Limping back to our hotel room from the pool, I felt the sting of hot, angry tears coming on.
I’d spent months having physio and invasive treatments to be well enough to go on holiday. But now, as the pain of a few simple steps reverberated through my hip and pelvis, I swore I wouldn’t do this again.
Before the pandemic, a summer holiday was a forgone and exciting conclusion for many Brits.
But four years before Covid landed on our shores and threw the travel industry into chaos, I had already decided to restrict myself from setting foot in another country. The reason? Overwhelming physical pain, immobility and disability.
I have severe endometriosis and a chronic hip issue, and – even though I have had eight surgeries across both ailments – neither is fully resolved.
Endometriosis is incurable so I live with the inflammation, internal damage and pain. And, though the area of concern inside my hip joint is now repaired, the major muscles around it have atrophied (wasted) through years of dysfunction, while the tendons and other structures have become chronically inflamed.
I was diagnosed with endometriosis in 2012 after an 11-year delay. My hip condition was ignored and dismissed throughout my pregnancy in 2016, but finally confirmed months after my daughter’s birth.
I’ve lost count of the steroid injections I’ve had into the tissues over the years, the hours of physio, aqua therapy, acupuncture – and everything else in between – to try and regain my mobility and reduce the remaining dysfunction. But the reality is that it’s very hard, if not impossible, to get my muscle back to normal function.
And so, my cycle of immobility and disability continues.
Between my two conditions, walking, sitting, and standing are very painful for me. On most days, one or all three are simply not doable. In fact, I’m writing this copy on my back in bed.
My daughter Amelia, now five, is more empathic and understanding than children twice her age, often coming to my aid when I can’t move, bend down, walk or complete a task. Not that I want this life for her. I never want her to be a carer for me and I hide my pain and disability from her the best I can. But when you live under the same roof as someone in chronic pain, it’s an uphill struggle to keep it out of sight.
When you apply the combination of immobility and pain with the arduous task of getting yourself and a small child packed, through check-in, passport control, duty-free, to the gate, on the plane, around the luggage carousel and transferred to a hotel… the appeal of a beach holiday falls off a cliff.
For me, there is no relaxation to be had because I am already done in by the time we’ve made it to the check-in desk.
I was once again on the sidelines, watching my child’s core memories being made without me
All I see when I think of holidays are barriers: How long I have to stand, sit in the car or on the plane, how far I have to walk to and from the gate (spoiler: I physically can’t do it), all the chairs and beds that I won’t be comfortable on… it feels impossible and, frankly, not worth it.
I came to this conclusion after the last holiday abroad I went on to Lanzarote with my husband Andy and Millie in July 2018.
It was so physically painful I told my husband I’d never go abroad again. I was limping and in agony by the time we’d checked into our hotel. During the week we were there, I felt miserable.
The trip there alone had used up all my strength, tolerance, mental fortitude and flipped me into an aggressive pain flare. Every waking moment was spent in white-hot pain – in my legs, back, pelvis, and left hip. I didn’t enjoy the holiday and my husband had to take care of any physical task with our daughter.
I was once again on the sidelines, watching my child’s core memories being made without me: that afternoon stroll on the beach for an ice cream, splashing in the pool, those squeals by the seaside. It was soul-crushing being an observer once more, instead of getting stuck in and doing those typical holiday activities with my little family.
When we got home, I spent months having physical rehab and invasive treatments, just to recover from those seven days in Lanzarote. I couldn’t walk, couldn’t sit, couldn’t sleep, and found it hard to tolerate life. My increased pain left me trapped at home, unable to work when I needed and made my anxiety soar.
I decided that the physical penalty for travelling was just too high for me. Andy understood and was entirely supportive when I said I wouldn’t do it again.
Instead, we decided that every six to 12 months, we’d treat ourselves to a couple of days alone in a boutique hotel, or a hot tub cottage, somewhere within 90 mins drive of our home in the Midlands, leaving our daughter with grandparents or trusted babysitters.
We paid a lot of money for high-end hotels and chose ones that only had thick, padded comfortable chairs within a reasonable driving distance of our home. Andy did all the moving of luggage and often packed everything for us both at the end.
These breaks scratched the holiday itch enough to not make me miss the summer holidays.
But last summer, Millie asked to go to the beach. I was instantly filled with dread. How could I fulfil her simple wish without damaging myself physically, or causing a flare that would last a few weeks and disrupt my work, life and sleep? I couldn’t deprive her though, so I bit the bullet come hell or high water.
On what should have been a boiling hot July day, we drove two hours to Cleethorpes. However, it was so windy and overcast I sat with a coat on and the temperature never went above 15C.
But, despite the rubbish weather, Millie buried her legs under mounds of sand shaped like a mermaid tail, joyously won 2p coins in the arcade, ate candy floss, fish and chips and rounded the day off sticky with ice cream, with sand in her hair, all wrapped up in her Daddy’s hoody. She’d had the time of her life and snored all the way home.
The four hour round trip did put me in bed for two weeks, due to hip pain and inflammation, but it was worth it to see her joy.
Now, as the promise of summer holidays loom into view for Brits, I’ve had a change of heart about going abroad because I don’t want to let my disability deprive my child, the way it has me.
While Andy and I get our fix with a couple of days in a nearby hotel, what about Millie? We could do a UK holiday but we all crave a bit of sun.
So, this July, I’m giving the old package holiday another go because being disabled shouldn’t mean I miss out on holidays, or that my little girl should spend years without experiencing the joy of sand between her toes and some proper sun on her face.
She’s so excited, she’s picked out three bikinis and a rubber ring she wants to use in the pool and asked us to teach her how to swim. I’d planned to do that when she was a baby but I’ve never been well enough. Guess we will have to figure it out now!
Andy helped me find a hotel that works for me in Gran Canaria, called TUI Blue Orquidea. It isn’t one of those mammoth hotels that take 20 mins to walk from one side to the other – something I absolutely cannot do.
It is compact, with our room as close to the lobby as possible, a beach within spitting distance of the pool, comfortable seats all around the hotel, and it takes just over 15 mins to get there in a private transfer from the airport.
Andy went ahead and requested special assistance for me through the airport so I don’t have to worry about the very short distances I can walk. I’ve been too embarrassed to use this service before or thought it’s better saved for those already in wheelchairs or with walking aids, but they are for those with invisible disabilities like me too.
All of these choices will give me a snowball’s chance in hell of at least getting from my home to the pool in one piece. How much pain I’ll suffer on the way or once I’m there – or back in the UK – remains to be seen.
This holiday for my family is also different in that my parents are coming to physically support us. The last time we went alone, I felt immense guilt at my inability to give my husband a rest.
This time, there are two other adults on hand to help get things done as well as share this special week with Millie.
But I’m not alone in my reservations about travelling abroad. Over 14million Brits are disabled, and one in five live in chronic pain. Surely, we should be able to have holidays every now and then too?
I’m finally putting aside my inward (and unfair) sense of shame at needing to holiday with my parents at 35 in the hope that I will feel alive again, rather than just surviving.
So many people live with the physical restrictions I do – and worse – and I’m hoping by being braver, asking what for what I really want, taking the help and accessibility support available instead of cutting myself – and my child – off from the beauty of the world, our lives will open up again.
I’ve long spoken to Millie about my desire to see the beautiful Sequoia forests in California, and my hope to see her marvel at the magic of Disneyland. She really wants that too.
Maybe if this trip goes well, I will allow myself to plan accessible trips to those destinations too and make both our dreams come true.
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