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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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We’re engaged! (aka Fuck You Disney!)

My partner Carl and I have been together for nearly four years. He is my first long term boyfriend (my last relationship lasted just a year!) and we bought a house together in October last year. I guess it was only natural that being a woman, I’d be the one dropping hints about marriage.

We had discussed marriage quite early on in the relationship and agreed that it was something we’d both like to do at some point in the future, but Carl had said that he believes marriage is a religious institution so wasn’t too fussed about it either way.

Unfortunately for me, and most women my age, I’d grown up watching all the Disney ‘happily ever after’ fairy tales where the Prince rescues the Damsel in Distress and they get married and live happily ever after.

It dawned on me very recently, that I’m in a relationship with a man who wasn’t surrounded by the fairy tale romance ideal that is thrown down the throats of us ladies. He’s a man – he doesn’t watch chick flicks obsessively like I do. He doesn’t live vicariously through the Sex and the City crew or the Gilmore Girls like I do.

The ‘Men are from Mars, Women are from Venus’ idiom is one that is true, at least for me. It was this realisation that made me stop and think ‘no, fuck you Disney, I’m doing this my way’ – So I decided to fuck every fairy tale and chick flick I’d grown up with and decided to move my relationship on myself. I asked Carl to marry me one night as we were sat on the sofa. I instigated ring shopping by saving my favourites to my Etsy account and asking Carl his opinion. When I found the ‘one’ I showed it to him and he gave me his card to buy it.

It wasn’t until we were lying in bed one night and he turns to me and says ‘give me back the ring, I want to do it properly when we’re in Marrakech’ – and he did. He got down on one knee, with the ring, on top of the terrace and asked me to marry him. Of course, I said yes! But, I didn’t NEED him to get down on one knee and propose. I was happy being the instigator in the proposal, but he obviously felt like he wanted to propose to me too and that was lovely.

We’ve had a very egalitarian relationship from the beginning – we both cook, we both clean, we both make financial decisions, we discuss everything together. It seemed that we also managed to have an egalitarian engagement too!

I’m not saying, by any means, that ‘romance is dead’ or that I forced my partner into agreeing to marry me. By telling our story, I’m trying to diffuse the myth that a relationship (or marriage) is all about a man getting down on one knee. It doesn’t have to be that way – FUCK DISNEY, FUCK THE CHICK FLICKS. Also, fuck the ‘leap year’ idea that a woman can only propose to her man during a leap year – how the fuck does that make any difference!? Honestly!

There is no shame in a woman asking a man to marry her. Let’s break down the patriarchal dictatorship that rules our lives and say no to being the damsel in distress. I am not a princess locked in a tower, waiting for a knight in shining armour to save me. I’m a woman, who deeply loves her partner and wants to be legally married to him, to be his wife. Why does the man have to do the asking? In my world, he doesn’t.

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(Photos taken on the roof terrace of Riad Assouel in old town Marrakech, Morocco)

Adult Autism (ASD) Assessment

On 8th December 2017 I attended a private practice in my hometown, for an adult autism assessment and I thought I’d share with you how it went and what happened.

Firstly, I shall briefly explain how to get an NHS assessment if you think you may be on the Autistic Spectrum. The first port of call is your General Practitioner (GP). I spoke to my GP about my concerns and he asked me to go home, write down the things about myself that make me think I may be autistic, give it to him and he will then decide if what I’ve written warrants a referral for a diagnostic assessment.

Unfortunately for me and others in my area, our NHS autism clinic has closed, so referrals are now being sent to a local private clinic instead and they take on NHS patients through a GP referral. I’m not sure if that’s a nationwide issue (I’d guess that it may well be) so always ask your GP first – I had to signpost my GP to a referral service myself and find one that would take NHS referrals.

Obviously, my GP thought I made a good enough case for myself, because the next thing I know, I get a phonecall from a private clinic asking me if I would like to book my ASD assessment. A few days later I get 3 emails containing self-assessment questionnaires to fill in online. I wrote quite a lot of detail in those, as I am much better at writing about myself than talking about myself in person – clearly!

The 8th December came and my anxiety was going nuts. I had terrible stomach symptoms (my tummy tells me I’m anxious before I realise how I’m feeling) and sleeping was difficult the night before. I get to my appointment and the first thing I notice is how horribly bright and colourful the waiting room was. Hideous bright lights and yellow cushions. The sofa was pretty cool in that it was a button back chesterfield with dark coloured patchwork fabric on it. That bit, I did like!

So, we go upstairs with my Psychologist and I take my Mum in with me – after all, she knows me better than I know myself (and can remember what I was like when I was a toddler) which is apparently very helpful during an adult diagnosis, as ASD symptoms are easier to identify in children. I think the first part of the assessment was the Autism Diagnostic Interview (ADIR) and My Mum told some embarrassing stories about me – like sitting in front of the tv as a baby, listening to classical music – crying!

Once we’d talked about my childhood, my Mum was asked to leave and we then started on the ADOS-2 (Autism Diagnostic Observation Schedule) and what I’d call ‘childrens tests’ – things like reading a book out loud, that didn’t have any words in it – so describing the story of pictures (which I found incredibly difficult!) and then I had to make up a story featuring random items from a plastic bag of toys and random things. I passed on that one as I couldn’t find a link to any of the items and couldn’t create a story – I have an absolutely useless imagination!!!

The Psychologist told me that there were two other assessments she could do during my appointment; a personality test and a cognitive test. But, as she’d already learned about me doing a degree, she agreed that I have no cognitive issues and I don’t have a personality disorder, so we skipped both of those tests. We talked a lot about my childhood and my teen years and not much about my life as an adult – although I thought it was pertinent to explain how I have not had a ‘proper job’ since I was made redundant from working part time with my Mum for a charity in 2010 and that I spend most of my time reading, researching and looking for things on ebay (and obsessively buying antiques for our Victorian home!)

The appointment was over before I knew it. The psychologist walked me downstairs and told me I’d get an appointment for the results of the assessment and it should last around an hour.

My results appointment is on 17th January 2018 – so, I have a SIX WEEK WAIT to find out if I’m on the Autistic Spectrum or not. Suffice to say, this will be the most tense 6 weeks. I really wish my appointment was sooner.. I feel like I’m in limbo right now. I’m watching lots of videos on Youtube of people who’ve had adult diagnoses and I just want to know if that may be me.

Of course, I will be writing up the results of my Adult Autism Assessment and am also considering starting a Youtube channel of my own to help raise awareness of ‘being different’ (I hate that term, but I AM different… I just don’t know HOW!)

If you need any information about Autism then have a look at the National Autistic Society website – it’s been a great help to me so far.

xx

 

Fashion – friend or foe?

When I decided to start blogging I thought it would be easy because I was an individual. I was often admired by my peers for being different to the masses and standing out in the crowd, so I thought ‘okay, I should use this’…

It wasn’t until I joined twitter did I realise just how big the blogging pond is. Like anything in life, you have to compete with others if you want to get noticed or get ahead. But, just how different am I really?

During my formative years I was picked on for my eccentric fashion choices. At the age of 14 I was shopping in Camden, wearing platform shoes and purple lipstick. It may not sound so strange now – thanks to the wonderful fashion world bringing 90s nostalgia to the fore – but back then, I was odd, different and strange. Uncool even. Desperately uncool.

But it seems that the fashion choices I made as a teenager are what the cool kids are wearing now (boy do I feel smug that I got to wear it when it was uncool, the very definition of cool!) so I am a little upset and confused as to why I cannot find anything to wear as a twenty something goth who doesn’t want to be cool?

What I’m trying to say is that while I absolutely, 100 percent applaud companies like Killstar, Dolls Kill, Ironfist and Disturbia (to name a few) who have in essence reignited the alternative fashion culture, I have to say that I just don’t like much of it at all. (Please don’t hate me, I’m just being honest!)

 

 

I was definitely interested in the occult when I was younger and pentagrams were my favourite shock tactic. But as I’ve matured, I’ve realised that I’m about as Wiccan as I am Catholic. I’m not a witch, I’m a goth who loves black, so do I really want to wear something with a pentagram on? (Hence why I haven’t bought the Disturbia swimming costume I blogged about the other day!)

So, where do I go from here? Well, I’m redefining goth to suit me – I’m a minimalist goth. I shop in any shop that sells anything black and see what I can find to suit me.

As of this moment, there are no high street shops that cater for the look I create for myself…

  • I love ‘off the shoulder’ because my collarbones are sexy.
  • I wear long sleeves or 3/4 length sleeves because my arms aren’t the best part of me.
  • I never wear skirts or dresses above the knee because I’m pear shaped and wasn’t blessed with good legs (I dress for the size I am, not the size I wish I was!) so this leaves me out of a good 90% of modern alternative brands like the ones I’ve mentioned above.
  • The majority of the dresses are either really really short or really really long with a thigh high split.
  • The tops are usually cropped which for a country where size 16 is the average size, doesn’t bode well at all.

I’m all for other people dressing in whatever the hell they like. I’m not here to tell people to cover it up, I’m simply saying that I like to cover mine up. Elegance is something I have admired since I can remember. Sadly, elegance isn’t trendy right now, so I’m very limited in what choices are out there for someone who wants to be gothy and elegant.

When I say I’m a minimalist goth, I’m saying I like simplicity. I wear plain black tops with very little details on. I like asymmetrical cuts reminiscent of Vivienne Westwood. I like form fitted dresses like the Monica dress from Pinup Girl Clothing. I like black cowboy boots. I like leather jackets. I like plain skinny jeans (without tears in, dear Lord how scruffy) and I like opaque tights. I like to wear one ring on the middle finger of each hand because more than that looks cluttered. If I’m wearing a necklace I won’t wear earrings and visa versa. I like flared trousers whether they’re in fashion or not – they suit my curves. I like the dystopian look if done simply.

It’s all about creating a look that enhances not detracts. That to me, is what being a minimalist goth is about.

In the next few blogs I am going to be writing about a few fashion designers/brands that I do like. Unfortunately, I have champagne tastes and a beer budget so images of me wearing these brands will be few and far between. However, I will always strive to save up and buy a couple of capsule items from these designers so I can show you first hand just how amazing they are. Stay tuned.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A permanent decision…

Love them or loathe them, they are now more popular than ever; I’m talking about tattoos.

Tattoos are an emotive subject and everyone seems to have an opinion about them so I thought I’d share my somewhat surprising views (or so I’ve been told!)

Now, on the surface, I look like an ‘alternative’ lady. I have dyed black hair, wear a lot of black clothing, skulls being a particular theme I go for so people naturally assume I am tattooed. The surprising thing is, I’m not – well, I was but I’m not any more.

As I’ve written previously, I began an apprenticeship in body piercing when I was 24 and absolutely loved it; I had lots of unusual piercings in my ears, had skin divers along my arm, a nipple piercing, tongue piercing, navel piercing to name a few. But, I had one lowly tattoo on the inside of my right wrist and that was it.

Customers were surprised that unlike my fellow body piercers and tattooists, I wasn’t covered in inkings and my piercings weren’t all on my face. I liked being the odd one out (shocker, I know!) and eventually, got sick of seeing people covered in tattoos; it wasn’t shocking or interesting any more – particularly as the tattooist at the place I was piercing at wasn’t actually very good at all. But that’s another story for another day!

When I left the piercing place, I ended up being a full time vintage and pinup model and spent a lot of time with other models. It didn’t take long to notice a fascinating overlap when it comes to pinup and tattoo modelling; I was surrounded by “alternative” models who did both alternative and pinup modelling.

During the two years I spent with one group of models, it seemed to me as though they were getting tattoos simply to get photographed for front covers of magazines. Whilst, I applaud their dedication, it really did put me off being tattooed because to me, they all started to look the same.

A part of who I am is my need to be different. In a world where everyone seems to be tattooed, I decided I wanted to undo my foray into being tattooed myself. So I went about having laser tattoo removal.

Before I show you what my non-tattoo-tattoo looks like, I’ll show you what it looked like when I had first had it done.

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I chose to have my favourite name tattooed on my wrist – my late Grandma’s name and the name of my favourite Monarch, Elizabeth I. Yes, my name is also Elizabeth – cue the jokes about forgetting your own name so having this to remind me… blah blah blah!

My vintage modelling was going really well so I decided I wanted to remove my black tattoo and have my ‘blank canvas’ back. Vintage modelling is as it sounds – I wore all original vintage clothing from the 1940s and 1950s, set my hair in rollers and wore a lot of red lipstick. As you can guess, tattoos weren’t a hugely popular look back in the 40s and 50s so I wanted to look as authentic as possible; this meant removing my tattoo.

When people talk about tattoo removal, the first thing people say is how painful it is. Let me say right now, they are absolutely right – laser tattoo removal hurts. It hurts a lot. Even more than having the tattoo in the first place, so to anyone wanting a tattoo who isn’t quite sure… think hard before you are tattooed because it is absolutely no fun at all, having it lasered.

Luckily my tattoo is black; a colour that is more easily removed than others (red, being one of the hardest colours to remove) and it is quite small. Unfortunately I did have my tattoo on the inside of my wrist which is I’m told, quite a tender place for a tattoo.

I’ve now had around 5 sessions of laser removal leaving a minimum of 6 weeks between each laser session. The longer you leave it, the better, as the tattoo will continue to fade after each session and for weeks after.

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This was after the 4th session so it had already faded quite a lot by then. This was taken around 20 minutes after having laser on it. It was extremely swollen and tender – feeling much like severe sunburn… Immediately after having it lasered, it looks a lot more faded than it will the next day. This is normal, but won’t last.

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This was taken around 6 hours after the session, as you can see it has all blood blistered.

And this…. is how it looks now, after 5 sessions – the last one was  a year ago.

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As you can see, it hasn’t entirely gone. It has scarred. Apparently this is a common issue with laser removal, as the skin doesn’t always react the way we want it to. I may have one more session to see if it does any more lifting. I’m quite happy with it now, as no one seems to notice it any more.

For anyone considering having a tattoo, I cannot stress it enough how important it is to be sure of who you are before you do it – or, be absolutely okay with having a painful removal procedure that isn’t 100% effective. It is extremely unlikely to disappear entirely and sometimes the only way to get rid of a tattoo is to have an expensive, dark, obtrusive cover up tattoo over the top.

So that’s my experience with tattooing and why I’m strictly on the nay camp when it comes to being tattooed. What do you think? Feel free to share your thoughts!

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.

Jack of all trades, master of none.

I don’t have a degree. I have a diploma in Makeup Artistry.
I once did a 6 week Silversmithing course.
I then did a 6 week dressmaking course.
I spent 3 years working in an office for a UK Charity as a Data Administrator.
I became an apprentice body piercer.
I ran my own business for two years selling vintage clothing and accessories from the 1940s and 1950s during which time
I became a vintage and pinup model and was signed to a character agency called Ugly Models (the name is ironic!)

I may not have a long list of qualifications, but what I do have, is a rather interesting, eclectic resume.

If I have any advice for my readers, it’s this – try ANYTHING. Don’t be afraid to fail, because if you don’t try, you’ll never know if you kick ass at something. I may not kick ass at sewing a straight line, but I ran a business for two years and absolutely thrived on it.

Take risks, learn a new skill, say yes to opportunity.