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How I became an Artist, whilst fighting with Disability and Chronic Illness

Rosalind Batty, North Mayo Art and Photography
Rosalind Batty

Hi, I’m Roz, and I’m the artist behind North Mayo Fine Art.

I’ve been creating art for most of my life, but have been an artist for 3 years. I might not have become an artist, had it not been for the fact that I became disabled, with multiple chronic illnesses, and became housebound.

I want to tell you a bit about what happened to me, and why I’m thankful that my life took the turn that it did.

I started to draw at a young age, and could always be found with a pad and pencil in my hand. My first drawings were the normal, square houses with the sun in the corner, and the V shaped birds. I remember drawing various animals including lambs, chicks and a horse that I was so proud of, and my people were the typical triangle body and fat arms and hands that rolled into one object. I was so proud of my drawings, and thought that they were the best drawings in the world.

I took art at school and enjoyed it so much that I asked the head of the art department whether I could take an extra GCSE in art, which I did (I did 2D and 3D art) I then went on to do a GNVQ in Art and Design in the Sixth Form.

I decided to get a job, and at that point my drawing took a step back, but I still dabbled in it from time to time. I always wanted to work in photorealistic art and that was always in the back of my mind.

Fast forward a few years, and I met my husband, and we decided to start a family, and thats where it all went wrong (for me).

Without going into a lot of detail (and boring you all), my pelvis broke and fused back together in the wrong place, and no one did anything about it. My consultant said it was normal pregnancy pain and I was just exaggerating it for attention. I was so angry. It happened again during the 2nd and 3rd pregnancy too, and still nothing was done.

I now have permanent damage to my back, hips and pelvis and I’m registered disabled. I’ve also developed multiple chronic illnesses including Fibromyalgia, Arthritis, IBS, Postural Hypotension, Asthma and Chronic Migraines to name just a few. I’m not telling you this for pity, but there is a reason for it.

I started many different crafts when I was at home with our first baby, including card making, stamping, crocheting, sewing, paper craft, cooking and weaving, and loved creating hand made items, but after baby number 3, my condition was so bad that I had to give everything up. I hadn’t been able to drive for a long time, my body was too sore to sit at a table to work, and I developed an allergy to every type of wool that I bought. I could no longer stand up to cook either, and I felt like my life was over. I was housebound, and on the verge of bed bound.

I was in so much pain that my bed became my best friend. I couldn’t dress myself, I needed help to have a shower/bath, and had to have the house kitted out with home aids to try and help me manage with everyday tasks. This was not how I imagined my life would be at 27.

I was in a very deep black hole and couldn’t see a way out. I thought that my life was over, and didn’t want to imagine the rest of my life lying in bed in agony. I fell into a deep depression, I hated having to be so dependent on my family, and incapable of managing the simplest of tasks on my own. Being in excruciating pain all the time was awful, and there was nothing I could do to change it. I’m allergic to all pain medications so couldn’t take anything to ease the pain, and other medication I was offered caused some awful side effects.

After many months of wallowing in my own self pity, I decided that I had to pull myself together and find something that I could do. No one else was going to fix me, no one understood what I was going through, and it wasn’t their fault, but without going through something like this, it’s impossible to understand the utter torment that comes with it, so I had to do it myself. I had to drag myself out of the deep black hole and try and get some purpose back to my life.

Thirsty Leopard
Thirsty Leopard

I got my pad and my pencils out and started to draw. It was something that I could do in bed on my worst days, and curled up in the chair if I felt up to getting up. I could pick it up and put it down whenever I needed to.

Once I realised it was something I could focus on, I started to set myself goals, and challenges, and aims for the future. I started to show my friends online what I’d drawn and got an amazing response from them. It gave me the confidence to start using coloured pencils.

I was determined to improve my techniques, and succeed in my goal to create photorealistic drawings. I worked long and hard, knowing that if I put the effort in, I would get the results I wanted. I also knew that it was going to be a long process, there were days that I could only manage 10 minutes before I had to stop and sleep, and other days I could manage a couple of hours, but I didn’t give up.

Pet Drawing Commission
Pet Commission

As my work improved my friends started to ask for portraits of their pets. I was thrilled that people liked my work enough to want it in their houses. Slowly but surely more and more people came to me wanting work, and my work was getting noticed in more and more places.

In the last 18 months I’ve had my work published in several coloured pencil magazines, I’ve had an article published about taking my own photography for reference photos, and I have 2 exhibitions booked in galleries in the next 12 months. I’ve also brought out my own range of products.

I’m attending my first Craft Fair in August, which will be the first of many fairs and markets that I will be attending.

I still have bad days, days that I can’t face anything more than dragging myself out of bed and down the stairs, just to curl up on the chair and sleep in my pyjamas, and then there are days that I feel well enough to have a shower and get dressed, which is a huge deal for me. Mornings and evenings are hard for me as they are the most painful times of the day, but I manage the best that I can, and when I feel upto drawing I take full advantage of it, and try and create something beautiful.

I feel very lucky, because lots of opportunities are coming my way and I have a very bright future to look forward too, with lots of exciting plans in the pipeline too. None of this would have happened if I hadn’t become disabled, as I would still have been working full time and wouldn’t of had the time to put into my drawing the time that was needed to have been put in to get to the stage that I’m at now.

Hungry Wolf drawing
Hungry Wolf

If I could give anyone that lives through disability or chronic illness one piece of advice, it’s never to give up on yourself or your abilities to achieve anything that you want to. You might have to take a different approach, or work in a different way, but it’s still achievable. You will go though hard times, and you might lose sight of the positives in your life, but they will still be there, and with hard work and perseverance, you can achieve anything that you set your mind to. Take the rough with the smooth, and live your life to the best of your abilities, whatever they are.

Believe in your dreams, and they will come true!

VISIT ROZ’S SHOP

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Jennifer, Monty and their story

Spina Bifida, Jennifer Quinn

Throughout the world there are thousands upon thousands of people living below the radar. Struggling just to exist, let alone be ‘functioning’ members of the community. These people, people like me, live with disability. Together we form a huge portion of the global community, but with so few of us in the public eye it’s hard to get our stories out there. So that’s what I’m hoping to do. I’d love to give you a window into our lives, a hearty welcome and a good look around!

Jennifer Quinn Spina Bifida disability
Jennifer looking snazzy in her sunnies.

Jennifer is a forty two year old lady who has suffered with Spina Bifida since birth. Basically her spine did not form properly, causing her to live with a host of health problems throughout her life. These include not only crippling pain and loss of sensation, but also mobility issues. For a long time Jennifer fought hard to get around on crutches, until eventually her body could not manage anymore. She is now permanently wheelchair bound.

Spina Bifida Carer
You don’t need a cape to be a super hero.

As Jennifer doesn’t have the upper body strength to propel herself, she relies on others to get her about. Luckily she has a wonderful husband who loves her dearly. He happily devotes himself to caring for her, cooking her meals and taking her anywhere she needs. It takes a special bond to love through severe disability, and they have it. As I’m sure you can imagine, living in constant pain and exhaustion is not easy. For Jennifer, as with many of us struggling with disabilities, depression has dogged her life. Trying its best to creep it’s way into her psyche on even the brightest of days. But she does not let it win!

Spina Bifida Jennifer Quinn Story
The lovely Monty, smiling with Mum

Jennifer has filled her life with so much love its overflowing. How? With her beautiful pooches and pussy cats, who brighten her days with their bouncy personalities and unwavering adoration. One such companion was Monty. A cheerful West Highland Terrier, he was Jennifer’s constant companion of seventeen years. After seeing her through both good times and bad, he said his goodbyes and grew his Angel wings in August of 2015. That loss was one of the toughest to go through, and coming to terms with it has been hard.

You’d think that with so much difficulty in her life Jennifer would be bitter? But you couldn’t be further from the truth. As soon as you speak to her you feel an eternal optimism exuding from her. This strong woman will not let anything bring her down for long. So much so, that rather than wallow in grief, she has turned the harrowing loss of her beloved pet into something positive. Jennifer has chosen to craft. She crafts through pain. She crafts through depression. She crafts through the melancholy of day after day of living with disability. In fact, she’s made so much that she’s even opened her own shop, Monty’s Makes.

Spina Bifida Selling handmade crafts Montys Makes
A handful of items to be found in Jennifer’s shop

Jennifer sells a whole range of beautiful bespoke crafts. Each item can take her days, if not weeks to complete. She does all her crafts sitting down, but due to pain in her back she has to do several short sessions on and one piece. To keep things interesting Jennifer likes to hop from piece to piece. When asked about her crafting she says:

It might take a while to get things done, but I never give up. I enjoy it as it helps me to take things not so seriously.

When visiting Jennifer’s shop you are immediately hit by the sheer volume of beautiful work she has created. From the kitch hand sewn items, to the funky jewellery. There’s something for everyone, not forgetting of course a good dose of doggy themed makes. How could she not. Here’s a few of my favourite pieces:

Charity Blue chipped bangle bracelet
Blue chipped bracelet

I love the jade green and aquamarine hues of this beautiful bracelet. Being a bangle its so easy to pop on, perfect for someone who struggles with fine motor skills like me! Each loop of the bangle has had two of the shimmering beads attached by hand, creating a truly decadent and stunning piece of jewellery. My jaw literally hit the floor when I saw the minuscule price tag. It’s definitely one for my Christmas list!

Felt Birds Decorations for Charity
2 Felt Bird Decorations

A sucker for anything kitch I adore these little felt birds. I can imagine them adorning the nursery of a well loved newborn. Or dancing merrily on a cot mobile to help soothe baby to sleep. Alternatively they’d be great looped through the Zips on handbags as a quirky adornment, looking cool and making the zip easier to grab at the same time. Another feature I love is that Jennifer allows her customers to customise these and many other items, offering a variety of colour choices.

Book or Tablet cushion holder – purple floral pattern
Book or tablet cushion

Finally I have to say that I ADORE this iPad holder. With the issues I have in my wrists I really struggle to hold my iPad. This is not great as I spend the majority of many days in bed, with only my iPad for company. Sometimes the pain is too bad to even hold it. My husband did buy me a small plastic stand, but due to resting it on myself, I often end up with my iPad smacking me in the face. No fun. This is absolutely perfect!! It’s sturdy and pretty and everything I could want in an iPad stand! Even better I have no doubt it could be used for mirrors and even books. I’m really feeling all the love for this item!!

Just when I really thought my admiration for the drive and determination shown by Jennifer could go no further, she surprises me once more. Because Jennifer takes no profit whatsoever from Monty’s Makes. You see in 2002, after a harrowing four year battle with lung cancer Jennifer lost her Father. Then last New Years Eve more sorrow befell her family when her sister in law sadly passed from Breast Cancer. Even with all her own hurdles Jennifer couldn’t sit back and do nothing. So that was why she decided to create her shop and donate all profits to Cancer research. And what does Jennifer have to say about her wonderful gesture?

I just wanted to help others, like I’ve been helped all my life.

If you too want to help others please take a look through Monty’s Makes and see if anything catches your eye. Otherwise feel free to make a donation at Cancer Research UK. Jennifer would really appreciate it.

**Beautifully Written by Jennie Louise Smales from This Little Life of Mine. Please note this is NOT a sponsored post. No money or goods were exchanged for the writing of this post.**

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Becoming Disabled

Becoming Chronically Ill

I remember having a dream as a small child. I was with a circle of adults around a fire and there was something that they were not telling me. I awoke feeling cross and very frustrated and the memory of the dream lingered…

As a young, able-bodied adult, I left home and did a degree in Design Representation (modelmaking). I commuted into London to work in various workshops. I took up Live Roleplaying, Yoga, Tai Chi. Work stress made me change course, learning Reiki on the way. I gained a Diploma in Montessori Directress (preschool education), commuting up to four hours a day.

Marriage, motherhood and moving house followed. Pregnancy was wonderful but my daughter and I are lucky to be here and nobody could tell me exactly why my body went so wrong.

Summer, 2012: I’d brought littl’un to a friend’s birthday party. The garden was full of fun – crafts, facepainting, treats. Whilst my daughter was having a great time as a dinosaur, I grabbed some nibbles and went to chat with the other mums. However, I felt wrong. Dizzy, clumsy, finding it hard to get my words out or find them at all, I sat in the shade quietly promising myself I’d see my GP. This just added to a growing list of niggling little things they couldn’t find a cause for.

I’ll save the whole diagnosis story for another time, though, as what I’d really like to get across is just how disability crept up on me. It was the fatigue that got to me first. I’d had it for years without realising that it wasn’t normal to feel like this. At school, at Uni, it was just put down to growing and learning. My first jobs – commuting, working long hours, surely being this tired upon waking was simply a result of that?

As a new mum, again, exhaustion had an explanation. I’d joke about having ‘mumnesia’ along with the other new mums, but my forgetfulness didn’t go away as my child grew.

I’d walk my daughter to playgroup, to pre-school, down the same village road I still travel. She started school a bit further down the road and one day I noticed that I wasn’t walking straight. I started getting odd sensations or lack of feeling. By July 2014 I was using a walking stick to help me cope with involuntary movements, neuropathic pain and balance issues. by the end of the month I’d discovered how much clearer my head was when I borrowed a supermarket wheelchair. It also reduced the myoclonic jerks. By that September I was using a mobility scooter for most of the school run trips and by the following September I’d bought my Smartcrutches, having finally been diagnosed with EDS in August 2015 (confirmed by a geneticist Dec ’15).

I had to be patient, probing, persistent and proactive to help the medical professionals around me arrive at the complex answer to that first question ‘Why am I always a bit dizzy?’ and the cascade of other questions that followed. I’ve only just (in May 2016) been diagnosed with PoTS on top of the EDS etc.

Thankfully, the dizziness is manageable, the involuntary movements have all but gone (it made beadwork nigh impossible!), I’m receiving appropriate treatment, learning to pace well, brace appropriately and eat more healthily. I have to thank the online patient communities for a huge amount of support, information, understanding and genuine caring. You yourself might have spared a moment to write to me, hidden behind one of my aliases. Thankyou, whoever you may be, for your en-courage-ment. (I needed you to notice that word within a word there).

For the first 40 years of my life I had no idea that I’d been born with a predisposition to disabilty. I only had that vague, intuitive feeling since I was young that something was different about me. I’ve learned to love who I am (“…a very interesting person” I’ve been told more than once) and I embrace my life just as it is.

Yes, I have become disabled but through my journey of self discovery, I have also become empowered.

Visit My Shop 🙂

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When your glass doesn’t seem “half full”…..smash it up! – READER STORY

Chronic Illness craft glass

23 years ago, I was an at-home mum with a fab toddler, Cameron, so I thought I’d have another baby. Half way through the pregnancy, I was admitted to hospital with some very odd symptoms. I packed knitting, crochet and cross stitch immediately.

A difficult 8 weeks later, when Roseanne was born, I was handed an A4 piece of paper, both sides were covered with a list of her problems.

Rose was then in hospital for nearly a year battling through no swallow reflex, heart failure, meningitis, a stroke etc etc .

During this time, with a hubby working away, toddler Cam and I went to bed around 7.

Fused glass Sheep Baubles for Sheep Bunting
Fused glass Sheep Baubles for Sheep Bunting

I would then wake about midnight. What to do?

So I started crafting-in-bulk! I’d always crafted, but during this time, as the sun rose, I would be found standing still in pjs, surrounded by cards, embroideries, paintings.

I trialled selling some, and reinvested any money into more envelopes and bags.

Once Rose came home, it was quite difficult to go out as she was tube fed 8 times a day, and often on oxygen and needing suction. So every nap I sewed, painted or glued.

Pet Memory Sun Charm
Pet Memory Sun Charm

Our house had a horrid damp cellar, but we tanked it and added heating and set up a nurse call system for Rose and here grew and grew my crafting haven.

As the years went on, many, many more hospital stays led to more manic crafting, both at home and often on the hospital wards too. It kept me sane (debatable). We even chose to have another baby, and Mackenzie was added to the bedlam of the Weir household.

 

About 10 years on, I was just starting to imagine going back to my work as a primary school teacher. Rose was still tube-fed, but overnight, and her medical emergencies were lessening. I was finally coping.

We were driving back from a cinema matinee. The car skidded on spilt diesel as we were going up a motorway slip road. The safety barrier flipped us and we rolled down the embankment. We landed on a path upside down, blowing out all the windows and crushing the car’s structure. The car then carried on sliding, and rolled into a canal .

Cameron dived 3 times and rescued Rose and Mac. Finally got my legs free and helped.

Unfortunately my hubby had been under the water too long and had started to drown.

He was left with brain damage.

Over the next 10 years he battled back, and can now walk and talk, and recently has actually begun driving again. It was an extremely difficult time, but again pj moonlight crafting, waiting room crafting and my now precious dungeon/cellar helped me through.

I had a kiln fitted and when life gets really hard, I go down, smash up glass, and then melt it back together.

About 3 years ago, as hubby improved, Rose also began to come on in leaps and bounds. At 17 she began to be totally orally fed, and at 19, even came out of nappies.

Beryl Weir, Crafts from the dungeon
Beryl Weir
Crafts from the dungeon

I announced out loud on a walk with the dogs, “This is going to be MY year”.

Yeah…

I found the lump 3 weeks later.

So 2 ops and waiting rooms and radiation and severe reactions to radiation.

By gum, I smashed up a lot of glass during that time!

 

I also started to take another passion, weaving, to a higher level, treating myself to bigger and better looms. Even took one into isolation for during my glowing therapy!

So now….Shhhhh….don’t tell the gods, but I’m having a ball!

Rock Pool fused glass coasters
Rock Pool fused glass coasters

My health and their health permitting, I work with glass in the morning, and fibre in the afternoon.

I spend my evenings combining the 2 into kits.

I’m teaching from home and do talks to guilds and crafty groups.

My crafts were only ever meant to cover their costs, so I reinvest any income into more luscious materials or gadgets.

Ain’t life grand!

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My Heavy Load – Living with an Invisible Illness

Not every disability is visible

Hi everyone! My names Jennie and I’m a 29 year old mum with several chronic and debilitating conditions. I’d like to share with you what life is like for those unnoticed disabled. People like me who struggle on a daily basis, but look fine on the surface. Hopefully through blogs like mine, and others, we can spread awareness and gain a little understanding.

So, I’m disabled. You wouldn’t think it to look at me, but I am. It’s a cruel joke that one of my conditions actually genetically predisposes me to look young and healthy, whilst internally I have the body of a seventy eight year old. (That’s a direct quote from a doctor.) Sometimes it’s nice to look normal. To slap on a smile and pretend to be just like everyone else. But mostly it’s hard, and exhausting. So very exhausting.

Imagine spending every day carrying a tonne of bricks on your back. They’re heavy. They grind you down. Your body creaks and aches from the weight of them. You never get to remove your load, not even to sleep, so even lying down the sharp edges jab into your already battered body. Sleep is impossible. Surely someone will help you? Nobody would let you struggle through life that way?? The problem is, your bricks are invisible. None but you can see them. So how can people help? They see you shuffling and stumbling from the weight, to them you’re just another young drunk. On busses and trains they hog seats, not knowing you’re ready to crumple. Your exhaustion, they say, can be cured with a little rest and some good sleep, a better mental attitude. As for your bricks? Well, surely they can’t exist. If people can’t see them, they can’t be there.

People soon stop attempting sympathy. Friends don’t call anymore. Whispers start about how all you seem to think about is the burden your bricks have on your life. Soon, your bricks have taken everything from you.

This is life with an invisible illness. Please, I implore you, if you know anyone with an invisible illness, help them carry their load. It means everything just to have a hand to hold on this hard journey.

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