Travel

Disability and Travel

Me and travel have a complicated relationship; I’ve even go so far as describing it as a love/hate relationship.

You see, I’ve always loved to travel. When I was a kid, we drove to Cornwall for two weeks every summer. As I got older, we went further afield after my long suffering Mum forced my Dad to go on a ‘proper holiday’ and during my GCSEs we flew to Greece for the first time. I was hooked. My mum and I will often just jump in the car and drive and see where it takes us. We love freedom and finding new, beautiful places.

Like most families, we had our favourite holiday destinations; Portmellon in Cornwall, near Mevagissey – where I spent every year of my childhood from nappies to GCSEs. Once my Dad had gotten over his fear of trying something new (we think he is also on the Autism spectrum, but denies there is anything wrong with him!) he threw himself into every Greek holiday we had after that – he learned basic Greek very quickly and we made friends with the locals in Petra on the island of Lesvos – it became a regular occurrence.

I haven’t been back to Lesvos since I was in my early twenties, but I definitely have the travel bug now. In recent years I’ve been to France, Italy, Germany, Belgium, Switzerland, Iceland, Hungary and the Czech Republic. We came back from Morocco (my first foray into out-of-Europe travel) on Saturday and we are now looking at our next adventure  even further afield – south east Asia.

This all sounds rather wonderful, until you consider that I am unlike most people and travelling is not easy when you have several invisible disabilities. I was diagnosed with Ehlers-Danlos Syndrome Type III (Now called Hypermobile EDS) when I was 19 so for years now I’ve had to make certain concessions as a keen traveller. Now, with my most recent diagnosis of Autism Spectrum Disorder, do I have to consider MANY things before we even book our flights.

How much walking is involved?

This is the question that rules my life. Because of my EDS, I cannot walk very far at all without being in pain. I have painful feet, ankles, legs and back. I also tire very very quickly and if I push myself too far on the first day of my travels, the rest of the holiday can easily be ruined. I wish I could just ‘book it, pack it and fuck off’ as Peter Kay so eloquently put it during one of his stand up routines, but sadly, I cannot – we have to research the fuck out of where we’re going, we have to make sure there are either taxis, horse drawn carriages or tuk-tuks – hell, I’d ride a donkey if I had to, just to see some of the world.

How hot/cold/wet does it get?

Another irritatingly complex issue I have, is with the weather. Again, we have a love hate relationship due to a condition I have called Postural Orthostatic Tachycardia Syndrome – this is basically my body failing to cope with certain movements like going from sitting to standing and my blood pressure drops so much I feel dizzy, faint and I lose my vision for a few seconds. Heat is my biggest enemy.

So, not only do I have to consider how hot it gets, but also how wet – because if you’ve ever had the misfortune to have arthritis or any other type of joint injury or pain, you’ll know that wet, damp weather is torture on the body. I absolutely love travelling around Europe, but the dampness is often a problem, so I have to go armed with heat packs a plenty.

Do I have enough earplugs?

I have struggled to sleep when there is background noise for many years now and it seems to be getting tougher and tougher. I cannot sleep in noisy environments so booking a cheap stay at a hostel and sharing a room with other travellers is a no-go. I can’t even sleep with my Fiance unless I have at least one earplug in – just someone breathing next to me is enough to bring on an autistic meltdown.

Where shall we prioritise?

Ehlers-Danlos Syndrome is degenerative. That means, it’s getting worse as I age. That also means that we have now had to start planning which destinations we want to put on the top of the list and which destinations we can afford to hold off on. We really REALLY want to travel to Peru to see Machu Picchu but the sheer size of it and the fact that it is an incredibly physically demanding place means that we’re going to have to do it sooner rather than later. The older I get, the harder it is going to get to travel around the places like this. I’ve looked into holidays for disabled travellers and there is a company out there that will literally carry you up the mountain to Machu Picchu in your wheelchair. Sadly, we’re a couple on one salary (of a Primary teacher!) so we cannot afford to book a package holiday like that – we have to do it ourselves somehow. And we will, we just have to figure out the logistics.

We spend so much time and energy planning our travels. We have to. I am limited physically and mentally. I find ordinary life incredibly tough, so add the complexity of foreign travel and you can imagine how hard it can be.

Which airport/airline is best for Special Assistance?

We have only recently realised that there is something called Special Assistance. Basically, the airport or the airline have people on hand to help disabled travellers get around the airport and on and off the planes. I booked my first airport assistance when we were flying from Gatwick to Germany and after quite a wait, I was transported via Wheelchair from Departures to the gate. As you probably know, it can be quite some distance to whichever boarding gate your flight is leaving from, so being able to save some energy was a real help.

I have to say,  we flew to Morocco from London Luton and the special assistance service was absolutely fantastic. We somehow managed to arrive rather short on time so the guy rushed us through security via the Priority Boarding lanes and I was also escorted onto the plane via a lift that meant I didn’t have to tackle any stairs at all. I couldn’t fault the service at London Luton aiport. Thank you!

Marrakech Airport also, took me by surprise. As soon as we got off the plane, there was a gentleman and a wheelchair waiting for me. He transported me through the airport, through security (there was apparently a 45 minute wait for able bodied passengers) and he even took us to the Bureau De Change (you can’t take currency into Marrakech, you have to exchange it when you’re there) and then out to the taxi rank. The service when flying back from Marrakech airport was also fantastic – I was transported straight to departures, through security and the only waiting we had to do was for the gate to open! I was so so surprised by the hands on attitude to disabled travellers at Marrakech airport. It is strange to say this, but we had a far far better experience being disabled in Morocco than we have visiting some places in England! Thank you Marrakech ❤

Can we afford it?

I can imagine a lot of our friends/acquaintances wonder how we manage to travel abroad at least once a year and have a mortgage on just one salary – the answer is; living frugally!
Honestly, it’s as simple as that. We don’t smoke, we buy a bottle of wine maybe twice a month and we eat a mainly vegetarian diet (I eat meat when we eat out – usually using Tesco vouchers – thank you Mum!) and we are big savers. We don’t live a hugely expensive life – we don’t have Sky (we’ve only just bought a telly with money given to us for Christmas) and we are lucky enough to be on a friend’s Netflix account (massive massive thank you to Andreas, you beaut!) so we can afford to pay our mortgage, bills AND save for our holidays abroad. We rarely go out socially and we also brew our own beer – or rather, my other half does (I’m wheat intolerant, of course – not to mention lactose intolerant too but that’s another blog!)

So you can see, if you make the necessary sacrifices, you can do more. You can choose to attend the same festival year in year out (not my thing, but if that’s what you like, I couldn’t care less!) or you could travel further and see more of the world.

We have travelled by car, ferry, bus, train, airplane and horse and carriage – we will see the world by any means necessary. That is how important travelling is to us as a couple, and how important it is to me, as someone with disabilities. I will not let my illnesses define me, or stop me from living my life. If I can do it, you can too!

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The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.

Paris, Prague and Budapest

As I’ve posted before, my partner and I are keen travellers. We’re both extremely inquisitive people and we both share a love of seeing what the world has to offer.

In March this year, we went on a 6 day jaunt across Europe. We decided to visit three countries and spend 2 days in each country. 

First, we got the Eurostar from London to Paris. We stayed right by the Gare Du Nord as I needed to walk as little as possible. We visited the Eiffel Tower, Notre Dame cathedral on Easter Sunday and queued for HOURS to see the Paris Catacombs…


Here are the Paris Catacombs


Notre Dame Cathedral


We then flew from Charles de Gaulle airport to Prague airport. We stayed at the 4 star Hotel Yasmin in Prague. It was beautiful and the best breakfast I have ever had! We booked a taxi into the old town and had a mooch around. I found this amazing little bric-a-brac shop and if I had more space in our suitcase I would’ve easily spent a small fortune in there! It absolutely threw it out with rain while we were in the old town so we jumped into a doorway to find it was the entrance to a museum of medieval tortue, so of course we had to go in!


Prague was sensationally beautiful. We most definitely want to go back and stay nearer the old town as there was so much to look at and so little time to do so. I watched a documentary years ago about an ossuary in Prague and ever since then, it has been on my bucket list. Knowing this, my partner took us on the train out of Prague and towards a town called Kostnice to visit Sedlec Ossuary.

After 2 days in Prague we packed up and flew to Budapest. We stayed in a rather grand looking Novotel Centrum. 

We found the most amazingly hipster restaurant in the Jewish quarter in Budapest. It had a library! And served the most beautiful Hungarian wine called Bull’s Blood. Divine. 

I feel I need to describe how difficult it was for me, physically. I’ve written before about having Ehlers-Danlos Syndrome so I hope by now you’re not surprised when I say this holiday really took it out of me! We stayed two days I each country so I could sleep and rest on the second day. The pain rehab would call this ‘boom and bust’ but I call this ‘real life’. 

There is no real way you can pace yourself on holiday like this. We made sure I had a box full of painkillers and heat pads and I travelled with all my splints and walking stick. I sat down on anything and everything I could put my butt on and went to bed early every night. I took a nearly an entire week of rest to recover from the travelling (well, as much as I recover anyway!). 

This is the only way I’ve found works. Others may pace themselves or go on beach holidays but I refuse to. Firstly, I hate the sun (don’t like being tanned) and it makes my POTS worse. European breaks are ideal in terms of short flights and semi-decent weather. 

Our next trip is in December when we fly to Basel in Switzerland then two days later we fly to Freiburg in Germany. It will be snowy, wintry and Christmas markets galore! I cannot wait! 

Back in the saddle

It’s been weeks since my last post and I feel like I’ve been really neglectful of this place recently! It’s time to change that. I WILL start writing regularly again, I promise.

Anyway, a lot has happened since I wrote last – I was accepted onto the residential Pain Management Course at Stanmore for three weeks, starting later this month. I’m hugely relieved to have been accepted but now I’m absolutely bricking it too! I’ll be blogging about my time at Stanmore because I know when I was applying for it, I could’ve done with as many people’s experiences as possible, so hopefully this will shed some light for others yet to attend the course (or who are applying!). Watch this space.

I’ve written before about my love of travel and I’ve just returned from a 6 day European City trip – my partner and I visited Paris, Prague and Budapest and spent 2 days in each city. I’m still feeling shattered since coming home nearly a week ago, so I shan’t be going off on any more jaunts for a while. I’ll write a separate post about our European adventure another day when my hands aren’t seizing up; I got some great photos to show you all.

If you’re into vintage fashion, have a look at Vintage Life Magazine this month – you’ll see a rather large picture of my face!

 

Feeling tired, so I shall bid you adieu for now!

Sex, Travel and Antiques

This has been a topic of conversation among my peers for a while now. I’m hurtling towards the big 3-0 like nobodies business, whereas most of my friends are in their mid twenties but even though we’re not quite the same age, we all have the same decision to make eventually – to have children or to not have children.

For generations, society has dictated that when girls grow up, they become child bearers, mothers and wives. In more recent years, the ‘you can have it all’ movement gave way to women deciding to shun the typical route of getting married and having children instead to focus on being career women first and mothers second.

I am part of a group of women who have not only shunned society’s labels of wife and mother and career woman. I am simply ME.

At 29 years of age, I am at my childbearing peak. In a few years my eggs will start to dwindle and my chances of becoming pregnant get lower. But, for me, this isn’t an issue because I am consciously CHILD FREE. I do not want to have a baby, ever.

My Mother’s Mother wasn’t a maternal lady. She wasn’t a natural mother, but in the 50s, women had babies, that’s just what they did. My own Mother has said that she too didn’t have a maternal instinct (despite having myself and my elder sister) and if she had her time again, she probably wouldn’t have had children. I don’t blame her for saying that, I know how hard she has toiled bringing up my sister and I.

Unfortunately, or fortunately, depending on your stance, mental illness is a family issue for me – it’s in both sides of my family (thanks Mum, thanks Dad!) and I also have a physical (inherited) disability. Knowing that I have inherited these conditions really has made me consider how this may affect my own offspring.

Making the decision to not have children has been an incredibly easy decision for me. Mostly, because like my Mum and Grandma, I seem to have missed the ‘maternal instinct’ gene (if there is one). I see babies and I recoil. The noise they make sounds like nails down a chalk board and I hate bright colours. I hate everything to do with children – the tv shows, the Pixar movies, the nursery rhymes, the toilet training, the school run and most importantly, childbirth.

I have absolutely no interest in carrying a baby in my (poorly designed) body. Having an inheritable connective tissue disorder comes with its own problems so being pregnant whilst having EDS is no mean feat. I can’t run about like I’d need to with a child, I can barely hold my 1 year old Nephew for more than a minute before I’m in excrutiating pain, so physically I know I wouldn’t cope being a mother.

And most importantly for me, I’m too selfish. I love sex, travel and antiques. My partner and I are planning on restoring a Victorian house at some point in our future. You simply can’t do that and afford to pay for a child too. We’re both in our late twenties, I can’t work so we’d be relying on his salary. It’s just too much.

Thankfully, I’m with a man who, like me, has little interest in having his own offspring. He is a Primary School teacher, so loves to come home at the end of the day to peace and quiet. His job as a teacher is extremely fulfilling and he loves imprinting knowledge on the  young. Thankfully for me, we’re both on the same page when it comes to being child-free.

You may notice I use the term childfree rather than childless, because to me, I am free of children. I am not ‘less’ – if anything, I can be more than just a Mum. I’m not saying there is anything at all wrong with women who want to be Mums. I just know in my heart of hearts that I wasn’t born to bring a child into the world. I want to travel the world while I’m able to (my condition is degenerative), I want to buy luxurious sofas and thick carpets that aren’t going to have paint or pen trodden into them. I want bricks and mortar and to sit by the open fire with my (one day) husband and our cats.

To me, that is the best thing about being a twenty-something; I can choose who I want to be and so can you.

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Maybe one day…. but not yet…. 

 

 

Winter Break; Iceland. Part Two

It’s been 4 weeks since we came back to Earth with a bump from our winter break to Iceland and I can say hand on heart, I really do miss being there – so does my partner who said only the other day that we will be going back, for sure.

In part one, I talked about the Blue Lagoon and how to pack for a winter trip if you have a chronic illness. In this part I’m going to be describing Reykjavik, The Golden Circle Tour and the Northern Lights.

Firstly, Reykjavik.

The bus journey from the airport took us around 45 minutes. Our hotel was in the centre of Reykjavik (on Laugavegur which is the main shopping street in the town) so we got to see a lot of the outskirts on the way and it wasn’t too pretty. But once we got into town, we saw how pretty it was! The hotel was placed in the middle of Laugavegur so we were within walking distance of the Harpa (the concert hall) and the world famous Phallological Museum. Of course, we had to go to the Penis museum – it was hilarious.

Our first night’s meal was stunning at Laekjarbrekka – one of the oldest buildings in downtown Reykjavik. I had a traditional Icelandic lamb meal and my partner had a vegetarian Barley based meal. We both loved this little romantic restaurant.

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Image borrowed from whereintheworldisceleste.blogspot.co.uk

Before we went to Iceland, people warned us that it was expensive and yes, it is! We didn’t buy anything other than food and excursions and I came home with £20 worth of Krona left. My partner had a little bit more because all his meals were vegetarian and therefore slightly cheaper than my meaty meals! We both took around £300 worth of Krona with us for the 5 days we were there and it was enough. If you wanted to buy a (very itchy) wooly Icelandic jumper, you’d need around another £100 worth of Krona.

Here’s Hallgrimskirkja – the Church we went to for New Year’s Eve fireworks.

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Another thing we decided before we went to Iceland was that we wanted to TRY and see the Northern Lights. My partner was adamant that we’d see them, but I tried to keep an open mind so I didn’t get too disappointed if luck wasn’t on our side.

We booked our Northern Lights tour with Grayline (we did all our excursions through them) and I have to say a huge thank you to the guys running this excursion. Normally, the tour runs for around 3-5 hours depending on the weather and how far they take us to find the lights but for us, they went above and beyond because they realised that this was the only night during this week anyone was likely to see the Northern Lights and I am so thankful they did, because WOW. You cannot describe the feeling you get when you see the cloud suddenly part, and the light show dances before you like you were the only people worthy of seeing this natural phenomenon.

Sadly, my blasted iphone wasn’t good enough to take any images (and we both decided beforehand that we wanted to experience the phenomenon of the Northern Lights without seeing it through a camera) so you have to take my word for it, but holy murphy, it was sensational. It felt spiritual. It felt mystical. Other worldly.

If there’s one thing you should do in your life, it is see the Northern Lights in person.

Because the weather didn’t look great for the rest of the week, the guys running the tour decided to take us further north than they normally do on the Northern Lights mystery tour. We didn’t get back to our hotel until 3am, but it was so worth the tiredness!

As we were only in Iceland for 5 days we booked as many excursions as possible so the next day (after 5 hours sleep) we were up and out for the Golden Circle tour.

On the Golden Circle Classic Tour we first visited Þingvellir National Park. Breathtaking.

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Gullfoss Waterfall: The first waterfall I’ve ever seen and wow, it was stupendous!

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Then onto an erupting hot spring at Geysir geothermal area

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Thank you Iceland. We will be back ❤

Winter Break; Iceland. Part One

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Since my diagnosis of Ehlers-Danlos syndrome at the age of 19 (shortly after returning from a birthday trip to Paris with a severely sprained ankle!) I’ve made the decision to see as much of the world as I can before I’m in a wheelchair. The likelihood of needing a wheelchair is increasing, as I get older, more things seem to be going wrong with my body.

BUT, for now, I’m not letting it stop me and I have vowed to travel as much as I can, within my limitations. Thankfully I have an incredibly supportive partner who is as passionate about travel as I am but he also forces me to be realistic and look after my health. He really is better at it than I am!

We’ve talked a lot about where we’ve always wanted to go as individuals and Iceland was on both our bucket lists, so we thought ‘fuck it, let’s do it’ and the next day we were sat in front of a travel agent booking a winter break to Iceland.

I did a lot of research into the weather, as other EDSers may know, cold, wet, damp weather plays havoc with our condition, so I was nervous about spending time in a snowy country. But, I also researched the appropriate clothing and as Billy Connolly rightfully said…

“There’s no such thing as bad weather, only bad clothing”

So I stocked up on base layers, mid layers, salopettes, snow boots and a ski jacket. I went straight to my GP and asked for a strong painkiller to take with me and stocked up on heat pads.

As soon as I knew we were going to Iceland I knew we had to visit the Blue Lagoon geothermal spa I’ve heard so much about. Hydrotherapy is a wonderful tool for EDSers so I knew it would be stupid for me not to do something holistic on our winter break. It was a nightmare trying to book in as you HAVE to buy your ticket before you get there because it sells out so quickly – our travel agent Thomas Cook failed to tell us this so we had a mini crisis that Gray Line Iceland managed to sort for us, thankfully.

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Unfortunately the pictures came out pretty terrible as I was trialling a really cheap underwater camera, but you get the gist!

It was around 1 degree outside, throwing down sleet like nobodies business, dark until 11:30am and we booked a 9am slot… Hilarious wasn’t the word!

We booked ourselves Premium tickets which included the use of a robe, towel, flip flops (which were ours to keep), a complimentary drink at the lagoon bar, a lunch reservation at the restaurant and a complimentary drink with our meal.

My partner is a vegetarian (bless him!) and didn’t really fare too well when it came to eating in Iceland, especially at the Blue Lagoon, whose idea of a main meal was carrots on a bed of salad – shame on you Blue Lagoon. My meal however, was beautiful – I had the fish of the day and it was stunning. I went for a dessert rather than a starter and it was an orange Crème brûlée nearly as big as my head! It was sensational.

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Before our trip I did a lot of reading about the Blue Lagoon and how the silica can make your hair really dry and frizzy, so I decided to be sneaky and shower before entering the Blue Lagoon without getting my hair wet. I piled all my hair up and hoped it didn’t get wet. They recommend putting conditioner on your hair, but I went without. Luckily, my hair stayed pretty dry throughout the day and blow dried normally afterwards.

Here’s a selfie I took whilst swimming. Notice how I managed to keep my eyeliner on for the whole thing – I saw LOTS of panda eyes that day! Ladies take note; don’t go to the Blue Lagoon in a full face of makeup… it will succumb to the hot, salty, silica infused geothermal water and you will look silly!

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My partner being the wonderful man he is! 😉

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Stay tuned for Part Two where I’ll be describing the Northern Lights, Reykjavik and the Golden Circle Tour.