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.
I’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.
So, 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. ♡
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.
So, I have a problem which I haven’t really spoken about. Partly because I’ve been digesting this new issue for myself. Partly because I’ve been embarrassed. But I shouldn’t be. This is a medical issue. A complication of one of my conditions, and it’s not my fault.
Last night I went for a test on this problem area. A test I was terrified of having. It was then that it struck me. I’m not the only one going through this. I’m not the only one scared about these tests. The fear of the unknown can be a terrible thing. So I’ve decided to share my most intimate of troubles and my experience last night in the hope that it eases other people’s fears.
Here goes… My name is Jennie and I have prolapses. Yup. That’s plural. I’m not going to sugar coat it. My bowel and back passage are pushing up into my vagina. My bladder is pushing down. My uterus seems to have dropped towards the front of my vagina and my back passage also prolapses out of my anus when I pass a motion. Basically my nether regions are one big old mess! Living like this isn’t fun. But explaining why is something I’ll brave another time.
Luckily I’ve been referred to an excellent doctor who is determined to fix me. Even though, due to my underlying health conditions, I’m a very complex case. The first step on the road to surgery was a test called a defacating proctogram. This can be done either with X-ray or MRI. I was to have the MRI, and let me tell you I was terrified.
My basic understanding of the test before I went was I would have something (I thought maybe barium) pumped into my back passage and then I’d have to poop it out in front of someone. My experiences of anything going up that area has always been incredibly painful. So I was nervous to say the least.
The test was in the evening at Weston Park Hospital in Sheffield. Due to the time and location I travelled alone. The hospital was easy enough to find, and parking was abundant and free. Always a good start. I arrived a little early and buzzed the bell to let them know I was there. The nurse had a quick chat with me, as they were concerned about some bleeding I’d had previously, then I had a short wait until my turn. I apologised profusely about it being my ‘time of the month’ but they assured me if it wasn’t an issue to me it wasn’t to them.
At the time of the test another lady came to collect me. By this point I must have looked like a dear in the headlights. Again she questioned me about my bleeding. She was also very reassuring about the upcoming test. In total there were three very kind and comforting women looking after me.
For the test itself you change into a gown and then empty your bladder. Any metal must be removed for the scan and it’s advisable to leave your valuables at home. Then you enter the scan room and lay on your side on the scanner.
Looking #hospitalglam in my gown.
I had two women in front of me and one behind, at the business end so to speak. The two ladies in front kept me chatting and relaxed whilst the one behind filled me up. In total she put 600ml, of what turned out to be the gel used for ultrasounds, inside my back passage. The aim is to fill you up to just around your sigmoid. Honestly, the srynges looked quite scary, but it didn’t feel too bad. The nozzles were small and they had been put in warm water to heat up the gel so it was body temperature. The sensation was definitely strange, and mildly uncomfortable. But not painful. Every now and again it would make a popping noise when air trapped in the srynges would pass into my bowel. That felt odd, but again not painful.
You then carefully roll onto your back and a cushioned plastic ring is placed under you to collect what you expel. You’re also given a headset to protect your ears. A tray thing called a coil is placed over your abdomen. This helps get better pictures.
At this point the ladies all left the room and I was popped into the scanner. My head was pretty much completely out, so I didn’t find it claustrophobic. First off they took lots of scans just with the gel inside me. Then I had to push as if I was trying to release it whilst keeping my bum clenched. This sounds a lot more tricky than it actually is. It takes a bit of thinking about, but it’s nowhere near as hard as patting your head and rubbing your tummy at the same time!
At this point the lady who filled me up returned. She told me the time had come and ran through what I needed to do again. I’d be told to release and then I just had to push the gel out. Easy right? Wrong. For me this was the most difficult part of the test. I pushed and I pushed and I pushed. I swear I pushed harder than I did in labour. My veins bulged. My muscles strained. I even saw stars! But that gel was not moving. Eventually I shifted a bit of it. But only a bit. This part of the test apparently lasts two minutes or so. But it felt like much longer.
Afterwards my lady returned to tell me what I already knew. I had failed in my task and was still full to the brim with enough jelly to cater a children’s birthday party. So after a quick clean up with the wipes provided I toddled off to the loo to evacuate the rest as best I could. Then it was back on the scanner for a final few images and that was that. Scary test over.
Honestly the fear of the test was much worse than the test itself. I have been left with some discomfort the day after. But I think that’s mainly because I really went to town trying to ‘release’. I’ve strained just about my everything. If I have any advice it would be not to push so hard that you feel like your eyes are going to burst from their sockets. Otherwise it’s really not too bad. Of all the tests I’ve had this is one of the few I wouldn’t be too upset if I had to repeat it.
I hope that if you’ve got this test coming up I’ve helped ease your fears a little, and I wish you luck with your treatment on the whole.
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