Thursday, 6 June 2013

Travelling with M.E

Just updated this post as it had a few brain fog errors. Originally posted at the start of June 2013.

Well I made it to Kos and back but what a journey it was! The night before going I felt tired and thought that  I would sleep but even after my anti inflammatory and some cocodomol my legs were still in agony, so I started to really panic. How was I even going to get out of bed nevermind walk around an airport and onto the plane?  I had a look on the internet firstly about the regulations of taking a walking stick onto the plane. I thought there would be all kinds of security checks and charges, especially as we were flying with Ryanair. Apparently though there are no regulations and passengers that use a stick can take them on board without incurring any charges. However even if I had a stick to help me (not that I generally do but my Mum does have a fold up one from a previous injury) this would still mean being able to walk some distance and at that moment I couldn't even contemplate putting one foot in front of the other. So I looked up the special assistance options. Not that I knew at the time that's what it was called, I thought it would be called disability support or something but of course we live in the land of political  correctness now and I'd like to think I'm special haha. I had hoped to phone up to arrange something but their phoneline wasn't open on the weekends, nevermind at two o'clock on a Sunday morning. Generally special assistance needs to be booked in advance, at least 48 hours before so that it can be put on your boarding pass and arrangements made. However I thought to myself surely they must have some kind of last minute assistance for 'I tripped up and sprained my ankle' type situations. The only thing that I could find was the phoneline and according to that accidents don't happen after 5pm on a Friday. Or in my case a M.E flare up gone wild. My panic levels were getting worse. I just had to hope that when I got to the airport there would be some kind of help available. Fingers crossed arms crossed, everything crossed except my legs as that would be too painful.


At Liverpool airport vehicles can't drop off right outside the terminal building, which I didn't know before as I'd never been, so there is around a 200m walk. Not far I know but a thousand miles in M.E flare up mode. By the time we got inside I was crying with pain and because I'd seen the queue to check in and my heart just sank. As I have said before I am not one to give up easily however I had just had enough and to make things just that little bit worse the special assistance desk was closed.

Firstly my Mum thought that we should sit and wait until the queue had gone down but the longer we were waiting the more people were joining the queue, as there was a few flights booking in. All I was thinking was that this was only the first of the queues, we would still need to queue for security and at the gate and as I'd never used that airport before I had no idea how much walking there would be. Luckily by this time the Ryanair desk was open and my parents went to ask for help. After some tooing and throwing between them and the now open special assistance desk because there was no paperwork and the request needed to be put onto the system I finally got a wheelchair and Oh the relief was tangible. I was nearly crying again. So I was straight into the wheelchair and straight to the front of the queue, well the special assistance queue.


Being in a chair is a strange experience. Firstly because conversations literally go over your head. Usually Mum and Dad rely on me to answer some of the questions but because I was in the chair it was like 'Where's that voice come from?' Also my Mum isn't the best of drivers in the wheelchair sense I think she forgot that I had feet and so kept bumping me into the walls, especially in the lift and of course people are too busy trying to find the toilets or their gates to notice someone in a chair. So it's a pretty scary experience but a relief all the same. Especially as there was a fair bit of walking and stairs considering it's a small airport and there was hardly any seats at the gates.


Whilst waiting at the gate to board I got talking to some other people in wheelchairs. One man, his daughter had M.E and so was very understanding. I think a lot of people were thinking 'Oh what's wrong with her, she's only young and not head to toe in plaster.' It's either that or you get the sympathetic smiles. Anyway this man who's daughter had M.E also had a neighbour with it and she swore by Gold injections. Yes that's right Gold!! Apparently they did her the world of good. I can't imagine you can get them on the NHS though and wouldn't really like to hazard a guess at how much they would cost, but it was definitely worth it for her and excuse the pun but that has to be more than it's weight in Gold. Has anyone had any experience of this?


I was wheeled right up to the steps of the plane, where I got to push in and go straight up the steps very very slowly. If you can't manage the steps then it is possible to use the lift, it's like a van with a scissor lift either end that lifts up to the plane doors. Again this is best booked in advance so that it can be waiting by the plane. Luckily we had reserved seats at the back of the plane, which is one of only a few rows that you can reserve on Ryanair the rest is sit where you like or pay for priority boarding to get on the plane first. We had reserved these seats as last year we had been constantly kicked and shoved in the back and at least on the back row this wouldn't happen. I have since learnt that if you require assistance then you are not supposed to sit on the back row and there is no need to reserve seating as they have to save 2 seats for you over the wings. This is so that in the event of an emergency you can be evacuated easily, but who wants to think about that! It's definitely worth noting for future reference though and can save you money. The back row was handy though as it's close to the toilet, even though I hate using the loo on planes. I'm always convinced that it will be just my luck that we will hit turbulence at that point and there is always puddles on the floor. So no matter how hot the country is that you are travelling too, never wear flip flops on the plane!! You can always put them on when you disembark. After making it onto the plane I arrived at my seat only to find a fully grown woman with a dummy in her mouth in my seat. At least I wasn't the weirdest one on board.


When  we arrived in Kos after a scarily bumpy flight (I'm not ashamed to say I did turn rather dramatic) there was a wheelchair waiting. I think I needed it even more by then after being cramped up for 4 hours and  my legs felt weaker from all the panicing. When I panic really badly my legs shake like mad, so I was even more jelly legged getting off the plane. I was impressed however that there was a chair waiting with not having pre-booked but as Ryanair had put it on their system they were able to communicate this to the staff at Kos airport. Luckily their wheelchairs were ones that you can wheel yourself, so I could get myself to the coach whilst Mum and Dad dealt with the luggage. Although trying to get up the ramps was quite funny. Of course Dad only lit upon the idea of getting a trolley for the bags when we were back in Liverpool but oh well we know for next time. 


For the first few days my legs were quite painful and I could still barely walk. It was funny trying to get down onto the sunbed but I hoped the sun would do some healing and luckily my room was on the ground floor and my favourite restaurant is less than 20 meters away and the owner would always help me walk back. I am good friends with the family that own the restaurant and again they were really understanding and made me feel safe. I think it definitely helps knowing where you're going and being surrounded by people that understand is a bonus because they know why you've had to leave half your dinner before you fall fast asleep in it and won't be offended, which did actually happen. Or you're not being dragged away drunk. I also bought one of those pool noodles to try and exercise my legs a bit to see if that would help. Sitting on the edge of the pool with the noodle under my feet in the water I would slowly straighten my legs and return them back down. The resistance from the water made for a really good stretch even resting my legs on the noodle under the water I could feel the stretch. I'm not sure how much of an affect this had as my legs were still sore but anything's worth a go. Then I couldn't get myself back up again, which probably gave everyone around the pool a good laugh or a perv. 


Anyone anyone that's been to Greece will know that the bathrooms are more of a wet room with a shower head that you have to hold up yourself  (well the basic hotels do as it helps save hot water and means there is enough for everyone.) So in order to have a shower without going splat on the floor I bought in one of the plastic chairs from the balcony to sit on as I showered. Even if I didn't have dodgy legs I think this is something I may bare in mind in future as the bathroom wasn't completely drowned. Soggy toilet paper is not good. Just make sure that your flip flops are handy so you don't slip and break your leg on the way out. Think of the embarrassment. 


During the week I also had a Hamman (Turkish bath) and an aromatherapy massage, which was heaven, for anyone who hasn't had a Hamman they are devine, they cover you in bubbles after exfoliating your skin and it feels like being inside a malteaser. I didn't even have to walk there as we got a transfer, although unfortunately there was quite a few steps in the building itself. Mum and I got taken to the private Hamman where these two male masseurs came in haha. It made me giggle. Unfortunately they weren't that good looking though and mine did smell a bit but him and the girl that did my aromatherapy massage and facial must have had the magic touch because the next day I felt well enough to walk the 100 meters to the supermarket and back. Mind you it could have been the call of a new handbag and Haribo sweets. The next day my legs were aching again although whether this was because of the walk or what sadly seems to be becoming normal I'm not sure. But you have to do things when you can and it had felt good at the time, especially with my gorgeous new bag in tow. 


Whilst away I also rang up Ryanair special assistance helpline to order a wheelchair for the return journey and again found them to be very helpful and polite. All I had to do was reprint my boarding pass, which they had added a note for special assistance on. How can this be? I hear some people cry. Well printers are available all over the world, especially in hotels and asking at reception to borrow theirs or for directions to the nearest internet cafe is far better than incurring a £70 fine (which is clearly stated in their rules Mr Bryan McFadden!)    Plus when you need a chair the less hassle you can avoid the better. When I got to the airport there was a chair by the door  so I hopped in, well fell in. Apparently this wasn't the right type of chair though so I had to wait for another. No I don't understand either! Apparently what you need to do is push in at the front of the queue annoying everyone else and getting lots of dirty looks and then they will send someone to bring the 'proper' chair for you. Don't quote me on that though, but this other woman was waiting forever at the reception desk and not getting very far and this is what one of the security guards had told me to do (another friend from the hotel.) Maybe if you don't want to look rude or face the wrath of people you are going to be couped up with for the next 4 hours it's best to sit down and wait as they were only checking each flight individually. I can't say that this was a fault with Ryanair though, I think it's just the different system for people with disabilities abroad, they don't have as many regulations as we do in the country of political correctness.


So what is in store now, who knows? I'm back to the doctors later this afternoon to see if there's anything more that can be done about my legs. The plane journey probably didn't help but it's always good to get away and as long as you're surrounded by people that understand and can take care of you then there are provisions out there to help you get away and enjoy a somewhat 'normal' time. For more information on travelling with a disability or special assistance take a look at the airlines webpages and search for special assistance.


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