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In a change from my usual posts, this is a deeply honest and personal account of all that this year has thrown at me, from terrifying to wonderful and everything in between.
Trauma
To say my 2018 started with a bang is an understatement. By the evening of January 1st my husband Darren was in an intensive care unit with what had started as a cough only 5 days previously, and had now developed into severe pneumonia. 12 hours later he was sedated an on a ventilator. A week after that we almost lost him, Royal Lancaster Infirmary could do no more and he was transferred 60 miles from home to University Hospital South Manchester’s Critical Care Unit for Extra Corporeal Membrane Oxygenation (ECMO) treatment. This would provide respiratory support to Darren, whose lungs were unable to sustain his life.
At this point I’m in danger of turning into a medical textbook, so if you’d like to find out more about ECMO click here.
The days, weeks and months that followed were quite literally a rollercoaster. I always thought that term was a bit of a cliché, but for me there is no better way to describe the intense highs of anything more positive than ‘stable’, and the crushing lows when things got even worse.
I was an utter wreck. The love of my life, my soulmate, my partner in all things was suddenly unreachable. Friends, family, colleagues and even strangers provided unwavering support for which I will be eternally grateful, but there is nothing that can replace you team-mate, the one who knows what you need before even you do.
People would tell me that they were amazed by my strength, they didn’t know how I coped; the truth is you never know until you have no choice. Shock, trauma and survival instinct do amazing things to the brain, and show you that you are capable of things you could never have imagined even in your worst nightmares.
I do believe that my disability actually helped in this situation. It wasn’t ideal suddenly needing a lot more help to cover all of the things that Darren usually did to support me, but as most people who have had a disability for a long time will tell you; we’re used to having to adapt to the world around us.
Turning Tides
The end of March rolled around, I somehow got through a birthday in the ICU listening to the beep, beep, beep of Darren’s monitors. Three days later we nearly lost him again, and then suddenly, as if he knew, the tides turned. Another few days and Darren was awake; confused, scared and unable to move but here! I’ll never forget hearing his first words after three months, or the first time he stood up, or the first time he kissed me from his hospital chair. And I’ll always, always remember 24th April 2018, the day my love came home.
I’d be lying if I said it was all plain sailing from there; we weathered some very difficult times getting used to our new lifestyle but, once you’ve faced highly-qualified consultants telling you that your husband is probably going to die, life’s challenges seem very different.
So, it was time for real life to resume and the first order of business
was going back to work. I was incredibly fortunate to have such supportive employers, Tourism for All, who had allowed me to have four months off on full pay. I eased back in part-time whilst caring for Darren, but I knew deep down that I needed major change. I’d done this job, which I adored, for 13 years. Somehow it wasn’t enough of a challenge any more. I’d changed so much, been freed from my self-imposed anxiety shackles, found strength that I never knew existed and I needed to push myself, to learn, to grow.
I went to job interviews for the first time since I was 18 years old, and somehow it wasn’t scary; it was exciting.
A New Era
Amazingly, within a few weeks I’d been offered the position of Marketing Manager at DisabledGo. I was ecstatic – I had the opportunity to work for a leader in the industry that I love, and to focus on my passion for writing, blogging, website and social media management and so much more.
Once I’d settled in there was even more change on the horizon – DisabledGo was to rebrand to AccessAble. A new brand, website, mobile App, social media channels, marketing materials, the list was endless! It’s been an intense first 6 months and, having previously spent all of my working life in the charity sector I had a lot of new things to get used to, but I’ve loved it. My colleagues are lovely, I’m working alongside my best friend at Surfr (shameless plug, if you need any digital marketing support these guys are the biz) and we’re on a mission to really change the lives of disabled people. AccessAble has successfully launched and has an exciting future ahead. So far I’m most proud of building our tribe of AccessAble Champions – amazing bloggers and vloggers who are out there using AccessAble’s website and App and shouting about it. Read about them here and here.
Travels
Fear not regular readers, I know you come here to read all about my travels as a wheelchair user. Now obviously they’ve been a little different this year – I spent January-April going down and back up the M6 to Manchester daily – but there has been some highlights as well.
Cosy Croft Bungalow in Derbyshire was our first weekend trip, in late September. Read my blog post with photos of their stunning new sensory garden
In October, once Darren had been cleared for flying we had a week in Fuerteventura, Canary Islands. Our first beach holiday in four years! We stayed at the wonderful Elba Sara Beach & Golf Resort in Caleta de Fuste where accessibility was perfect for me. A huge bedroom with wet-room shower and the biggest balcony I have ever seen! Happily we did nothing but sunbathe, read and eat and drink far too much.
In November we had two trips, firstly Homelands Fife gifted us a weekend stay for some R&R (thanks to lovely Jan and the team). Their self-catering lodges are high-end accessibility meets luxury; functional yet beautiful. Take a look at the photos from our trip on my Facebook page.
Our last trip later on in November was to Cromer in Norfolk, to stay in a gorgeous accessible cottage called The Anchorage. Loads of thought had gone in to the accessibility - I find the little touches really make a difference. Very sensitively adapted so it didn’t feel medical (because nobody wants to holiday in a hospital). When the cottage was being renovated last Summer, the owners found an Anchor (pictured here) buried in the garden. Hence the name! I’ll be posting a full review of our trip soon.
Looking Forward to 2019
All things said and done, I won’t be sad to see the end of 2018, and go in to a new year full of hope and happiness. I’m planning lots more travels, some exciting updates to the blog and I hope to be writing more regularly again.
Darren’s recovery is progressing well, and we’ve enjoyed the most special Christmas, feeling truly blessed to have each other.
2018 has taught me to never take anything for granted, to appreciate my normal, and to love, unconditionally.
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One of my favourite places to stay is Croft Bungalow in Birchover, Derbyshire. I returned last month for the third time, to see the latest addition to this accessible cottage – a stunning sensory garden.
The bungalow itself has been tastefully adapted and is well equipped; a perfect countryside hideaway, home-from-home. Get all the details on Croft Bungalow’s website.
The addition of the sensory garden which has been made accessible not only for those of us with mobility requirements, but also has carefully thought out tactile, colour and scent areas (my dog Poppy loved those!) and a beautiful cascading water feature made from local stone providing the sound element.
I was incredibly lucky to catch the last of the September sunshine in this gorgeous setting.
Do you have a favourite accessible holiday cottage? Let me know in the comments.
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Travelling as a wheelchair user can be stressful, worrying and sometimes disastrous. But it can also be exciting, empowering and absolutely wonderful. There’s no fail-safe way to ensure everything goes to plan, but with a little extra care and attention it is possible to survive through the bumps in the accessible travel road, and thrive on the joy that the journey brings.
Right now I’m researching my next holiday. That makes most people say "Yay, holiday planning, how fun!"… No. It’s stressful, it’s time consuming, and more than once I’ve shut the laptop down in a fit of frustration and consoled myself with chocolate (too many times, actually – beach-ready body mine is not.) I’m a difficult customer when it comes to travel; I’ve spent years working in the industry and heard a million horror stories of accessible travel gone wrong. I know exactly what I want out of this holiday, and balancing that against what I need means that I’m struggling to find the perfect hotel. But I’ll persevere, possibly make a couple of compromises, and eventually find the right place for a week of autumn sunshine.
And then the fun will really begin! Making sure that I get an accessible room which actually is accessible, that the airline will assist me and not obliterate my wheelchair, that I can get travel insurance that doesn’t double the cost of my holiday… etc., etc. So I thought I’d share my tips for surviving wheelchair accessible travel, and ultimately getting the most out of your holiday.
Research, research, and research some more
Information is power. If you only do one of the things mentioned in this post, make it research. Yes, it can be frustrating so arm yourself with a treat – a glass of wine, a bar of chocolate (family-sized, in my case) and spend some time web searching, guide book reading and asking for recommendations.
I use a combination of specialist accessible travel websites, TripAdvisor, Facebook groups and good old Google.
I’ll start with a destination or two in mind, ask for recommendations from friends and on Facebook groups, see which hotels are noted as being accessible in that area, check the hotel’s actual website and/or a listing site that goes into detail on accessibility to make sure it broadly meets my requirements, and then cross-reference with TripAdvisor. From there I’ll build a shortlist, and contact the hotels directly to confirm accessibility in writing and photographs – this is very important as things can get lost in translation if you’re travelling internationally.
Then it’s about checking the nice-to-haves – is it close to the town/restaurants/beaches, do I like the look of the dining options, can I get a spa treatment?! Ok, I’m high maintenance.
And then I repeat the process looking for transport options, things to do/places to visit, restaurants and most importantly cocktail bars. TripAdvisor’s forums and Facebook groups like the Accessible Travel Club are invaluable for this kind of local information.
If all else fails, simple Google searches like ‘wheelchair accessible hotel in…’ ‘mobility equipment hire in…’ ‘wheelchair accessible airport transfer in…’ usually yield some results.
If the thought of spending hours doing your own research fills you with dread, there are websites and companies out there who can help.
If you’re travelling in the UK, DisabledGo list loads of hotels and places to visit which have all been assessed in person (yes I work for them but honestly I don’t know of any other company that has quality, factual accessibility guides to so many venues – 125,000+!)
For international travel, there are a few specialist tour operators who I’ve worked with over the years who really do know their stuff. You might pay a little bit more to book through them, but they’ll save you hours of time and give you the extra confidence that comes with knowing you’ve used an expert. Accessible Travel and Leisure, Enable Holidays, DisabledHolidays.com and Limitless Travel are all doing amazing things.
Document everything
If you’ve gone through the painstaking hours of research, make it count and keep written and photographic evidence of everything you’ve arranged. As well as your standard travel tickets and confirmations, have copies of any emails with hotels, transport operators, equipment hire providers and tour companies.
Have a copy of your wheelchair manual – and if you’re travelling by air with a powerchair or add-on, documentation to say that the battery is flight-safe. I also take a copy of my medication prescription, and a letter from my GP stating that I need a particular seat on the plane. I book airport assistance well in advance, and confirm all of this at the time of booking, but find that having a written back up gives me peace of mind – as well as something to fall back on if arrangements don’t go to plan.
For more advice on flying, read my Top Tips for Accessible Air Travel
I have been known to travel with an enormous folder full of paperwork – but if you can keep it all on a smartphone or tablet it’s more manageable – and you’ll save your precious hand luggage weight for duty free essentials.
Ensure you’re insured
I know that travel insurance for those of us with pre-existing conditions can be hideously expensive, and that it’s frustrating to have to pay extra to declare a condition which may actually have no bearing on your ability to travel. But I always ask myself, can I afford to lose the cost of my holiday if I have to cancel? Can I afford to replace my wheelchair if it gets damaged beyond repair? I definitely can’t. So I have an annual wheelchair insurance policy that includes travel, and a separate travel insurance policy on which I declare my Cerebral Palsy.
Specialist insurers dedicated to covering pre-existing conditions are usually cheaper, and some of the comparison sites now offer the ability to search for inclusive insurers.
Protect your equipment
Up until last year, I travelled with a bog-standard NHS provided folding manual wheelchair, and to be honest I wasn’t overly concerned about it getting damaged. Maybe I was just lucky but it had never happened to me. Then I bought my first privately funded chair and power pack, and, oh – the anxiety!
I bought a top of the range hard shell suitcase for the power pack, covered it in fragile stickers and took literally everything detachable off the chair and on to the plane with me. I also photograph my chair before the flight, as evidence in case there is any damage when it comes back to me.
If the worst happens, make sure you report any damage before you leave the airport, and ask the airline to provide a repair, or a replacement rental wheelchair.
Allow time for delays
Sometimes we all have to travel on tight schedules, but if you can, allow time in your itinerary for disruptions.
My last holiday was a 3 night break, with a packed schedule of train travel and places to visit at the destination. Add in a two hour flight delay and the resulting exhaustion from all that waiting around, and it meant I had to cancel part of the trip.
I was really disappointed (and emotional, I have been known to sulk!) so next time I’ll make sure I plan at least a few hours of down time just in case.
If things do go wrong, give yourself a break
I said it at the beginning of this post – there’s no way to guarantee everything will go to plan. On one our annual wedding anniversary trips, Darren and I faced a flight delay, a very inaccessible ‘accessible’ room, a missed train and a day of torrential rain. And I was so mad at myself; accessible travel is my job, I’m supposed to know about this stuff!
But then I reminded myself that I was in a beautiful place that I’d never been to before, with new experiences just waiting to be discovered. Perfect or not, we still had an amazing time and have memories of yet another adventure, good and bad.
Now, who’d like to research my next wheelchair accessible holiday?! I might even share my chocolate supply :-)
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After 13 incredible years at Tourism for All, the time has come for me to move on.
As you may know, I’ve had a difficult start to the year. On New Year’s Day my husband was hospitalised with life-threatening pneumonia, and after many treatments and complications, and against all the odds, he came home on 24th April. I’m happy to say he’s going from strength to strength in his recovery, and we’re looking forward to an exciting future together.
The thing about experiencing such trauma, is that it really does change you as a person, and make you realise what is important in life. So when I was given an opportunity to make a big change it just felt so right.
I joined Tourism for All as a relatively inexperienced 18 year old, and quickly realised that working in accessibility, helping fellow disabled people to enjoy travelling and get the most out of life is something that I love. I discovered my passion for writing and sharing my own travel experiences to inspire others. Throughout my time with the charity I’ve been given so many opportunities to learn and grow, and always been encouraged to use my initiative to reach my goals. For this and so much more, I will be forever grateful. I’d like to give a personal thank you to the two Chief Executives I’ve worked under – Jenny Littman and Ray Veal – and to everyone on the board of Trustees, for all of their support. I’ll be handing over the running of the Information Service to Ana Crome – a talented young lady who joined Tourism for All as an office volunteer last year – who I know will look after Members and Partners very well.
I’m delighted to announce that I’ll be joining the team at DisabledGo, as their new Marketing Manager. In recent years I’ve discovered a talent and passion for marketing – website and social media management, writing, blogging, networking and even the occasional TV interview. I’m so excited to have been given the opportunity to focus on all of that and more, in the industry that I truly love. I’m looking forward to learning and growing even more; working for an industry leader, within a dynamic team of dedicated colleagues. DisabledGo’s mission is to empower disabled people by providing independence and choice, and I’ll be getting involved in projects that really shout about that, and maximise opportunities for everybody.
My last working day with Tourism for All will be 8th June, and my first day with DisabledGo 11th June. If you’d like to keep in touch, you can reach me by email on contact@carrieannlightley.com.
I’ll still be writing regular blogs, and you’ll hear from me again soon with an update on my new job, life and travels.
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