they explain how they were going to get them onto the plane safely and calmly. I explained that with my illness stress and adrenalin need to be avoided as much as possible because it makes me very ill. It makes me wince to think of how a person with an invisable illness could have been treated, especially those with a learning difficulty such as autism, where the extra stress could cause them to have a meltdown. What happened to me really should not happen to anyone, it's simply unacceptable. Especially where very basic health and safety were ignored. That's why I made sure to complain, to ensure that it doesn't happen again to anyone. I have since heard back with an apology and that they have addressed the issue with the staff involved. They also gave me a reassurance that the staff would undergo reviews of their training and of the risk assessments involved.

This hopefully is an isolated incident. I don't wish to put anyone off using special assistance because it really is a service that is very important for the sick and disabled to be able to go away on holidays. My other experiences have all been great, even in foreign countries where of course there is a language barrier. They have observed health and safety and treated me with care and like the Queen that I am. I recommend learning the word for thank you in their language as a nice gesture. And I would also advise to put the airlines/ airports main telephone number and special assistance number in your phone just in case.

I have been asked a few times since this trip whether the experience at the airport put me off and honestly although it was stressful and upsetting I know that incidents like this should simply not happen. Therefore I rest assured that future experiences will be better. Admittedly the flight itself put me off more and I am nervous about future flights. But on the other hand after this trip and breaking through that boundary, as well as watching a few YouTube vlogs, my eargerness to travel more has been reignited. I'd like to think that in some paralell universe that I'd be working hard but also doing lots of exploring too. Some of my friends that I trained with have jobs on cruise ships and so have found a way to do the job they love and travel the world at the same time and I have to say that sounds pretty heavenly. I'm off to Zante soon which again will be a new experience. This trip to Brussels certainly has helped me to be more open to the wider world and that is an exciting prospect. I know it will come with many challenges but I'd like to think all my coping stratergies and mindset will be my saviour.

Sian x


  1. Well done you. I am going to London in a few weeks for 5 days, I am totally dreading it.

    1. Having been to London a few times as a healthy person it does put me off going as a disabled one. I think I would like to try one day though. Just wrote a post on some tips to survive a city you may find helpful.