Ehlers Danlos Syndrome Awareness Month

In a break from the norm I’m posting an article that has nothing to do with books or writing. Don’t worry, I’m not changing the focus of my blog to my health. And I’m not in search of sympathy, either. But my health has seriously impacted my ability to write. I’ve been working hard this last year to gain control of my health and you’ll be pleased to know I’m making progress, and I very much hope this will positively impact my writing, as well as many other aspects of my life.

I’m posting this in support of Ehlers Danlos Awareness Month. Many people, including health professionals, have never heard of this condition, much less understand it and how it affects sufferers. For treatment and the understanding of this group of conditions to improve it’s essential that we discuss it more openly. This is my contibution, and thanks in advance for taking the time to read it.

My EDS Story

May is Ehlers Danlos Syndrome Awareness month. My friend Cassandra Campbell, who is also a fellow EDS-er, encouraged me to share my story to help highlight this condition and the impact it has on sufferers lives. I don’t have any qualms talking about my illness but I do struggle when it comes to expressing how it truly affects me in my day to day life and how it makes me feel about myself. I often downplay it or laugh it off, mainly because I feel embarrassed or misunderstood (“But you don’t look/sound disabled!”), or guilty because I’ve missed yet another friends birthday/dinner/night out, or my son has had to help me up off the floor again, or stay home to help with chores instead of going out with his friends.

So here goes. Here’s my story. Today I’m not going to downplay it, but I can’t promise not to laugh it off. Sometimes it’s the only way.

Throughout my teens I was always injuring myself. Sprained ankles, torn ligaments, broken bones, aches in my legs and arms. But I was very sporty and put it down to that. I thought everyone was the same at that age. A combination of growing pains and clumsiness. I was always active, always out. I went back to work after my son started school and enjoyed a full and busy life. I suffered from IBS but was dealing with it reasonably well for a time. But soon I was in constant pain and discomfort. Sitting and walking became very uncomfortable. I had pain from my back and abdomen down my leg. Then in 2009 I was diagnosed with Endometriosis. I had major surgery that year to remove cysts. But I still felt unwell. The following year I lost my mum and my job. The cysts came back. I had keyhole surgery, but I just wasn’t recovering. My whole body hurt, I was constantly fatigued. The cysts came back again so finally, at 35, I decided to have a hysterectomy in 2011. And still I couldn’t recover. My body felt like lead. I was lost, swallowed up by this black hole of pain, fatigue, fear and confusion about what was wrong with me. My GP was no help. He told me I was depressed and accused me of being addicted to painkillers. I probably was depressed but that was not the root of my problems, it was a result of them.

It wasn’t until 2012 that I was finally diagnosed with EDS, by a Benefits doctor of all people. I was then able to get referred to Prof. Rodney Grahame’s hypermobility clinic at UCLH (Prof Grahame has now retired but the clinic is still there). I spent much of the next few years being farmed out to numerous doctors all over London; gastroenterology, uro-neurology, neurology, podiatry, physiotherapy, occupational therapy, dietitian. I had bladder tests, nerve conduction tests and the dreaded Tilt-Table Test. It all confirmed that I had EDS, POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of dysautonomia, and secondary Fibromyalgia. And I learned that my IBS was connected to the EDS.

I suffer nerve compression in my elbows and sciatic area. I’m starting to get nerve pain in my fingers and toes. I have bladder urgency and frequency. I get up 4-6 times at night to go to the loo. My joints feel loose and are constantly slipping, or subluxating (partially dislocating) with occasional dislocations. I subluxated my shoulder 18 months ago walking my Yorkie Russell when she was a pup. I ended up tearing part of my rotator cuff which still hasn’t healed properly. My fingers, wrists and elbows pop out almost daily, sometimes just from combing my hair or brushing my teeth.

I find the POTS very hard to deal with, maybe more so than the pain from the EDS. In fact, this was one of the main reasons I got rid of my car. My body doesn’t cope well in the vertical position. My temperature doesn’t regulate well. I have poor balance, constantly stumble. I get very dizzy, experience visual and auditory distortions. Sometimes I black out. My heartbeat palpitates and races (90-120 bpm), blood pressure crashes (90/45) or spikes (170/135). My hands and face go numb and spasm. I have blacked out in public places several times so I now wear medical badges around my neck when I go out. Or sometimes I feel Potsy and have to lie on the floor before I collapse. Mostly, I just tend to not go out very often, especially alone. It’s scary and embarrassing for me and for the people around me.

If I want to go out I have to make sure I have 2-3 free days before and after so I have time to rest and recover. I can’t really do multiple things in a week as one outing can wipe me out for days, sometimes weeks. If I do go out I have to plan strategically who’s coming with me, how I’m getting there, how far I may have to walk, how long I have to be upright for, where are the toilets, will I have to negotiate stairs. And as I have stairs at home, I frequently sleep on my sofa instead of going up to bed. But the toilet is upstairs so I have to use a commode in my living room. I struggle getting in and out of the bath for a shower so I mostly wash in a bowl downstairs. All these little indignities add up so it’s really important to have a thick skin and a sense of humour.

I don’t sleep well, usually 2-4 hours of broken sleep at night if I’m lucky. Sometimes I sleep all day. I have to be vary aware of my pacing or I have massive crashes or flare ups that can last for weeks. When I’m having a flare up I tend to hide away from everyone because I worry they’ll get fed up with me bailing on them or not having the energy to talk. Sometimes I go too far the other way and try to emotionally support everyone all the time because I feel it is the only thing left that I can do for the people I love, and then I have nothing left for me.

I’m constantly struggling to find where my line is. I’m learning. It’s important to push, but only up to the line, not over it. After spending 3 weeks in Stanmore Hospital’s Pain Rehab I think that maybe, sometimes, I’m even winning. I learnt so much, and met some amazing people there that have become very important to me, a little network of people who I don’t have to explain to, or make excuses to or feel guilty around. It helps so much. I met others who have it much worse than I do and yet still laugh, still smile, still live their lives to the fullest of their abilities. I’m now exercising (very carefully) and getting stronger. I’m pacing better. I’m planning nice things to do with my friends and family. And, God knows, I’m blessed to have friends and family that support me, even if they don’t completely get it. To those of you who have been by my side every step of the way, I give you my thanks. I wouldn’t have remained intact without you. You have my deepest love and appreciation. My son, Akira, is my biggest source of support and he never complains. He works, goes to college and helps me out at home. He comes with me to my hospital appointments. We plan fun days out at least every couple of months so we have nice things to look forward to. We make memories. And we laugh. A lot. I hope he knows how much I love him and value him, and how proud of him I am.

That’s really why I decided to share my story. Perhaps I’ve been too scared of being pitied or embarrassed by my limitations to really explain to the people I care about exactly how this condition affects me. Perhaps I’ve stepped away from people out of fear they’ll step away from me. That’s something I’m working on. Let me say right now, I neither want nor need your pity. Or sympathy. Just understanding and compassion, your friendship. Some of you I don’t see much of anymore, and that’s largely on me. I miss you. Please don’t be afraid to come over or invite me places, and please understand if I have to say no that it’s not because I don’t care. And though I may not be able to do all of the things I used to do there are other things I can do. Maybe you could come have a cuppa with me and laugh when I fall over and then help me up off the floor. Maybe you could come with me when I take the dog out on my scooter instead of meeting for a drink, or do a workout session instead of going dancing.

And maybe sometimes we EDS-ers just need time and patience and an arm around the shoulder while we grieve for the person we were, and accept, adjust and embrace the new version of who we are now. Don’t give up on us. We’re still us, just a bit different. And who says different is less?

Sometimes Life Just Get’s In The Way!

Hi Guys! Here’s hoping you’ve all had a good summer. I really don’t know where the time has gone. All my good intentions to write every day seem to have been way-laid and side-tracked by the vagaries of real life. My son passed his GCSE’s and has now started an Electrical Engineering course at college (how in the heck did I get to be old enough to have a son in college!), we went on holiday, my internet decided to misbehave (still not completely fixed), my cat got sick, and I had a new experience (tilt-table test. UGH!!!). So all in all, a fun time was had by all 😉

Rest assured, I’ve still been working on the book, though I’ve not written as much as I would have liked over the summer. I’m getting all my ducks in a row so that when I start writing regularly again I can focus without being distracted. Can’t wait! 

I hope all of your projects are coming along nicely, I’ve done my best to keep up with your blogs as much as my erratic internet has allowed, and I’m looking forward to catching up with you all and what you’ve been up to over the summer.

However, I did write a short poem that I’d like to share with you in the meantime. Please don’t judge me too harshly, I’m not much of a poetry writer, at least, not since I was a teenager. But it made me chuckle even as I was writing it, and I hope it does you too. 

Here goes!

 

Body Clock

 

My ever expanding waistline

Is a marking of the passing of time.

A result of all the pick, pick, pick.

The clock is moving, tick, tick, tick.

 

When I was a youngling my clock read nought,

But time kept passing as I nibbled and I bought.

But I liked the nibble and I liked the buy.

Still the clock kept ticking; how the clock would fly.

 

Now the clock is barely ticking,

And the clock wants not to fly.

So I think I’ll change the batteries

While I nibble my last pie.

 

That’s all for now, folks. I have a couple more weeks of familial mayhem and madness, otherwise known as life, to deal with and then I hope to back with you all again on a much more regular basis.

Happy writing!

 

 

 

 

 

 

 

Coincidence or Serendipity?

Hi guys! Sorry for my recent absence. I’ve had a bit of a bumpy time with my EDS, including several day trips courtesy of the NHS, culminating most recently in a partially dislocated wrist, so writing has been pretty much impossible for me of late. I’ve missed you all but I’m well on the mend,  very ready for my holiday to Tenerife, and then back to my writing.

While indisposed, I spent some time learning new stuff. Something I’ve been meaning to do for the longest time is to familiarise myself more with the classics. At the top of  my list was the Iliad by Homer. I’ve always had a secret soft spot for Greek mythology. No, I haven’t read it all, but I finally made a start. And I made an interesting (to me) discovery that I will try to share with you.

As I was reading the beginnings of the Iliad I was also googling information on the main players in an attempt to get it straight in my mind. Well, you all know how the research thing goes, one thing led to another, and before I knew it I was totally absorbed in the story of Cupid and Psyche. It makes up part of the Metamorphoses/The Golden Ass by Apuleius. Lucius, the protagonist, gets turned into a donkey by magic gone wrong and in order to get turned back into a human he has to undergo various trials and adventures. It is a story of curiosity and magic.

What’s interesting to me, other than the story of Cupid and Psyche itself, is the fact that Psyche’s story mirrors the main story of Lucius. More curiosity and magic, trials and adventures.  I won’t attempt to recount the story because I won’t do it justice, but it’s well worth reading.

Now to the bit that fascinates me and gives me goose bumps.

In reading about Cupid and Psyche I stumbled across the term mise en abyme. It means, and I quote:  

“Mise-en-abîme occurs within a text when there is a reduplication of images or concepts referring to the textual whole.”   — Wikipedia

In simple terms, in a literary context it means a story within a story, which very much describes how the story of Cupid and Psyche fits into the Metamorphoses as a whole. Well, guess what? Unbeknownst to me until I stumbled across this story, the book I’m writing now is a mise en abyme! And just to add the cherry on top, Psyche was the Greek goddess of the soul, and my book is heavily focused on the soul!

So I ask again: coincidence or serendipity?

Happy writing, peeps.

Posting Negative Book Reviews

Why do I always feel so guilty when I write a negative book review? Do all of us writers feel that inner conflict when faced with reviewing a book in a less than favourable light?

Perhaps. Perhaps it’s because we understand the labour of love that is creating and writing a story. Our characters become our friends, family. We feel protective over them. I know I certainly do. But here’s the thing: once we tell a story, put it out there, it’s not just ours any more. It belongs, in a sense, to everyone that’s invested the time to read it. I mean, that’s why we write, after all; to inform, to excite, to move, to provoke. 

So I ask myself: why be afraid of expressing a negative emotion or feeling? They can be as emotive and passionate as their positive counterparts; they’re valid, as long as they are delivered in a respectful fashion.

I have always maintained that I will not be disparaging towards other writers. It’s not necessary. But I’ve given myself a talking too today and told myself to be brave with my true feelings when it comes to writing and posting book reviews, otherwise my glowing reviews of the books I love somehow lose their merit, become less credible. 

So here’s what I’m going to do: I’m going to write reviews about the books that provoke me, excite me, affect me in such a way that I feel compelled to express it out loud. Really, that’s a good thing. It means that, negative or positive, the book I’m reviewing has succeeded. It’s made me feel something that I want to share.

 

Writing Corner — Research

 

When I wrote my first book I honestly knew very little about writing. I spent as much time researching how to write as I spent actually writing. I once spent three days reading everything I could find on the correct use of the apostrophe. And don’t get me started on commas! Who knew there were so many different types of commas. “Eats, Shoots & Leaves” by Lynne Truss became a favourite read of mine at that time. Educational and hilarious.

Time that I had ear-marked for writing got swallowed up with my incessant quest for information, whether it be about technique or subject matter, and I’d disappear down the rabbit hole of research, sometimes for days.

My first book was a blend of paranormal romance and history with a strong Celtic — and more specifically, druid — link to it, so much of my time was spent researching how the Celts lived and the role of the druids. It wasn’t fact-heavy but I felt that in order for me to write those parts of the story authentically I really needed to have a complete overview of that time. However, research can become a black hole that just keeps pulling us in, seducing us with answers that fascinate and distract us from actually writing the story that we want to tell.

I still believe that it is essential for the writer to intimately know the world that their story is taking place in, even things that the characters and the readers don’t need to know. Only this time around I did my research first. I have been living in my make believe world for about a year already, though I only actually started writing the story a month or two ago. That’s not to say that I don’t need to research any more. I’m constantly finding things to investigate or double check, but much of the world-building research I did before I started writing. I mapped out the main plots of the story, the science behind it and how it all connected together as a whole.

As I’m now writing a YA Sci-fi story, there is an awful lot more that I needed to research for this one. I can’t argue with the laws of physics and, though I know that I can apply a certain amount of creative licence, I personally like to have my stories grounded on a foundation of fact. In some ways, that makes my job harder because I can’t simply make things up to fit my story; there has to be a certain amount of logic in my make-believe. So setting the parameters for my story world right at the outset has really helped focus my writing. It means the continuity will be there from beginning to end as I’m following the same rules throughout. And it means I can spend more time writing the story uninterrupted because I know where I’m going. Constantly stopping to research often throws me off my rhythm, or I lose the feel, the voice, of whichever character I may be writing about.

I have learnt that research is an intrinsic part of the process of writing. It’s one of my favourite parts of the process. Perhaps this insatiable need to know is characteristic of us writer types. But this time around I’m keeping my research firmly in its place.

Starting A blog: Lesson 1

So, here’s the first thing I’ve learnt since starting my blog all of 10 days ago:

Make sure you know what your blog theme offers you!

I, incorrectly, assumed that one WordPress theme was much like another, they just looked different. How wrong was I! They all offer slightly different functions and, depending on what you want from your blog, create a different environment. I initially chose a theme I liked on face value, but in retrospect, it didn’t quite provide the function or feel that I wanted for my blog. Talk about jumping in the deep end.  So I’ve changed it, sooner rather than later, so as to cause the minimal amount of disruption to those of you who have very generously decided to follow me. I hope you like it.

The second thing I’ve learnt since starting my blog about my book writing is this:

I haven’t had time to write my book!

One of the reasons I started this blog was to help me maintain my writing progress. How can I blog about my book and my writing if I’m not actually writing it? The more interaction I have with the writing community the more I want to write. I was fully aware that it would take some time to get the blog up and running. But I haven’t written one sentence of my book since the blog was launched! Time management is going to be key if I want to maintain my writing pace for the book and create a successful and interesting blog. I need to set targets for each and stick to them.

The third thing I’ve learnt in my 10 days as a blogger is:

How amazing is the writing community!

Ultimately, we’re all in competition with each other. We all want to write in some way or fashion, and we all want to succeed. But the writing community is a rare gem in that we don’t compete with each other. It’s a community I’m proud to be a part of.  We support and encourage one another in a way that I’ve never come across before. It’s like we’re in it together, one writers’ success is a success for us all. As long as there are people that want to read there are those of us that will always want to write, not for money or fame, but for the love of the written word. Wielded well, the pen is as mighty as the sword, as sharp as a knife and as gentle as a kiss. That’s what I’m chasing, what I’m hoping to achieve, and I’m glad to have you all with me in my endeavours.

Happy writing, peeps!

 

The Accidental Writer

pencil-17808_150After months of constant research, heavy-duty thinking, and a fair amount of procrastination (I’ve got too much housework, the cat’s sick, my son has his exams, I don’t feel well, etc) I finally started writing my second book.
In case you’re wondering, the first one’s not published. Honesty dictates I confess that writing was never something I aspired to do. Reading has always been my thing. Until I started having health problems I’d been a Library Assistant for seven years. It wasn’t until my mother passed away very suddenly in between two of my surgeries that I started writing. I had a dream (I know, I know, so cheesy) that so captured me I had to write it down. The next day I decided to write it out as a complete scene. Before I knew it I had pieces of paper and printouts littering my living room, I was buying pencils in bulk and every waking (and sometimes sleeping) moment was taken over with my ideas or the voices of my characters whispering to me. I’d started writing a book, almost by accident. I became the Accidental Writer.

While I was writing the first one I genuinely thought it was genius, the next best thing in young adult fiction. I was totally caught up in it, immersed in it, living in it. I finished that book eighteen months ago and aside from entering it in a writing competition in which it didn’t place, I’ve done nothing with it. I kept telling myself it was because I wasn’t confident enough, experienced enough, it wasn’t ready, it needed better editing. Now, with a little distance between me and my creation, I can honestly say, “The book isn’t right.”

Does that then mean, by default, that it’s wrong?

Absolutely not! That book, and the many processes, mistakes and emotions I went through to write it, was my school. Before I started writing that book I had no idea how to write. Much of my time was spent bumping blindly into one wall of ignorance after the next. But with each bump I built up a mental blueprint of the parameters that facilitate my writing.

This time around I’ve started out with intent. I have a clear idea of where the story is going and the path I want to take to get there. My characters have been marinating and expanding from two- to three-dimensional people for almost two years. They’ve been alive and confined in my mind for so long that they’ve started banging to be let out. Now I have no choice but to start writing. And I love that feeling, the feeling of the story inside, confined, desperate to burst out and become something real.

So now my pencils are sharp, my paper is waiting and my cast of characters are forming a disorderly queue to take to the stage. The question now is can I do them, and my story, justice? Can I write the story well enough? I guess there’s only one way to find out.

I hope you’ll follow my (and my characters) journey.