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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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My Story – Crafting through Ulcerative Colitis

I’m Jane Elizabeth Higgins. I was Jane Elizabeth Chandler until last year when I Married the gorgeous Mr Higgins, who loves and supports me through sickness and health.

I am so happy to have found this beautiful community of Crafties. I can’t actually express in words the emotions I felt when I read the welcome message from Karen and realised how perfect this community is for me.

I was diagnosed with Ulcerative Colitis in 2002. This is an Inflammatory Bowel Disease which causes diarrhoea, bloody stools, weight loss, pain, fatigue, depression, anxiety and incontinence. After a few years and lots of medications, including immunosuppressant’s I became steroid dependant and in need of surgery in 2009. More than half a dozen surgeries later, a stoma, ongoing complications, losing my job, more weight loss and countless hospital stays, I had my final operation in 2012. I now have an ileoanal pouch. Since then I have developed extreme Fatigue, Fibromyalgia, Nerve Damage and Joint Pain.

Colourful Jasper Heart Pendant
Colourful Jasper Heart Pendant

While off sick recovering from Pouchitis (inflammation of my pouch) and Anxiety in 2014, I joined a local craft workshop. It was here that I started making jewellery. I loved it straight away. I have always loved practical activities and as a primary school teacher I enjoy teaching the practical subjects such as science and design technology. The jewellery making fulfilled a need in me to create; its very therapeutic. I began making more and more things and trying different techniques. My favourite is beading. It soon became clear that I would have to give up teaching altogether. Soon after that I started my own business. It allows me to work when I’m able and rest when I need to.

I make IBD awareness jewellery to raise money for Crohn’s and Colitis UK (CCUK), a national charity which has helped me a great deal on my journey. I also make awareness bracelets in aide of Children’s Liver Disease Foundation (CLDF), GoGold for childhood cancer (money raised goes to Clic Sargent) and Sickle Cell disease (Sicklekan), as I have people who are close to me who are affected by these conditions.

Children’s Liver Disease Awareness Bracelet
Children’s Liver Disease Awareness Bracelet

I also run jewellery making parties and workshops for children and adults. These are a great opportunity for me to practice my two loves of teaching and jewellery making.

I have opened my shop with three of my awareness bracelets. They are each only £15 and £5 from each purchase goes to the health charity associated with it. I make awareness jewellery for health causes close to my heart. I have a personal story to tell about each association and I will share these with you over the coming weeks.

Until then, have a look at and enjoy the beautiful bracelets. I will chat with you again soon.

Jane <3

VISIT MY SHOP

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HOW TO: Have Energy-Conserving Great HAIR

Spoon saving hair styling when chronically ill with fatigue

HOW TO style HAIR with minimal energy and so we can save energy for the important stuff!

(I know hair loss is very common with Chronic Illness. In fact, I lost 2/3rd of my hair a few years back and had to cut it all off. Please do not be discouraged if you are experiencing this, I know I was, but it is very possible your hair will come back.)

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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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Why Mommy Can’t Dance

Mommy Can't Dance book - Help children understand Chronic Illness, Katie Carone

Here’s my story (reposted from My Website Mommy Can’t Dance)

Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”

This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.

The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.

Little did I know that this incident was the beginning of an illness turned disability that would change my life.

Postural Orthostatic Tachycardia Syndrome (POTS)

So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)

While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.

Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.

Chronic Illness Affects the Whole Family

Katie Carone, Mommy Can't Dance
Katie Carone
Mommy Can’t Dance

I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.

This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)

I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.

Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”

I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.

Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.

These are just a few of many examples.

Mommy Can’t Dance

As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.

While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.

The children’s book “Mommy Can’t Dance” is available at:

Mommy Can't Dance book - Help children understand Chronic IllnessAvailable to buy via Amazon Paperback or Kindle.

For UK orders BUY BOOK here

For USA orders BUY BOOK here

CreateSpace Store
Support Dysautonomia International

In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.

http://www.dysautonomiainternational.org/

Happy Endings?

While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.

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Would I ever be able to sing and dance again?

Amy Oestreicher artist, Gutless and Grateful

It all started with a dream.

I grew up doing musical theatre.

Let me rephrase that. I grew up thinking my life was a musical. Call it the “theatre bug”, call me a “drama queen” or a great big ham – I lived for the world of the stage. For me, singing and acting were ways I could connect with the world around me. When I took a deep, grounded breath from my gut, I sang what my heart longed to express. I found comfort in the words of my favorite composers. I read scripts like they were novels. I would play with my playbills from various shows I had seen like they were my Barbie dolls. Through theatre, I had a place in this world. I could make believe by inserting myself into characters from every era, situation and mindset, while still expressing my own individuality.

I was the kid who got sent to the principal’s office because when the teacher left the room, I would jump on her desk and start tap-dancing. I was the girl who forced every unwilling classmate to join me in a Les Miserables medley, assigning them their designated parts to pass the 30-minute school bus ride.

Amy Oestreicher starring in her one-woman musical, “Gutless and Grateful.”
Amy starring in her one-woman musical
“Gutless and Grateful.”

Even all the way up to high school, I was the theatre-girl. It was my identity, my passion, my livelihood. I sacrificed my social life and gave up many opportunities to immerse myself in what I loved.

I’ve always been warned not to put all of my eggs in one basket, but theatre ran through my veins – it was all I thought about, lived and dreamed. I’d write songs in my assignment notebook as I waited for the school bell to ring, then hop on the train to the next open call I’d read about in Backstage. When I fought with my brothers, I could only debate with them if we could do in the spirit of a musical theatre duet. They weren’t so keen on that.

So what do you do when you’ve invested everything into your passion and you can’t follow it anymore? I’ve always thought about what would a world-concert pianist would do if he injured his hand, or a dancer breaking a leg…

…but sprains heal and wounds can eventually mend. Dire circumstances felt much more long lasting; when at 18 I awoke from a coma. Although the medical staff—that suddenly became everyday faces—was more concerned about keeping my organs and me alive, I was still trying to grapple with one frightening new concern:

Would I ever be able to sing and dance on stage again?

With a ventilator and a tracheotomy, I couldn’t even talk. From months of bed-rest, the first time I was able to stand up, I was alarmed at how they trembled, as if my legs were Jell-O. I lost the energy to even think about what I loved, and being unable to eat or drink in these new medical circumstances turned my once-steady focus to mush and irritability.

I remember asking every person I could find in the hospital if they thought I would ever be able to sing and dance again. I was faced with many apologetic “I don’t knows”, sighs, shrugs, and awkward changing of the topic. However, I remember one occupational therapist gave me words that to her, felt like words of encouragement. She looked at me compassionately, and said, “You never know – the human body is amazing. I had one patient who showed no signs of hope, and a year later, when he was discharged, he only needed a wheelchair!”

(These were not exactly the words of encouragement I was looking for.)

With time, patience, and dogged determination, I was eventually discharged from the hospital. What I’m glossing over are the multitudes of surgeries, setbacks and frustrations, because what was the most important was my passion – I never forgot how I missed the stage. Even not being able to talk or stand up on my own, I still visualized me singing and dancing. Without theatre, I felt disconnected, purposeless, a has-been. I missed the vibrant girl I remembered being the first to sign up for auditions, now condemned to a realm of medical isolation.

I had always had a dream of combining song and dialogue in a show of my own design. I love the idea of storytelling through theatre, but as a teen, I didn’t really have much of a story to tell. But sometimes, a setback is an opportunity in disguise. Suddenly, I had a tale of hurdles, triumph, and heart.

Amy Oestreicher artist, Gutless and GratefulEight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that’s not always the prettiest or easiest way. It was an extremely difficult journey, yet when I started to put together a musical of my life, things felt like they had happened for a reason. Now I had a story to tell, a message to share.

My one-woman musical autobiography, Gutless & Grateful, started out as stapled pages of my journal – a few pages from the thousands of journal entries I had completed when unable to eat or drink for years. I selected 16 songs—some of which I had written – that had always resonated with my journey and me, and loosely strung them together to sing for my own therapy. I’d perform Gutless & Grateful for my parents, my dogs, but mostly for myself. Through the songs, I could allow myself a safe place to feel the charged emotions I was still trying to process from years of medical trauma.


I called it my “world in a binder”. My parents called it “Amy’s little play.” It was no surprise when I had many looks of concern and gentle warnings when I decided to book a theatre in New York for my world premiere!

I performed Gutless & Grateful for the first time in NYC in October 2012. It was a frightening, bold, vulnerable, and breathtaking experience. In it, I told everything – the pain, the medical, the joy, the infuriating – with music, drama, and humor, most importantly. I had played “roles” before, but for the first time, I was honestly revealing my own medical and emotional struggles for hundreds of strangers every night. It was a risk to lay my soul bare, but the reward was in how my own vulnerability caused others to become vulnerable and moved by my own struggles.

Since then, I’ve been performing it in theatres, hospitals, and groups in need of any kind of inspiration and encouragement. When I realized how combining powerful firsthand experience could transform lives, I developed my little-show-that-could into a mental health advocacy and sexual assault prevention program for students. Nearly losing my life at 18 years old, I’m now reaching out to students at that same pivotal point in their own lives.

Medically, my life is far from perfect, but now when a surgery goes wrong, I use it as more material for my show – if we cant learn to laugh from hardship, we can’t learn anything. And for me, when I learn, I feel alive – that just as trees grow, change and evolve with every season, I can too.
Amy Oestreicher artist, Gutless and GratefulThrough Gutless & Grateful, I’m sharing my story and helping others find the gifts and the gratitude in the hardships. And in healing other people, I heal my own self a bit more every day. I’m not there yet, but just like my show – I’m on the road.

As a performer, all I want to do is give back to the world. Being up on stage and singing is one part of the joy, but what brings the process full circle is knowing that somewhere in the audience, I am affecting someone and making them think in a different way. That is the power of theatre – stirring you to see things differently. Doing what I love, my passion once again can freely flow through my veins, and I’m a person now, not just a patient or a medical miracle. Passion may not heal 27 surgeries, but passion has healed my heart. My passion has re-anchored me in who I am. And for that, I am Gutlessly Grateful.

Amy Oestreicher

Speaker, Artist, Author, Performer, Playwright, Actress, Survivor, Writer for Huffington Post

*Celebrating Life’s Beautiful Detours*

#LoveMyDetour

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The Real Me

The real me EDS zebra Ehlers-Danlos Syndrome Blog

Sally-Ann EDS Ehler-Danlos SyndromeI’ve always loved finding about about myself. I was a shy child with hardly any dress sense (though very sensitive to irritating clothes). I matured late, have always been something of a tomboy and absolutely love stories, be it in books, in films or making them up with friends.

I had a career as a professional modelmaker and another in preschool education as a Montessori Directress. Unfortunately, despite however much I loved what I did, I could never seem to physically do it for long. There was an invisible barrier that I kept hitting time and again.

I look back and wonder how I managed to do what I did? With the companionship of a loving partner that I’ve known since our college days, a wonderful family and finding my creative outlet in Live Roleplaying for twenty years. I learned Reiki to cope with stress and became a Reiki Teacher.

A few years ago though, a cascade of symptoms began. Dizziness, fatigue, clumsiness, odd sensations…the list went on. It took three years to reach the root of all my problems – even ones from my childhood and young adult life finally got explained.

At first, I thought it was MS. It looked ever so much like it but the MRI said ‘within normal limits’ and the Neurologist said ‘Functional Neurological Disorder’. What’s that? In a nutshell, symptoms without a clearly discernable cause. Go to FNDHope to learn more.

After that, it was Chronic Fatigue Syndrome, for which I did a very good OT led therapy course and made a group of friends. We still meet up when we can. Generalised Anxiety Disorder along with historical (i.e. in childhood) Social Anxiety Disorder was diagnosed next.

Eventually, a trip to orthotics to get some new insoles that I’d been prescribed after the weight of pregnancy left my feet a funny shape, led to me being told – for the first time in my life – that I was hypermobile. Sure, Yoga and Tai Chi teachers had remarked on my flexibility and I just took it as a compliment, a positive trait. I had no idea…

The slew of symptoms kept increasing, my mobility kept decreasing, my cognitive abilities kept glitching and I had to know why. So, I chatted on forums. I researched. I looked for the right words to craft the best questions to present to my GP. I printed out information and asked his opinion. My ferreting of information and determination to know what my body was up to finally led me, at the age of 41, to get a confirmed diagnosis of EDS (Ehlers-Danlos Syndrome). That in turn led to a realisation that I just might be autistic (my doc said “Oh gosh, yes!” when I asked if I might have Asperger’s). I’m still waiting on that one.

Sally-Ann Zebras Bizarre EDSSo, in the past eight years I have survived a perilous labour (though sadly, my womb did not), become a proud mum, started two online shops, closed a Reiki Practice, gained clarity about my orientation (still happily with my college heartthrob though) and transitioned from able-bodied to disabled. I now do the school-run on two Smartcrutches with braces or my mobility scooter.

This is the real me. I love making jewellery but rarely wear it. I only dress up to do LRP or Steampunk and usually have a less mature hairdo than my now 7 year old. I love making friends but need plenty of solitude. I’m happy to offer my experience to others in the hope that they might find it helpful. Above all and quite aptly, I’m a Conscious Craftie. ♡

Visit my Zebra’s Bazaare shop

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Why My Chronic Illnesses Won’t Stop Me From Being a Writer – READER STORY

untamed-madeline-dyer-book-1

Madeline Dyer Novelist, chronic illnessEver since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.

But, when I was a teenager, I became really ill.

The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.

These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).

But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.

Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.

This is where my writing really came in.

Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!

But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.

Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.

I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.

I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.

But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.

Aged nineteen, I signed my first book deal.

untamed-madeline-dyer-book-1A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.

By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.

But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.

Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).

This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.

And I have to keep writing.

About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.

For more information, please check out her website. Follow Madeline on Twitter, InstagramPinterest and like her Facebook page to receive the latest information about Madeline’s writing.

Buy Untamed by Madeline Dyer
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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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