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.
Every obstacle an opportunity.
And always with my trusted companion !
You can do anything.
Just do it your way