Whilst at primary school I learnt to ride on horses owned by friends. My mom has always loved horses and was quite an accomplished rider herself as a youngster. So, it seemed obvious that I too should learn, spending time with my friends at their paddock, having fun trotting around the fields.
I was small enough and light enough to be thrown up onto the saddle. I’m not delicate so I didn’t mind. A few bruises here and there was worth the enjoyment.
I was good too. Considering at that time I could only walk around my home or the classroom, and I had noticeable scoliosis. When on horseback I somehow sat up straighter than ever.
This all came to a stop rather abruptly, not because of my disability, but due to the fact that I suddenly developed an allergy to the horses! Yes, laugh it up. It really is so ridiculous it’s funny. Literally overnight I couldn’t go near them without streaming from the eyes and sneezing uncontrollably.
I’m thankful…that I was fortunate to have had that experience at all. Many with muscular dystrophy are unable to take part in such physically demanding activities.
Despite my rather comical allergy, I too am no longer able to ride horses due to the progression of my condition. As much as it would amuse onlookers, if I were to try now I’d simply fall off and land in a heap on the floor!
Imiss…not having to worry about catching every virus circulating throughout society.
Our school days are spent often in damp, stuffy classrooms surrounded by snotty, sniffly kids. Coughs and colds are unavoidable.
When I was at school no one bothered with antibacterial hand gels or antiseptic wipes to contain infection. This was back in the days when disposable tissues weren’t commonplace. I remember my dad sending me off with a handkerchief shoved up the sleeve of my school jumper. How hygienic!
But I never worried. Obviously no one wants to get ill unnecessarily. But back then, if I did catch the latest cold I’d struggle for a week, taking time off school (silver lining!), and after a course of banana medicine (who remembers?) I’d be fine again.
I won’t lie, I did suffer a few bouts of pneumonia throughout my childhood, for which I required hospital admittance. But again, back then there were no complications. I got ill, I sought treatment, and I recovered without much concern.
These days, the struggle is much greater. As my condition deteriorates, the ability to fight even the most trivial of respiratory infections becomes much more difficult. Treatment is much less straightforward and not without complications. Recovery time seems to extend with every illness. Hospital stays are much longer and far more stressful not only for me, but also my family and the doctors who try to fathom how best to care for me.
I now take every precaution possible to avoid contracting viruses. A slight sniffle for the average Joe can quickly develop into something very serious for me. For those of us with muscular dystrophy, a cold is never JUST a cold.
I’m thankful… for my family.
I’ve said this before but I really am incredibly fortunate to have the family I do. There’s only a few of us – I have no aunts, uncles or cousins. But we are a close, loving and supportive unit.
It may seem harsh to say, but friends, especially those from childhood whom I don’t see too often – people grow up and move on – don’t really understand how my muscular dystrophy affects me. They see me on a good day and assume that’s how I am all the time. Unlike my family, they don’t witness me at my worst, nor do they see the progression.
Don’t get me wrong, I appreciate all my friends. It is by no means through ignorance that they can’t comprehend just how fragile my body and health is. I just think that unless you live with it yourself, or with someone like myself, you can’t fully grasp the situation.
Unfortunately muscular dystrophy is not a widely recognised condition. If you approach someone at random, they’re unlikely to have even heard of it. Neuromuscular consultants and specialists have limited knowledge, particularly of lesser known forms such as Ullrich, which is what I have. So sadly, we have a long way to go in raising awareness within society.
It is for this reason, that I feel so secure in the knowledge that my family are always here to support and care for me, no matter what. No one understands the struggle, the fight, the fear like my family. And I do include medical professionals in that statement! In my experience, doctors don’t always know best. When the shit hits the fan, I know I can rely on family to do what is best for me. I do not take this for granted.
Though I would like to be, I’m not a frequent traveller. Living with a physical disability – in my case, Ullrich congenital muscular dystrophy – can make overseas travel difficult and stressful. However, after several years without a holiday (neither at home in the UK or abroad) I decided it was about time I set off in search of sun, sea and sand – a sight unseen here in the Midlands!
Most importantly, the holiday must meet all my accessibility requirements, (I am a non-ambulant, powered wheelchair-user). Another major consideration was my parents, with whom I would be travelling. This presented me with the task of organising a holiday that would satisfy their wants and needs as well as my own.
Of course, it’s far from ideal to travel with your parents at my age (27), but it was my only option at the time. I resisted their considerate invitations to accompany them abroad for years, but I had reached the point of desperation – one way or another, I really needed to get away. There’s only so much British weather a girl can take!
Planning & Booking:
7 years earlier, I visited Tarragona, situated in the Costa Dorada region of Spain. I found it to be a great place to roam around in a powered wheelchair. Back then I booked with Enable Holidays.
For personal reassurance regarding reliable accessibility (and frankly to make life a little easier), we decided to return to Costa Dorada. When comparing prices online, I found it significantly cheaper to book with Disabled Access Holidays (DAH) – a small business based in Glasgow, UK.
Throughout the whole booking process, I interacted with the same agent who sorted everything. Airport assistance and wheelchair accessible taxi transfers were organised. An electric wheelchair was also hired for the week, as I prefer to travel with just my manual chair for fear of damage to my Quantum 600 (I’ve heard horror stories from fellow wheelchair-users).
The only thing I had to arrange was travel insurance for myself. DAH recommended AllClear, even offering a discount code. I enquired with a few providers though they all quoted a similar price. Just one week in Spain would have cost me over £500 and so, admittedly, I chose to take the risk and travel without insurance.
Off we go…
We flew from Birmingham airport on 7th July (2016), arriving in sunny Reus after a thoroughly chaotic checking-in and boarding process. Conveyer belt malfunctions, lack of staff, delays and the absence of assistance at Birmingham established an initial sense of unease.
What really frustrated me was the fact that we boarded via the centre of the plane – my parents and I being made to wait until last. Since our seats were at the front of the plane, I had to struggle some distance in an old aisle chair, bumping elbows with strangers all the way (bear in mind, I’m pretty damn petite). I can’t stand these cronky aisle seats, mainly because they offer no postural support whatsoever and are incredibly uncomfortable. My balance is poor and consequently I always feel I’m about to fall when forced to resort to one.
Upon reaching our front row seats, my poor Dad was left to manually transfer me by himself, as no one offered to help. There was a complete lack of care and consideration from all staff at Birmingham.
A short and uneventful flight ensued. This was one of my major concerns when organising the holiday. A long haul flight was a no-go as there’s just no way I would be able to access the bathroom. With the best will in the world, in my case it really can’t be done.
Disembarking at Reus:
After the disappointment at Birmingham airport I was relieved to receive a much more conscientious service when disembarking at Reus. The assistance for passengers with disabilities was swift and effective. Without question, the staff safely lifted me from my seat straight into my manual wheelchair which was brought to the front of the plane where we exited, this time without an audience. I was so thankful as I hate to have to burden my parents with the physically exhaustive task of manually transferring me.
Our pre-booked taxi transfer was at first nowhere to be found but soon arrived after being prompted by a phone call. The English speaking driver was extremely helpful and repeatedly assured us that she or another driver would collect us from our hotel at the time and date arranged.
And so we found ourselves at the Medplaya Piramide 4 star hotel in Salou, Costa Dorada. The three of us shared one, accessible room situated on the second floor resulting in a daily battle for the lift which everyone felt the need to use, regardless of age or ability.
Aside from the presence of a grimy shower chair with one, dismembered footplate, it’s difficult to see how our room could be considered ‘accessible’. The bathroom comprised a regular bath along with a roll in shower which flooded our entire room and out into the hallway within seconds. The bathroom door veneer was all peeled away suggesting this is a long term issue which the hotel has failed to address. We had to call reception for extra towels to mop up the excess water flooding our room after every brief shower.
Furthermore, the sink was far too high and unreachable for me to use whilst sat in my chair. The toilet was lower than normal and lacked any surrounding support aside from a fairly redundant and misplaced grab rail affixed to the wall. A small lip in the patio door may cause an obstacle for some in accessing the sizeable exterior balcony but with a bit of a run up I didn’t have a problem in my hired power chair.
The hotel itself, both interior and exterior, I found to be suitable for anyone with a disability. With smooth, flat surfaces, ramp access where needed, wide open spaces to manoeuvre, and a large ground-floor disabled loo, I was able to roam around completely independently. There’s also a pool hoist – a clean, fully functioning pool hoist!
With plenty to keep you occupied including a bar, restaurant, pool room, terrace area, as well as day and night-time entertainment, this modern hotel caters for all ages and abilities. The staff too were welcoming, sociable and most accommodating.
There are some steep pavements surrounding the hotel to be aware of, but plenty of slopes and access points more than make up for this. The hotel is ideally situated, just a short stroll to the impressively accessible Levante beach, 250m from Salou town centre and 1.5km from Port Aventura theme park. The area for the most part is flat and even, making it ideal for wheelchair users.
I have to say the major selling point for me was the beach. Though not an experienced traveller, of all the beaches I have ever visited this one is by far the best. It’s vast, it’s flat, and there are numerous platforms which allow wheelchairs and prams to enjoy a smooth ride right down to the waters edge. I was pleased to see many others with various disabilities accessing the sands without the all too familiar struggle.
Furthermore, the individuals who hire out sun loungers could always be counted on to offer a helping hand if and when needed. Without question they would often come running to the assistance of someone. This is not part of their job, nor is it commonplace (sadly), and so I feel it worthy of mention.
On the whole my week in Salou provided much needed respite and relaxation. However, the biggest dilemma was saved for our last day. Our pre-booked taxi never arrived so we were forced to ask reception staff to telephone for a local cab asap. This took over an hour to arrive since there is only one wheelchair accessible taxi in the local area. Fortunately our return flight was delayed otherwise we would certainly have missed our flight. Despite this rather stressful conclusion to an otherwise enjoyable holiday, I would definitely recommend Disabled Access Holidays. However, it’s also important to do your own research and investigation prior to committing to any accommodation and travel arrangements.
I miss… being able to wear (pretty much) whatever I want.
As I have aged and my condition has deteriorated, so too has my physicality. The progression of my scoliosis has caused considerable asymmetry and shortening of the torso, making the task of finding suitable clothing increasingly difficult.
These days I live in a uniform of black leggings and baggy tops, jumpers and cardigans. As much as I’m interested in fashion and the latest trends, just like most women my age, my sartorial priorities are now very different to what they were some 15+ years ago. I favour comfort, practicality and insulation over aesthetics.
I wish I could wear short skirts, skinny jeans and tight-fitting dresses as my peers do. But I just can’t, that’s the way it is. Let’s be honest though, as frustrating as it may be at times, it’s really not the end of the world!
I’m thankful… I can still put my own makeup on.
I’m not a girly girl, never have been. I’m not the type to wear makeup every day. But I am an artistic type and fairly particular to boot. By that I mean that if and when I do wear makeup, I like to do it properly. I can’t just slap it on.
Thankfully I still have the strength, grip and dexterity to apply my own makeup with the precision I strive for. I appreciate that many with muscular dystrophy lack or lose this ability and must therefore rely on others to carry out the activity for them.
I miss… the ability and freedom to be spontaneous. Once you become reliant on others for, well, pretty much everything, the privilege that is spontaneity is no longer yours. I miss my days of youth when I could leave the house in my wheelchair, not a second thought or care in the world. As a kid the worrying and pre-planning was the duty of my parents. These days I have to schedule and organise my own outings.
How am I going to get there? Who will take me? What do I need to take? Will it be accessible? Will there be accessible loos? Will the accessible loos be clean and clear of clutter or are they being used as store cupboards as many are? How long will I be there? How will I manage while I’m there? How will I get home? And so on…
Even the days I don’t go out require consideration. I can’t be really lazy and lay in bed all day if I want to because I rely on carers, and they need to know what time to arrive. I can’t sit up all night or have friends round and socialise without wondering what time they’ll leave because again, I need a carer to get me ready for bed.
My life these days is very routine, very monotonous and very regimented. My mind, spirit and personality however is not at all regimented, disciplined or cautious. There are times I desperately wish I could just rise from my chair and run out of the house, to nowhere in particular. Just run: me, myself and I. Complete freedom of body and mind. No restrictions.
I’m thankful… I have my electric wheelchair which offers a great deal of independence. Until the age of 10 I had only a manual wheelchair which I couldn’t self propel and was therefore dependant on others to push me wherever I wanted to go. Many times though I was positioned awkwardly or simply abandoned somewhere I really didn’t want to be. Since using a powered chair, there’s no way I could return to using only a manual wheelchair. I can roam around my home and garden independently – a simple but significant pleasure. I can get exactly where I want to be when I’m out and about. Put simply, it’s a slice of freedom. It’s not the same as having a fully functioning body, but I certainly count myself lucky that I have my electric wheelchair as I know not all who need them, have them.
I miss… sitting on the floor and being able to roll around and play with my dog. As a kid I moved around the ground floor of our home pretty swiftly on my bum. But as I’ve aged my scoliosis has become more severe, thereby affecting my balance and posture. This makes sitting anywhere that is not suitably cushioned and supported impossible these days. Sometimes I swear the dog looks at me as if questioning why I won’t get on the floor and fuss her.
I’m thankful… I still have a dog! She’s getting old but still has her moments of sprightliness. She’s 13 now which is a good age for a Labrador. I know she hasn’t long left but she’s seen me change so much over the years. She’s been here through the good days and the bad, her loyalty never faulting. When I’m ill she’s a constant presence, a source of unconditional love, comfort and companionship. I truly believe in the healing power of a beloved pet.
I miss… midnight snacks and being able to sit myself up in my electric bed to have a drink during the night. Since starting nocturnal NIV (non invasive ventilation) this small pleasure has become practically impossible since I have a mask bound tightly to my face. Drinking is possible with a nasal mask but eating is very difficult as there is an increased risk of aspiration.
I’m thankful… I can eat whatever I want and am still able to feed myself. Unlike many with muscular dystrophy, I don’t have a PEG feeding tube and so all my calories and nutrition comes from the food I put in my mouth. Although I get very full on small quantities of food, I do like to go out for meals with family and friends.
I miss… sitting in cars on a car seat, particularly the front seat, rather than having to travel in my wheelchair. These days I have to travel in my electric wheelchair at the rear of my Motability vehicle, as transferring is just too difficult.
I’m thankful… for my wheelchair accessible vehicle which allows me to get out and about with ease. I no longer need to be manually lifted in and out of cars. It makes life so much less stressful.
I miss… playing my clarinet, which I can no longer play due to my declining respiratory function (I was pretty good too!)
I’m thankful… that having now sold my clarinet, someone out there is learning to play and getting as much enjoyment out of it as I did. Plus I’ll always have the knowledge of that achievement. I LOVE music and listen to some form every single day, though I’ve never been a natural musician myself. So to have learnt to play an instrument to a good standard is something I’m proud of.