Disabled

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!

Advertisements

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.

She said yes!!!

No, this isn’t an engagement announcement, before you get excited… This is a ‘my doctor said yes to putting me forward for female sterilisation’ announcement.

Let me start by explaining how much I do not want children…

I started life like a normal little girl; I loved playing with dolls and pushchairs, I loved playing family with my collection of Barbie and Ken dolls and I had already named my little girl ‘Pansy’ that I was going to have with my first boyfriend at the age of five –  Ryan Bass – Yes, Pansy Bass, that poor imaginary child, I am so sorry.

It wasn’t until after I hit puberty did I really consider having children. It wasn’t something I thought about at all, in any serious way. This carried on until I was around 23 and in my first sexual relationship. I have always been firmly on the ‘pro-choice’ camp but my boyfriend at the time was ‘pro-life’ which, now I look back, is another reason why I’m so thankful I didn’t have to deal with any pregnancies while with this Manchild.

My situation hasn’t altered much in the last 7 years since that relationship ended, in terms of where I live (still with my parents) and I’m no longer able to work, but I am in a long term relationship with a man; a man who teaches children for a living.

One of the first cards I threw on the table during our first date was that I didn’t want children and that it was non-negotiable. Thankfully for me, he was okay with that and he said he’s not fussed about having children either way.

In the back of my mind, I do worry sometimes that my complete lack of maternal instinct will someday impact on my partner’s ‘not so bothered’ status – I absolutely, utterly, do not want to force this lifestyle upon anyone and my choice not to have children is mine alone. I am unwilling to be responsible for any regret someone may have who ‘wasn’t quite sure’ later down the line if/when they then watch their friends have children and wish they had that too.  You simply cannot read people’s minds, no matter how hard you try, so a huge amount of faith and trust goes into a relationship, which isn’t easy!

You may have read previously that I have an inherited connective tissue disorder – possibly from both sides of my parents. It has impacted my life in a huge way and has changed my entire life’s plan more than once. The only time when me and my illness see eye to eye is when we talk about having children (or not!)

My body does not want to carry children, it has made that clear – it can barely carry itself, let alone an 8lb baby. I do not need to go into detail as to how my condition affects me, but I will say that I wouldn’t want to pass this condition on. It’s a horrible illness and I am not prepared to be responsible for a person with a lifelong illness, as horrible as that sounds.
I may get some responses of protest to that statement, but I honestly do not care what anyone else thinks about my view on disability. As someone who is herself disabled, I believe I am more than entitled to have this view on it.

I’ve written previously about my love of sex, travel and antiques and I stand by it. I am thirty years old. Next year, I plan to buy a house with my partner. We plan on travelling all over the world (if we can afford to save enough, whilst paying a mortgage on one salary!) and we like expensive furnishings. We can afford to be self-indulgent and selfish and I want to keep it that way. I love my life the way it is.

To me, having children is like a ball and chain. I personally don’t see any attraction in becoming a Mum. The lifestyle of parenting looks like hard work, that goes unpaid. I do not have a maternal instinct so the ‘love’ I’d feel wouldn’t outweigh all the negatives; the tiredness, the wailing new-born at 4 in the morning, the toilet training, the babyproofing… the list is endless.

My slightly older sister (by 3 years) has an 18 month old. I love him to bits; he’s hilarious and cute at the same time. I’m very much a proud aunt. But, I see what my sister has to go through every day and I thank my lucky stars I’m as free as a bird and I have no responsibilities other than washing my clothes and paying my £10 a month phone bill.

Earlier this year I spoke to my GP about being sterilised on the NHS and the first thing he said was ‘no chance’ because the CGC or whoever simply wouldn’t consider it; I’m too young blah blah blah. I went home with my tail between my legs and felt rather deflated.

I told myself, I’ll leave it for a few months, then try a different doctor; a lady one, hoping she’d understand more, being a woman herself.

As soon as we sat down, I started explaining about how my coil isn’t working for me and I’d like to explore more permanent options. I mentioned permanent sterilisation and she started talking about how often young women come and say they want to be sterilised and then they come back crying saying they want to be able to have a baby at 35.

I looked her in the eye and said I’m not one of those women. I haven’t wanted children since I was 16 and that hasn’t changed and it won’t ever change. She said to me that she could say yes on the spot… as if trying to call my bluff and I said ‘why don’t you?’, she looked at me blankly, paused, and then said ‘okay then, I will say yes, if that’s what you want’. I replied ‘Oh my God, really? Yes, please, I definitely want that’ and that was that. She briefly mentioned having to get funding for it, which I know will be the next hurdle.

But, in the end… she said yes and I couldn’t be happier.

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! 

Today, I smile.

A wonderful thing happened to me last night.
I received this comment from one of my followers on Instagram…

12592406_443729105826646_2987259939652496416_n….in response to this image I posted to my Instagram account last night. I was feeling bummed about how ugly disability aids are – my wrist splints (worn most nights) are a hideous shade of ‘nude’ and are really really ugly…

splint

I’ve written briefly about my hidden illness before. I don’t often post images of myself when I’m having a flare up, but if on the rare occasions I do, I get this sort of response from just one person, it makes the pain of living with my condition, so much more worth it.

Here is my message to the world:

You may see me on Instagram with a full face of makeup on, my hair clean, nails done… but what you don’t see is how I feel once I’ve done all of that, or on the many days in a week where I physically cannot do any of that – which is why I posted this image above. To remind everyone that we’re all human and sometimes, we just need support – physically and mentally.

I’m sat right now wearing yoga pants, a hoody and a dressing gown with my hair scraped into a bun. I have no makeup on and I’m in a lot of pain all over my body but the comment above has brought a real smile to my face.

So thank you, Shewolfcollective, thank you for recognising my struggle and thank you for your kind words.

 

Beth’s Words of Wisdom

You cannot change someone or will them to grow up. People change with age, they mature at their own rate. You cannot expect to change someone for your own happiness; living on the hope that they will change enough for you to accept them is futile.

Let people grow at their own rate and let them GO if they are not growing at a rate that is compatible to your own life and goals. It hurts, I know. But you have to let people be who they are.

If you can’t accept who they are RIGHT NOW, leave.

Be at peace with yourself.

Dirty Word

Disability.

Now I’ve got that out in the open and no one has died, let me tell you
why I’ve said this dirty word… well, because I am myself, disabled. Now, I know, I don’t look it, do I? Well, that’s your first lesson, I won’t dwell, let’s move on.

Next, I’m going to (brieflyish) explain what this means for me, personally.

I was 19 when I was diagnosed with a genetic, degenerative, multi-systemic, connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. This is also known as ‘Hypermobility syndrome’ or simply ‘EDS’.

A connective tissue disorder is caused when the body doesn’t naturally create enough collagen throughout the body. This means that my muscles, ligaments and other connective tissues are very bendy, stretchy and unable to hold themselves together properly; I’ve sprained pretty much every body part you can sprain and I live on very strong painkillers because of the chronic pain you get all over your body. I’m also on anti-depressants because, well, life isn’t exactly great having to deal with being in pain all the time!

EDS also affects my skin – it’s very stretchy and I bruise like a peach! EDS affects my eyesight – I have to wear glasses because my eyesight really sucks. It affects my central nervous system so I end up with blood pooling in my legs and making me dizzy when I stand up (Postural Orthostatic Tachycardia Syndrome), I wear orthotic insoles in my shoes because I don’t have strong enough arches. EDS affects me in many, many ways and one of the hardest things to deal with is the constant fatigue of having to work so hard to keep your body together. It’s a constant battle.

hypermobility

The crazy thing about all of this, is that apart from my rather gorgeous glasses (will blog about them soon) you cannot see that all this is happening to me. I do not use a wheelchair (yet) and I hide my wrist splints underneath fingerless gloves. I hate wearing my finger splints so only wear them at home. I have a telescopic walking stick that I hide in my handbag and carry enough painkillers on me to kill an elephant!

Now, I’m not looking for a pity party, or praise, or anything really. I just want to share this with you because people don’t like talking about things like this. Well, tough shit, I just did!

So, when you see someone climbing out of their car that’s parked in a disabled bay, think twice before tutting. Think twice before judging – you do not know what is going on underneath the surface.

Unless, of course, they are actually just selfish arseholes parking in a disabled bay without a disabled badge – in that case, feel free to tut away!