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 and 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 your 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 buried in the garden. Hence the name! Read The Anchorage, Cromer: Access Review
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.
Despite subscribing to your wonderful blog for a while now I only just read this. It is beautifully written with poignant messages. Power to you both for your continued journey through life together xo
😘💖
Leanne