I have never written a blog before and I am not all that good at writing about who I am or how I feel. Just lately I have felt that I should give it a go and reach out to people. Caring can be a lonely job. I get sick of people telling me it’s not a REAL job and that I should go to work and stop claiming tax payers money.
I care for my husband who was first diagnosed with Epilepsy 10 years ago. This is how it all started. He had to give up work because his fits got a lot worse. He was a hazard in the work place. It was worsened by the fact that he had an accident and broke his neck. He’s lucky to be alive. I love him so much that I am thankful he is still in the land of the living. His neck is crumbled and the gravel as we call it pushes on nerve endings which caused his fits to get worse.
While going through the system and trying to work out what was the cause, he was diagnosed with Schizophrenia. I have always taken his mood swings as a quirk and neither of us knew he had a mental disability. It opened our eyes to how much can be hidden under the surface.
Giving up work for him caused a great depression. He’s never been the same. With the system treating us the way it has it has caused anxiety and panic attacks so now talking to strangers and going to new places is a challenge for us.
Life can never be the same. So YES, I am just a carer but I don’t get time off. I don’t get holiday pay. I don’t get any support from anywhere and I am left to rely on my own decision making to what is best for us. I don’t have time to be sick. I am needed every minute of the day. I wish I could go to work and work nine to five. I would surly make more money and possibly have a more comfortable life.
I didn’t choose for this to happen. I’m not just sat here on my backside doing nothing all day like people seem to think I am. It’s hard work. Maybe not physically every day but mentally every second. Every time he has a seizure he could die. If you love someone just take a moment to think how that feels. He has at least two a day on a bad month. There is nothing I can do but sit by his side and pray he pulls through.
So no, I don’t have a title, a posh house or children. I gave up all my dreams to be by his side everyday. Love is the foundation of my life. My gift is the days I get to see him smile without pain.
I craft to keep my sanity. I love to create. I love to see people smile and I think LOVE is the most cherished gift we can share with one another. It’s FREE and it changes lives.
So next time someone says they are a carer, take a moment to realise they give up their lives for others happiness. Give them some supportive encouragement. I know we all sure could use it.
Thank you for taking the time to read this. Much love to you all. xx
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
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:
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.
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.
Ever 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.
A 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, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.
I often read blogs about ‘What not to say to the chronically ill.’ On the whole I do think these are helpful for people who want to remain a good friend to those of us who have been blighted with these kinds of issues. (Huge credit to you for trying!! We know we aren’t the easiest bunch to be around at times, or at least I know that.) However I do find these blogs to be a little blanketing. Not all of us are the same. For example, many advise not to tell your chronically ill friend they’re looking good, because it implies you think there’s nothing wrong with them that day etc. Well, sorry to break the mould here folks, but I couldn’t disagree more. You see, most of the time I look far, FAR from good. In fact I look positively haggard. So, if by some miracle I’m actually looking good (particularly if I’ve made a special effort to) it’s lovely if people notice! Funnily enough I don’t want to look as sick as I feel.
So, here’s my list of things guaranteed to get MY back up, and why. Feel free to add your own in the comments section.
But you’re used to it.
This is usually in reference to the pain I live in, or some other aspect of my ill health. People often say this when they are ill, because clearly having these symptoms temporarily makes them oh so much worse than living with them day in, day out, for years on end.
Can I just clarify something here. You NEVER get used to crippling illness. Resigned to it. Yes. But not used to it. Learning to live with something is very different than becoming used to it. For example, if it became law that all men were to be kicked in the balls on the hour every hour, would their lives remain the same? Would they be happy? Soon this would become the new norm. After initial fighting, and resistance, the men would be resigned to their fate. But, would that make it hurt any less? No. Would it make the daily torture ok? Hell no.
What are you using that for?!
Often accompanied by ‘It makes you look like an old lady.’ Or also ‘You didn’t need it yesterday.’ As you may have guessed, this is referring to one of my mobility aids. Whichever one I happen to be utilising at the time.
Just know that using any of my aids is a huge disappointment to me. I hate to do it. But I will. If it means I can get out on a day Id usually be stuck home, or go on a day trip with my family, I’ll use it. But I’ll also struggle as long as I can without it. There is nothing shameful about using mobility aids, but it’s a personal issue I have, one that I’m trying to get over. I don’t want to feel embarrassed to use something I need. Your ‘joking around’ doesn’t help. Please stop.
It must be nice getting to stay home all day.
I’ve even been called lucky. Lucky. (Just let that sink in.)
I did not choose this life. Staying home all day everyday is not my idea of fun. Being stuck in bed is not my idea of life. I went to university. I used to have a career. I was going to earn good money and have a nice house. I was going to travel the world. There is not a day goes by I do not wish I could be working and less of a burden on my family. Oh, and there’s the crippling pain, exhaustion and plethora of other symptoms. They’re not fun either.
I wish I could be a stay at home mum.
This fits in seamlessly with the above comment.
You know what? So do I! I wish I could be a stay at home mum. At least the mum I always wanted to be. But I’m not. I’m an ill person. I’m a woman who listens to my daughter play whilst I lay in bed. I’m a woman who lets her husband run the home, and needs him to look after her. I’m a woman who’s absolute best will never be anywhere near what she feels she should be doing. Please don’t think I’m getting to be a Betty Crocker mum. I’m not. But I am giving my kids the best of me I possibly can.
You want rubbing out and starting again!
Someone also once kindly told me I needed putting down.
I know these comments are meant in jest. But, when someone is feeling worthless, this type of thing doesn’t help. It’s just another stick for me to beat myself with.
I feel so sorry for you.
There’s many other ways of saying this. But they all boil down to the same thing. Pity.
I don’t want your pity. Sometimes I have my own little pity parties, but they have a guest list of one. My life is what I’ve been handed. I’ll live it as best I can. Knowing I have your pity is not going to help me enjoy it. I’d rather have your friendship. Thanks.
So, that’s a few of my pet peeves. I know there’s many many more. This is a post that may end up having several volumes to it!! But I’d like it to be about more than just me ranting. What is like is for people to read this and for it to make them think. Are you being insensitive without realising it? Could there be better ways of talking to your chronically ill friend? Or even to people around you in general. People all have battles, and past hurts, we aren’t aware of. If I could give one piece of advice, it’s this, if you’re not sure if you’ve caused hurt, just ask. Knowing someone cares always helps.
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