health

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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I AM Autistic! (duh!)

On 8th December 2017 I sat down in a psychologist’s office and underwent a series of assessments/tests that are used to diagnose Autism Spectrum Disorders in adults. I discussed my childhood, my teen years and my struggles in life both as a young person and as an adult. My Mum also filled out some forms about me and also answered some questions from the Psychologist about me as a toddler – it’s easier to diagnose ASD if they have a decent amount of history from around the age of 4, so it was really important that my Mum attended with me. I left the appointment and Christmas and New Year came and went….

Six agonising weeks passed and finally my result appointment was here.

I sat down in my psychologist’s office once again, and nervously grasping at my coffee, I waited with bated breath. She asked me what I was expecting or hoping for and I answered honestly, while looking at my feet, “I’m hoping for an ASD diagnosis”.

A slow pause and she starts reading out parts of her report (that she had yet to finish) and listed how many points I scored for certain questions and how that measured up to a diagnosis…….

It turns out that on the ADOS 2 assessment, I scored 9. The threshold for an ASD diagnosis is 7, so I can say that I am officially diagnosed as being on the Autism Spectrum and I have Autism Spectrum Disorder. I am not ‘neuro-typical’ – not that that comes as a huge surprise to anyone that knows me, personally!

Part of the report says  “she did not ask for information during the ADOS 2 in a social manner; that is, she did not inquire about nor express interest in the examiner’s thoughts, feelings or experiences, even when presented with a leading statement to investigate further.”  – I feel particularly embarrassed about this part of the report, as it seems so obvious to me looking back. I remember the discussion and kick myself that I didn’t ask her any questions about herself – but then, I also have to remind myself that this isn’t my fault. I am autistic and part of that means that I do not consider other people’s feelings or thoughts instinctively, like neuro-typical people do. It is something I can now understand and accept.

Being diagnosed with Autism wasn’t a surprise to me, but it did take me a week or so to let it sink in – I wasn’t ‘normal’ and after 31 years, it’s a shock. It did though, validate my feelings that I was innately different to the general public – an inkling I’d had since I was a young teen.

However, I now have to navigate the world knowing that my brain isn’t developed in the same way as most people. This means I’m now constantly questioning myself and trying to figure out who I am. Questions like ‘is this my autism, or is this my personal taste?’ and things like that. How much of what I do and say is down to being autistic? You can see where I’m going with this…. it has opened up a can of worms in a sense.

In contrast, it has also given me a sense of relief. Relief that there is now a clinical, medical reason for why I have found life more difficult, more stressful and less enjoyable than most people. I’ve struggled socially since I can remember and now I know why; it wasn’t my fault that I couldn’t keep friendships going through school. It wasn’t my fault that I was in my early 20s before I had a boyfriend and lost my virginity. Social skills don’t come naturally to me and now I understand why. I understand why I’ve struggled with Social Anxiety Syndrome since my teens; it turns out that Ehlers-Danlos Syndrome and ASD are often seen together – anxiety disorders are also co-morbid conditions often found alongside EDS and ASD – and I have all 3!!!

So that explains it. I’m autistic. I am autistic. And that’s okay. I guess that also makes me somewhat of a genius in a way… I’ll get onto that in another blog post!

Ta ta for now xx

 

 

 

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

 

Am I Autistic?

This is the question I have been pondering for quite some time now. I wouldn’t be surprised if I am found to be on the Autistic Spectrum – not surprised one little bit.

You see, I’ve always been ‘different’ – at school, I marched to the beat of my own drum, was known for being an outspoken and opinionated person and my nicknames were ‘Witchcraft’ and ‘greebo’. From around the age of 13 I found my dark side and fell in love of Black Sabbath, Wicca and purple lipstick. I had an altar and I cast spells. All of this, of course, meant that I was constantly bullied.

However, none of that made any difference to who I am inside. I’m me. I’m different and always will be. I’m 31 now, and apart from having grown into my looks (and lost 3 stone in the process) I’m as weird or as ‘eccentric’ as I was when I was a young teenager. I’m normally found wearing black from head to toe, which I gather isn’t exactly ‘normal’.

I’ve dabbled in the vintage world, and for a good few years I was obsessed with the 1940s and 1950s and even started my own business selling vintage clothing and modelled as a pinup. Then, I got bored of everyone looking the same and I put my vintage wardrobe into boxes in the loft, where it’ll stay until I fancy a change again.

My biggest obsession now is my Victorian home that I share with my incredibly patient and laid back partner. I honestly don’t know how he copes with me and my quirks but 3 years on, we’re still deeply in love. Everything in our home is Victorian, because I like integrity.

Apart from my obsessions, I also struggle to empathise with people. I often put my foot in it and offend people – though with age, I’m definitely learning how to soften it a little. Don’t get me wrong, I’m still doing it, just not as often.

I also don’t like people, generally. I don’t know if this is because I’m a natural introvert, or because I’m autistic, but people annoy me. The herd mentality of most people irritates me and I just want to shake people and say ‘wake the fuck up’ or ‘shut the fuck up’ when you hear them talk about inane things like football or X Factor. I don’t want to talk small talk – I absolutely hate it. It makes me uncomfortable, so I tend to avoid people I know if I see them. It’s not personal, it’s just my own issue I’ve always had.

Facebook has been an interesting journey – especially when you look up people from school to find that they’re all still friends with each other, and most of them married each other too. I think to myself how odd that is – that they all left, went to university (I tried that twice, it wasn’t for me!) and then came back ‘home’ and married their school friends. I find that odd, and frightening. I am only friends with 2-3 people from school and they’re all guys. Most of the girls were complete bitches. I don’t like women very much, men are easier.

A few things about me:

I don’t like authority. I don’t like uniforms. I don’t like being stuck in an office from 9-5 every day and living for the weekend. I don’t like loud music playing in shops. I don’t like busy shopping centres. I like being indoors, I like being quiet. I like the company of animals. I like to read. I like routine. I don’t like busy pubs – I won’t walk in first. I don’t like plans to change, unless they’re being cancelled altogether. I don’t like big groups of people. Festivals are full of sheeple. I like the vikings. I like strong, independent women. I like feminism. I’m a conservative because I like money, but a socialist because I don’t have any. I’m a walking contradiction. I’m confident, but shy. I’m egotistical. I’m a grammar nazi. I’m a super-recogniser. I have watched the same movies over and over and know all their scripts. My best friends are Carrie, Samantha, Charlotte and Miranda, Rory and Lorelai Gilmore and Lagartha Lothbrook. Fictional people are more interesting and relatable.

So, I’ve decided that I want to know, for sure, if all this (and plenty more besides) makes me autistic. There is ADHD in my family and my Dad is incredibly ‘quirky’ himself. I’ll eat my hat if I don’t end up diagnosed with something unusual.

I’ll be writing about my experience of the Autism Diagnostic Assessment as/when it comes around – it’s booked for 8th December, so it won’t be too long. If you’re interested in following my home renovation journey or my autism journey, please hit the ‘follow’ button and you’ll be emailed whenever I publish a blog post ❤

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.

A Shloermergency! Sponsored Blog Post

So, it’s nearing the end of January at lightening speed and whilst I’ve not personally attempted a Dry January, I do know people who have – How have you done?

If you have been living under a rock, you may not have heard about Dry January, so what’s it all about? Well, it’s exactly as it sounds – you take one month off from drinking any alcohol whatsoever – this can be to improve your health, to save a few pennies or just to see if you can do it. Loads of celebrities have got involved and it’s also a great way to have a healthy start to the year.

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