Travelling anywhere now feels like such a blessing. Grateful for every new avenue that opened up, we all yearned for so long to be, not only; anywhere-but-the-village; but anywhere-but-the-sofa. The world had closed it’s pathways, as we peered through windows, marooned, masked and frightened, shrouded in uncertainty as to how we might ever explore distant shores again.
Time inevitably stumbled on, pandemic, what pandemic?
Here we are now in Antalya, Turkey . And as far as we can see, there isn’t a mask in sight, There is no social distancing and no body parts have been sanitised.
It is quieter than expected here. The British school holidays haven’t begun yet, impacting on how many older children there are here. A bonus in swimming pools to oneself!
This is an all exclusive offering all the usual facilities, a very smart and organised hotel. It is beautiful, one of the cleanest and friendliest hotels we have been to. And it is is enormous. There are several pools, the hotel has its own beach and jetty, and there are even a selection of hotel cats who are allowed on the furniture.
Nobody has body swerved us in a queue or ducked away from a tickly cough. It almost feels as if, life has pretty much gone back to normal for a traveller. Only of course if you travel with mobility issues: you are often still faced with exactly the same old problems.
This holiday began well. Newcastle Airport was brilliant. The lady at the car drop off offered to take our trolley in for us, the desk wasn’t open but the staff offered alternative seating and the assistance service was as usual kind and efficient. The man pushing the wheelchair even waited for her majesty to choose perfume in Duty Free. (no, not me) Now that’s beyond his usual job remit!) .
Just like Covid19, an illness, pain or a disability can be invisible until it isn’t. People easily make snap judgements on your demeanour and your look and often don’t know you are sore. Yes, that’s a compliment in a way, but it is a constant red herring. The invisible smiling armour you must apply can wear thin very quickly as fatigue and pain begin to creep in. Travelling is way harder with mobility problems.
Maintaining your own style, your personality, your way of keeping organised is essential for anyone’s self respect. Which as we all know is a full time job you have to make look effortless. While most people are contemplating their airport look, the newest novel, the newest sunglasses ear buds and phones, your average immobile person is hoping not to miss their flight as they navigate the airport obstacle course. And still attempt a smidge of dignity after being wheeled about the concourse, riding the conveyor belt of chance and loss of personal control.
However, the important thing to remember is not the cards you got dealt, but how you play your hand. Managing being in permanent pain, being unable to simply do what others around you can, takes all your will power not to be sad about. Feeling powerless can be a choice though. To travel happily, one must accept our changing needs and how to best accommodate them.
Unless people know you, if you look well, you might look like you can manage.
When I first got ill, it was confusing. Even family ignored the level of pain I was in and the various and contradictory diagnosis I was receiving. If you don’t have an obvious fixable thing that can be operated on, many people believe you are simply making up your illness. Auto immunity conditions, rheumatoid and osteo arthritis, lupus these are real and they really do hurt. Operations leave scars, scrape bones horribly, leave us needing more support as joints deteriorate. Unfortunately much of the change is internal and tricky to fully fix. At best we create a damage limitation plan, at worst if we aren’t careful we can easily give in to its decay. For me that was not an option. (Although some days are far far harder)
Somehow, accidents and operations are easy to give empathy for. The stealthy, creeping deterioration of disease is a greyer area. It is hard to describe how I can’t walk more than a few feet sometimes, and with warmer air and another day I might get around the block with my sticks and our dog, Bear. It isn’t very sexy having an arthritic condition. Almost without warning your day’s potential changes; from looking not too bad and covering all with a smile to a sudden crippling fatigue leaving you stranded in pain, and making you want to weep. But it is true to say, the weather helps and a holiday was essential.
So, we arrive here having requested assistance at each side of the journey. The airport assistance had pushed me with one hand whilst pulling another man with his foot at breakneck speed through the airport. Whilst she ran to keep up. He then tipped me out at baggage reclaim. Once we had finally found our cases, sadly trundling about last (as we were first on) , we made our way to the door, having been told a rep would great us there and help get us to the hotel. There was no rep, it was midnight, hips had seized up, and everyone but us was running towards a coach.
The distance was horrendous, far longer than I can ever walk. But to add to the pain, a coach of waiting tourists, an anxious child running back to me every five minutes to check and the knives in my hip bones, found me eventually in my seat in tears. This wasn’t how I intended to start my holiday.
Having to ask for help is the worst thing when you actually need help. At your lowest, the absolute last thing you want to feel is that you have no power left, no dignity, no ability to care for yourself. Unfortunately, some of these things can be true, and what you need more than anything is a mind reader who knows your needs before you do, sees you as a real person still and does not make you feel guilty for asking for help. The trickiest of ages for a carer is a teen . Without going into detail, let’s say their heads are elsewhere and the world only includes their own image. A natural stage indeed but travelling with one relies on a travel structure as well as teenage hormone fluctuations.
On our way to the hotel There was no actual rep, just an envelope thrust at each party. Perhaps this was the new normal? Maybe things would be alright once we could finally unpack.
Once in the hotel, despite having organised a disabled friendly room, one near a lift, in the main block, we were told it was (vague hand gesture outside). We were led through acres of garden, the walking sticks making little difference to our young bellboy, to a very far away building at the edge of the complex. The young lad pulling our cases was nice enough, but it just felt like again, I was apologising for being slow or unable and it was agony. The moment the door closed was the last straw for us both . This room if it was kept would be a prison- too far from anything to enjoy. Cue a meltdown of epic proportions ( both) although mine was rather less blasphemous) and a promise that this would indeed not be our holiday spot.
But it was one o’clock in the morning and, “Yes, I know we can’t fold t shirts into cubby holes, and put our make up on the counter, but that can wait a couple more hours; now stop shouting and go to bed.”
The next day took another six hours to rehouse us. What that meant was not being able to properly access medicine, toiletries and swim stuff, and not relax into the holiday. And that isn’t good enough. Because there are thousands of spaces in this hotel, and (from what I could see) very few people with additional mobility needs. This had been booked due to the proximity to facilities, and I had specifically asked for assistance support. She had to get special permission to be out of school as a young carer too.
The new room was exactly what we needed and finally we could get settled in. Any complaints fizzled out as the staff throughout the week were attentive and polite.
Drawing attention to what can go wrong for a traveller will. I hope, make organisations better listen to us. Luckily, on this occasion it was tiny details in the big scheme of things which could have improved our experience massively. The holiday company booking us were asked all the right questions and knew specifics.
For example, there is a steep set of stairs here to the low pools and beach. Although the hotel has every available amenity; most involve walking. There aren’t very many accessible poolside loos, meaning one must plan for each potential route each day. As a self service all inclusive, it would be helpful to have ways to carry food to tables in the restaurant, or to make accessing the various food and drink spots easier for anyone not able to traverse the resort. To enjoy an evening drink in the room involved a complex system of separate ice, mixer and vodka, and a (not always) compliant assistant. Although a little sugar bribery goes a long way ..
Tracking down our rep by phone eventually, we asked for trips suitable for low mobility guests. Initially before he met us in person, he said there were none. ” Only if you can walk. ”
It is easy at this point to just give up. But lying in heat all day doing nothing is not our thing. So we met the rep in person and he got more of an idea of our situation. We booked an excursion to various stops in one day, including a river cruise. By the end of the day, I truly could barely move, but we saw enough sights to justify the pain, and managed some discount shopping too.
The hotel offered a spa service with several types of massage. When letting them know I needed a gentler type of massage, they insisted it would cost double because it was a special child’s massage because I am disabled. I cancelled that reservation. Paying double for half an experience seems daft. So instead we went to a traditional Hamam and had the full Turkish Bath experience. I declined the hot stone extra that could fix my arthritis for an extra £35 euro.
A few tips on travelling with health or mobility issues
It goes without saying that most people managing an illness or disability have to be fairly organised. Or they have a carer who is. Making sure everything you need for the day is not only packed but accessible. If you were your carer what would you give yourself?
Traveling is a great way to discover different areas, cultures, and cuisines. When it comes to traveling with mobility issues, planning a trip can feel overwhelming; however, it just takes some planning in advance to set your travel concerns at ease.
Plan in Advance
Call your airline, bus, trains, and hotels ahead of time to discuss your special accommodations and figure out what amenities are offered. By calling ahead, you’re able to gain more information and be proactive about preventative issues that could occur.
Factors to consider
Reserve a seat ahead of time
Call and discuss disabled accessibility of platforms/lifts/facilities
Request a seat close to the bathrooms
Ask about storage for any special equipment you may have
Questions to ask when finding a hotel to meet your needs:
How are the rooms set up?
Is the bathroom accommodating to prevent potential falls/slips?
What in-room guest services are offered?
What additional amenities will be provided to ensure your stay is as relaxing as possible?
Additionally, consider what special equipment you’ll need, the stamina and needs of you or your caregiver, and the accessibility of sites; planning these factors prior to your trip will help eliminate hiccups.
Traveling with mobility issues can seem overwhelming when you think about all the factors at once; however, when you take the time to plan in advance, you’re able to accomplish one item of your checklist at a time and successfully plan your trip.
Knowing what help you need to ask for can be hard. Especially if you look relatively OK, sometimes pain and limitations are not so easy to see. But a break away from it all can be possible for you.
Making sure your holiday team are briefed to enjoy all aspects of your trip.
Travelling full stop relies on several things for the monkey and me. Planning, belief, patience, acceptance, and a vision of an an end goal.
To have a mobility problem can affect your sense of self. But letting those fears win is losing your ticket to adventures and possibilities. Yes, you might need help, but you can chose to how and what to accept with gratitude and know it does not lessen you as a human being.
A kernel of power still burns inside on your pain days, frustrations when you can’t access freedoms like you perceive others can, will pass and new avenues will open.
Those initial hours in the resort could have been the undoing of all the hard work of getting abroad for the first time in four years. But so too these things will pass. And each day thereafter staff were aware and helpful. Managing to get around the resort with the help of the photographer, even resulted in some pictures of us, for once not looking cold and windswept!
We all need to remember that we can make things happen if we really want them. Everyone needs help sometimes, and by letting others help you; it becomes so much more possible for them to see what you are giving to and being in the world. Pain might be your constant companion, but it can sit and wait while post Pandemic life gets a chance too.
When we are young we yearn for something dangerous, alone.
Miles from all the sanctions, structures, household rules of home.
Tempting shiny worlds appear, round corners to explore.
Day by day we inch our way, bags packed at waiting door.
Not knowing is intoxicating, Sleeping when you can.
Eating when you're hungry, only, Fleshing out vague plans.
A Catwalk of exotic friends, March in and out of view.
They draw a new exciting line, A portrait sketch of you.
As time speeds up our faces hold, Our joy and pain, our fear;
In ever darkening outlines, New lines drawn year by year.
We seek to see in strangers, the language bodies hold.
The Holy grail of loving; The rainbow pot of gold .
And searching for our tribe, We gravitate and hone-
The pack of cubs we recreate, In our revolving home .
In times on earth, we're lucky, To experience the deep,
The treacle pool of liquid love, As through our blood it seeps.
Yet I have heard from wise ones, who live a thousand lives;
That seeking self in others, is both tragic and unwise.
Inside the mirror always, From that adolescent child,
Was everything to blossom, From scattered seed so wild.
For love is pure and boundless, When given free and kind.
And holding your own value, makes love more rich, less blind.
Be loved and let the light in, Be all you want to be;
For love and life is truly lived, When your own heart is free.
It was wonderful to have a spot in a Spring craft Fair last month, dusting off the labels and the boxes and showing a range of Art prints, cards, cushions, mugs and brooches.
Storm Arwen took it’s toll on the caravan which now needs a replacement for it’s steampunk metal windows. (which I quite like!) The caravan is too heavy for me . So it has been cleaned up and is now for Sale. Do let me know if you are in the area and fancy a Summer project!
I am delighted to be able to tell you about my upcoming exhibition at Coldingham Village Hall over the next couple of months. The work will be hung over several weeks as events are on in the hall, and will culminate in a private view at the end, where sales can be taken home straight from the wall!
The Art club were asked to make a piece for the Jubilee. I gave each member a different letter to create their own style of Artwork. These were then put together as a collage on board and will be displayed in Coldingham Priory.
It’s been nice to see faces again.
Nobody is an island. Our place remains full.
Artwork was made all winter, along with many poems written. New pieces have come back from the printer to become prints, cards as well as originals.
There was even a little drama. …..
After three years, The people of the Sea Eyemouth project, finally came to fruition and we performed our show, including the film created in lockdown and Artwork made by yours truly.
And here is our art group’s display in a shop window in Coldingham.
We have new plans coming soon, but until then sending you all a big Spring hug x
Many readers will identify with the painful to watch Versus Arthritis adverts on television . Asking viewers to pledge support for those in severe chronic pain. For those suffering a myriad of fatigue inducing symptoms. I imagine these adverts are met with a variety of responses. Each according to life experience. If illness for you has come to mean an easy, specific and named condition, with a sociably acceptable set of treatments, this no-mans land of auto-immune symptoms will make no sense. Those of you with friends or relatives who have arthritis , may become interested, hoping to gain insight and understanding.
Perhaps you are untouched as yet, and believe the afflicted to be exaggerating. Perhaps you feel a few twinges and you have already begun to feel less mobile, a little weaker, and not so certain your g.p. understands your needs. How much worse does it get? What happens then?
And for those affected personally with a degenerative condition, a body that is consistently affected by weather, a slave to daily fatigue and is aging years too early; maybe your heart breaks just a little bit to see that pain, because you know it yourself and live through it every day.
Living with disease and pain is exhausting. And debilitating in more ways than just your illness.
Bad enough are the daily rituals of pain-easing strategies and positive, life affirming reminders on the fridge, when you can’t now reach the bottom shelf, but sometimes more crippling is the lack of understanding by many employers, friends, colleagues and even family of how to live with and even love with the cards you’ve been dealt .
Unfortunately, it is often those closest to you who can lack belief in the validity of your pain, or why you can’t join in family activities. Employers might lack the understanding of how to incorporate chronic pain into a hard working professional’s life, and therefore write them off as lazy or ‘milking the system’.
A lack of effective financial support, twinned with a lack of information to guide the affected in the workplace, can create a lack of respect for our still beautiful and resourceful bodies and imaginative minds that still desperately want and can give something valuable to the world.
Do you tell ?
Ironically I often see people desperately trying to prove themselves still able, by achieving double the output of creativity, in half the useable time of an average person; before weariness once again steals their daylight hours.
And although we educate our children in schools, in a plethora of differentiated ways, owning our healthcare needs as valued adults seems to be a different matter. In my classroom for example, a movable trolley with wheels, spaces between desks to navigate my sticks, an ergonomic chair and access to the lift would have saved my early retirement .
Without support to maintain a normal work/life balance and earn a competitive salary, those with a chronic condition are often forced to rely on disability payments or p.i.p.
This does two things. It labels people as permanently unwell, and keeps them in a state of limbo. As an ‘ill’ person , they might feel highlighted under their disability or condition before they are themselves, their old, ‘professional’ self . It can be incredibly difficult to convince the world out there ( and ourselves) that you can be both a, suffering from a degenerative condition and b, you still want to be, or are able to be the same or even better version of YOU.
The second thing that disability payments (or the equivalent) can do, is to minimise the quality of creative life you might get to live after your illness. An artist wanting to make money after being struck with a chronic and degenerative condition had better make A LOT of money at once or not at all. Because sometimes, making small amounts can cause more hassle than it is worth. This is of course, ludicrous. As a consequence thousands and thousands of amazing people who still have incredible creativity to offer the world, are stuck. Stuck earning too little to live on with the usable hours of their day or week. Having to declare any profit on a piece which might have taken months at an hour a day and then potentially losing financial support because they might be deemed able to work.
Sadly, sometimes, others are stuck being dependent on caregivers at home who might not be treating them properly, either emotionally or physically because their illness is not taken seriously, or they become stuck in a cycle of believing that because of their illness, their life force has also diminished. As parents our needs often come last on the list. But truly, unless you take decisive action to get as well as you can, your dependents won’t have the best of you, the rest of the time. Your life force is still there . It just needs a nap.
When you feel in pain, are tired and your va va voom has disappeared, it is almost impossible to tell yourself it will be OK. Prepare a box of nice things, a book, whatever food you love, new pj’s etc. Wrap a couple of presents for yourself. When the day gets really rubbish it’s there as a gift. The white knight might come charging, but in the meantime be your own.
When you live with chronic illness, you are often looked over as unsociable or underachieving because you can look well. That is until you move, or bend or try to walk.
For many people it can put an end to their chosen careers or dream path. Not only because their energy has diminished but because others see their failure and think it is best for them that they give up their crazy ideas. At best this might be justified as being for their ‘own good’. If we see pain, we often feel the need to just stop, not continue and give up for an easier life. But sometimes, your continued belief in your dream scares and intimidates people. How can you still have the audacity to do a brave thing in your condition when they haven’t? We know people react out of love or fear. That’s their fear talking. There is no room for a different, braver version of you. And the longer you’ve been ill, the wearier you will be. It wears you down. It takes an enormous amount of resilience to look past your pain, or your illness, the negativity of others and see yourself still sitting there.
Of course, there are other reasons that domestic situations might be difficult. If you need help with more specific issues click on my blog here :
Imagine a kindly hand in yours, telling you please be brave. On the journey through pain management and recreating a new life there are so many blind alleys to go up , promises and pastures new, magic fixes, gurus, and snake oil. Or you could drown in daytime tv and wine, buy new outfits you might wear if you could only bend your arms a bit more. Or like most of us, swing from one extreme to the other, like a giant pendulum until you rest on where you’re meant to be.
In the heart of it all is your key. The only key you need to navigate and know what you need. How to eat, what to wear to be comfortable, what makes you happy, what you have to offer and who you are, You.
On my journey to this page, I have battled heads of teaching departments, g.p’s, psychotic ex husbands, surgeons, solicitors, the weather and less than sympathetic relatives. But the biggest battles have been with the deterioration of a pandoras box of connected diseases- glandular fever, meningitis, arthritis, endometriosis and lupus. All of which have ebbed away at my energy, my career and my ability to live a pain free and operation free life
But. Those battles, the lack, became my drive. For my sense of self as an Artist, a single mother and a human being; I kept putting one foot in front of the other and vowed to create something every day. To that end for ten years since Escaping, I have written 100 blogs posts, ( today is my 7 year Blog Anniversary)❤ written 40 poems, drawn 200 illustrations , taught hundreds of community art groups, supported individuals and groups in the pandemic, completed hundreds of drawings, paintings, prints, cards and products. And I don’t think I’ve even started.
And I have learnt
Our bodies are telling us loudly what we need. Keep moving towards those things. Keep communicate those things to your doctor.
Know your rhythm. Completely be ok with it, even if the rest of your tribe think you are bonkers. Today is Happy day. Happy day is the first day of the year when there is enough sun to be outside for more than five minutes. I’ve waited six months. The cold is my kryptonite and grips my veins until I cry. So I did too much today. And it was worth needing to rest all afternoon. (which is often my rhythm anyway) At least there was Achievement too!
Accept your uniqueness. Having a chronic illness of any kind can feel like a ticket to a club you don’t want to be in. Let those that love you know what it means and concentrate on what you can do.
Accept help without feeling like you are helpless. There are plenty of positive ways to share skills.
Let go of activities taunting you because you can’t do them anymore. Who needs to paint on rice anyway?
Eat your greens, take a shed load of vitamin c and keep warm. Wear lots of thin layers and use heat patches.
Don’t be alone in a world that has become so isolated, but has so much potential. If you are housebound, volunteer as phone befriender for the elderly, find a local group or if you need support in your pain, locate a pain clinic. (These are groups set up to help find ways to manage and understand pain, and meet other people)
Rest. When you need to. My dog and cat now get grumpy if I don’t, as we all pile in a heap together.
Talk to someone if it hurts, if you’re sad, if it’s a bit rubbish. We all need that. And they might need it too.
And obviously, the most important thing is to make some art. Or create, or sew, or cook, or felt, or knit, or grow tomatoes or ANYTHING you can see taking shape outside yourself that expresses joy. Re-wire your brain in this meditative way as often as possible, listen to story tapes, not news, music not noise.
This drive to let the work blossom gives a perspective to my physical pain, and allows me to empathise with others in the same situation. Working together has been my joy. Without the groups and individuals there would be no Liz at the Beach Hut. We inspire each other. Being alone in pain is no use to anyone, but being silent amongst friends is a blessing. Press the link to the next page to see a selection of some of my own work, some of which was achieved on crutches (five years) , with a face full of skin cancer stitches and with a combination of early onset arthritis and lupus.
It took my health providers years to finally unpick my particular selection box of goodies, and along the way, I missed school exams, college terms, weeks of work, almost a lifetime of fatigue, joint problems and pain and digestive problems. I have had 18 operations and endured a ten year fertility battle with multiple losses. It took the longest time, but I refused to give up. It was simply because I wasn’t the norm, an easy fix, and I didn’t always look ill. When it was suggested I take early retirement because I was on crutches, when I wondered if this body would stop me moving forward, I let momentum and trust take me to the next destination. It has taken me far longer than I imagined it would, as a healthy twenty something leaving Edinburgh Art College. But I now know, that my journey to get here has been rich and rewarding, a parent, a teacher, artist, writer, and a person who exists.
Winter months are a good time to reset, remember, revisit and recollect. So often, when we feel it’s an uninspired time, we sweep aside how full the journey has been to get to where we are now. Discover again your forgotten gems, past achievements and unrequited ideas. And wherever you may be right now, keep your creative journey alive. Here are a few things done by yours truly over the years, from craft fairs, community Arts, Artwork and classroom teaching . Determination to keep making and to inspire and be inspired by others continues to be the best medicine I can find for chronic pain ! A snapshot so far
Between rest and rain the words come,
and drawn lines stroke my page.
Though chimneys howl and waves are fierce
your colours block their rage.
I thank you friends for sharing ways
to open up your hearts
your palette of our friendship
your gestures, lines and marks.
Catch your worries, leave them
unwind slowly, shut the door.
throw the clock out, see your hands move
see what’s not been seen before.
No-one’s watching, it is magic,
Doesn’t matter where you start.
Looking, laughing, making memories,
Making joy and Art.
Thankyou so far you fabulous Artists for being my inspiration! xxx