Ehlers-Danlos Syndrome

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.

Student, once again!

I can’t believe I haven’t written a blog post about the fact that I’m now a student (again!)

I am 5 weeks into a BA (Honours) History degree with the Open University and so far, it’s been great! I’m ahead in my studies and handed my first assignment (on Cleopatra and Cézanne!) with 16 days to spare. I figure even if I’m way off the point, the second assignment is a second go at the first assignment so all’s not lost!

This is my desk at the moment (borrowed laptop, antique dining chair!) and it’s not overly comfortable. Having a condition like Ehlers-Danlos Syndrome means sitting is difficult, typing is painful and so is holding a book open! Thankfully the Open University have a great support team for disabled students and they sent me ring bound copies of the course texts so I don’t have to hold them open!

I’m also in the middle of applying for Disabled Student Allowance to hopefully get some dictation software, an ergonomic chair and some other things that will help me study more successfully while being disabled. 

Unfortunately I wasn’t able to attend the Day School as I haven’t been given any funding for travel yet (hoping that DSA will cover this) but I did make it to a local tutorial which was nerve wracking but really interesting. I actually found myself answering all the questions the other students directed at our Tutor so I’m feeling like I’ve absorbed all the necessary information!

I will be writing updates on my studies as this is something that may interest other disabled people who would like to study but don’t know where to start! 

If you have any questions about being a disabled student, please do feel free to get in touch, I’d be happy to answer your questions! 

New Beginnings (the end of Stanmore)

It’s been two weeks (I think!) since I gave my room key back to the Mercure reception and said goodbye to my new friends and goodbye to the room that had been my own little bit of heaven for the last three weeks.

I knew I wouldn’t be able to keep up with writing the blog during the three week programme, so I thought I’d give it some time and come back to the blog with a fresh perspective of the last few weeks…

The Pain Management & Rehabilitation programme run by Stanmore was an experience unlike any other. The first question the Psychologist asked me in my first one to one session was about my expectations. I had absolutely no idea what my expectations were because I knew so little about what the programme actually entailed. I’d had a brief powerpoint presentation at the pre-assessment and it was so vague I really didn’t know what to expect.

One thing in particular I didn’t expect, was to meet such an incredible group of women. There were 7 of us originally, but one lady left after the first night due to her being scheduled for surgery, so we were then down to 6 ladies (or patients, as they call us – which was strange as we were all staying in the hotel, rather than patients on a ward).

I have never met such an interesting, diverse and strong group of women in my life – the most amazing part of the course was spending time with a collective of women who all shared the same ‘secret’ – we’re all in pain.

Pain is such a funny topic. There isn’t a single person in the world who doesn’t know what pain feels like, yet there isn’t a single person in the world who knows what YOUR pain feels like – and that’s rather extraordinary, if you think about it.

Living in constant pain is horrible, it just is. But, when you meet other people who also live in constant pain, something happens. Personally, I found compassion (that I didn’t know I had) and empathy (again, another emotion I struggle to access) in bounds, not only coming from myself, but I also recognised it in them too. One grimace on my face and they knew instantly I was in pain. It’s a wonderfully comforting experience.

The programme ran from Monday morning to Friday afternoon for 3 consecutive weeks and all but one ‘session’ was based at the hotel. We were all given rooms close to the St Andrews and Cambridge suites that were used for the theory based seminars and the Physiotherapy and Occupational Therapy sessions. We were all given timetables at the start of each week with all our sessions mapped out for the week ahead.

The first week started relatively slowly and then the second and third weeks were busier, as we’d become more accustomed to the routine of the programme.

There were a few issues with the programme, mainly to do with the hotel itself – the hotel pool (which we had access to during the whole programme) had heating problems and so we had to miss out on a couple of hydrotherapy sessions – 26 degrees wasn’t pleasant.

The other issue was with the kitchen – the programme is on a full board basis so all food was included, but the kitchen staff weren’t exactly happy (or knowledgeable enough) to deal with two of the ladies’ dietary requirements (gluten free / low FODMAP diet) and it was a traumatic event every night trying to get them fed.
I  wasn’t too happy eating from one restaurant menu for the whole three weeks – there are only so many falafel burgers you can eat before you get sick of them and only so many portions of chips you can eat for lunch before you start to pile on the pounds!

The programme itself has been a huge help to me personally, although I had already set up a lot of my own coping mechanisms in the 10 years since I was diagnosed. For example, relaxation and meditation were already a large part of my life so I felt like a few times it was a bit of a ‘teaching a granny to suck eggs’ situation, especially during the ‘nutrition’ session, but I realise I’m probably in the minority and that a lot of people will really benefit from what the course has to offer.

The occupational therapy sessions were interesting but I wouldn’t say all that helpful for me personally. Firstly, I don’t cook (I hate cooking and I’m lucky that my partner cooks for us!) so there wasn’t much they could teach me in that respect. I can’t hold a pen or pencil so the mindful colouring session was a bit of a miss too, but some of the other ladies found it really helpful.

The first OT I had (we were given a different OT after the first week, which was great!) wanted to change my sleep routine but I was assertive in that I was happy with the routine I currently have and would rather focus on other potentially ‘unhealthier’ parts of my life to change.

I will stress that the buzzword for this programme would be ‘change’. I have no problems with change (I get bored easily) but there are some things I’m not willing to compromise on and sleep is one of them. I’m sitting here writing this blog at 2am and that’s just how I work; my creativity hits a peak at this time and that’s just how it is.
If I was to have a 9-5 job, my routine would change and I’d suck it up, but I cannot work and therefore I have the luxury of living to my own rhythm, not society’s. (End rant!)

Another big aspect of the programme is learning about pacing. You’ll hear the term ‘pacing’ a lot if you join chronic pain groups on social media, but hearing about it and then being taught how to do it, is another thing entirely!

Pacing is where you work out how much of an activity you can do, and then changing your position (or stretching, or changing how you carry out that activity) so that you interrupt the pain before it hits you. I had already started pacing some activities before I started the programme. For example, my partner carries a fold out stool with us when we go on holiday or go to a castle or historical house. I make sure I have something to sit on at regular (or sometimes random) intervals so that I don’t get exhausted too quickly. It means then, that I have more energy to do more/see more.

One thing about the programme I will rave about is the physiotherapy. Before starting the programme I was most excited to get the chance to work with a physiotherapist who knows about Ehlers-Danlos Syndrome as I have had such terrible experiences with physio over the years. I was right to be excited, as the physio I was appointed was fantastic. She was so knowledgeable and personable and I felt really comfortable with her. We discussed my current problem areas (shoulder and lower/mid back) and my love for yoga and pilates (and how I struggle to exercise during a flare-up) and we created a yogalates routine I can do every day as my physio, which incorporates both my shoulder and back problems. I’ve been able to do my physio every day since finishing the programme (thanks to having  an enjoyable physio routine and partner who reminds me to do them every day!)

It’s been two ish weeks since the programme finished and life has gone back to ‘normal’ – I am still struggling to pace some activities that I do most – like using my laptop and watching TV and DVDs on my laptop, but I’m sure in time and with practise, it’ll get easier.

The weirdest thing is not having the other ladies around. I say ladies, I mean friends. I truly feel honored and blessed to have been put on the programme with each and every single one of them.

More than just my illness (Stanmore)

I’m still not 100% sure how comfortable I am blogging about my hidden illness. It’s a difficult thing for me to talk about, as I try not to let my illness define who I am. I started this blog as I’m a huge fan of talking about the things that interest me (like travel, fashion, beauty etc) and I didn’t really want to go down the ‘pity me, I’m ill’ route… but I believe that being a writer is about writing about things that may make the writer or the reader uncomfortable. If I only wrote about the superficial things, I would be doing myself a disservice I think.

So, if you’re not into reading about chronic illness, feel free to skip this blog post and focus on my other topics. If, however, you know someone with a chronic illness, chronic pain or Ehlers-Danlos syndrome, this may interest you!

Last year I paid privately to be seen by an EDS specialist Dr Mittal at St John’s and St Elizabeth’s hospital in London.She suggested I apply to go on the 3 week residential pain management course at Royal National Orthopaedic Hospital at Stanmore.

The three week residential course is designed to help rehabilitate people who live with a chronic illness or chronic pain.

Interestingly, I often hear people use the word ‘chronic’ incorrectly, as if to mean ‘severe’ so let me just say that chronic means long term, not severe. Although, you can have a chronic illness that is severe, the two words aren’t mutually exclusive!

The three week course is run by the NHS and so the waiting list is rather long. It took weeks to apply, to get an appointment and weeks to be assessed.

The assessment took around 2 hours. The first hour or so was a powerpoint presentation by the people who run the course – Psychologists, Physiotherapists, Occupational Therapists etc.

The 2nd hour was spent with the Psychologist and I have to say, it was the most illuminating and entertaining interview/assessment I’ve ever had.

I won’t lie – my personality is something of a headache for most people and I think I left somewhat of an impression on Andy, the senior Psychologist!

I honestly don’t know how the assessment went – we discussed parts of my personality that probably wouldn’t benefit from being in a group of chronically ill people, because I ‘don’t take fools gladly’ and I struggle with social anxiety. I’ve dealt with my EDS on my own (without any real medical input) for over 10 years, so naturally I’ve built up my own coping mechanisms for dealing with chronic pain.

I do struggle with how to pace myself, so I’m hoping I do get the opportunity to be on the residential course and see if the medical professionals can help me with the things I struggle with – pacing, finding the right exercise for me and sleep issues.

I’ve always had an interest in psychology (although I clashed with my psych tutor in school while studying A Level psychology) so talking to a psychologist was a fascinating experience for me. I’ve never spoken to anyone professionally about my personality issues (I would hazard a guess at Covert Narcissistic Personality Disorder myself) and he did one hell of a job on me! He called my bluff quite rightly, when I said I had low self esteem – and on reflection, I would say I have low confidence, rather than low self esteem.

The one thing he did say was that he found me to be an unusual (rare) chronic illness sufferer in that I don’t ‘live my illness’ – and I agree. We talked about whether or not I used the EDS forums and I explained that I have dabbled but didn’t like the competitiveness of it. I found a lot of people on the discussion boards would list their illnesses like trophies and I wasn’t interested in that. He said I was a ‘role model’ which was perhaps one of the nicest things anyone has ever said to me. I will remember that for a long time to come.

My assessment at Stanmore was on 19th February. I’ve not heard anything back, but apparently it can take weeks for them to make the final decision on whether or not they think the course is for me.

Whatever the outcome, I’m excited to see what happens with it. I’ll keep you updated on any results of the assessment!