20 Aug 2015

Why good enough may ultimately, never be good enough.

My children are now both sixth-formers and thinking about (hopefully) where life might take them. As they are autistic, that path is unlikely to be traditional or smooth.
Thinking back to myself at a similar age, I was struggling to see the value in anything. I didn't even know who I was or what I might be capable of achieving

It's exam results season, AS last week for us and today, GCSE. Youngest has literally not slept all night. I have been searching for inspiration for them and this morning I have found some on Quora, the question and expert answer site.

I love Quora, I've said this before.

This particular answer to the question, "Why did Google create Alphabet" (Google's new holding company for innovative product creation) is so in line with my own beliefs of what I hope every young person, including my own sons, should realise before it's too late, that I wanted to share it.

It has thousands of Quora Upvotes, and so it should. It's long, but it's worth reading if you want to be inspired and truly understand why being "good enough" is never truly "good enough".

As a special needs mum, and someone living with chronic illness, I have often had to accept that 'good enough' really is the best I can do at that moment, which in fact, makes it also the best I could have hoped for. No point in feeling guilty about it. 

Even so, we should always strive to do our best- whatever that is - to help others and to wake up, "uncomfortably excited" about our plans. Go beyond your comfort zone; no one ever did anything memorable doing the same old thing they did yesterday, or the day before.

You don't have to be great, or become a billionaire (though that would be nice!). You DO have to think laterally, seek better solutions to every problem, innovate and think creatively. Never settle for easy. Wake up hungry for better, go to sleep knowing you did something towards that.

Some days, if you're like me, that might just be getting out of bed. I might not have been able to yesterday. I am, if nothing else, an optimist. 

But while you're striving, remember: Don't Be Evil. Don't exploit or take advantage of those weaker than you. Live your life for the service of others because ultimately, helping humanity into a better future is the best we can hope for.
Page quote


Here's the answer from Quora: 
Read James Altucher's answer to Why did Google create Alphabet? on Quora
Read More »

27 May 2015

EDS Awareness: My experience with Ehlers Danlos syndrome and Pregnancy


It’s EDS Awareness Month in May and I’ve decided to write about something that may be on the minds of many young women with Ehlers Danlos- how will having EDS affect me when I want to have a baby?

Ehlers Danlos syndrome is a multi-faceted condition that, much like autism, has a number of different types and within those types, each patient is affected in a different way. The most serious is Type 4, or Vascular EDS. If you are female and diagnosed with this type, you will no doubt already understand that pregnancy is very risky and potentially life-threatening as it can increase the possibility of a catastrophic arterial or organ rupture.

Vascular EDS and pregnancy: statistics


A study published in 2014 found that pregnancy-related deaths in women with Vascular EDS occurred in 30 of 565 deliveries (5.3%). Interviews with 39 women indicated that 46% had uncomplicated pregnancies, while the most common pregnancy-related complications were third-/fourth-degree lacerations (20%) and preterm delivery (19%).

Life-threatening complications occurred in 14.5% of deliveries and included arterial dissection/rupture (9.2%), uterine rupture (2.6%), and surgical complications (2.6%). This is just one study however, anyone with this diagnosis should always seek their own personalised medical advice before attempting to become pregnant.
I've also added some free to access resources at the end of this post regarding pregnancy with Ehlers Danlos syndrome.


Just before youngest was born

My Experience


While I am not a medical professional, I can talk about my own experience, as someone with EDS Type III, who has been through two pregnancies. Please feel free to leave your own experiences in the comments as well as they will be helpful to other couples.

At the time of my pregnancies, I did not have a diagnosis of EDS, nor was I seriously affected. In fact, my two children were born 15 years before I fell life-changingly ill with chronic pain.

I had always experienced symptoms at one time or another but as they were transient, by the time I'd decided to visit the doctor they had either disappeared or the doctor wasn't particularly interested. These include unexplained pains that would disappear as quickly as they came, joint pains, neck and back pain, dizzy spells, weird stabbing pains in different parts of my body, cold extremities, weak ankles, low energy, poor sleep and so on.  They just didn't happen, as they do now, all at once and so no one ever put them together into one whole, and even if they had, they probably wouldn't have heard of Ehlers-Danlos syndrome anyway.

If I had realised, I would perhaps have been able to get specialist advice but at the time, EDS was even less known than it is today. Plus, I was working as a television journalist with a new contract with a top agent and I was more concerned with how I was going to manage work and being a mother after the baby arrived.

Hypermobility means that the joints can be loose or unstable and the collagen, which makes up most of the body, is more stretchy than normal. Pregnancy hormones themselves will also increase the elasticity of every expectant mother's body so for someone with EDS, this can mean joints, muscles and ligaments are much more likely to be over-stretched and injured.

Eldest comes home


Early to mid-pregnancy with EDS


Within weeks of being pregnant for the first time, I was suffering with back pain severe enough to send me to A&E. It wasn't regular back pain, but shooting pains and aching in the lower half of my back. As I had previously suffered with back pain, no one was too bothered and the baby was growing well. Very well. I suffered morning/all day nausea and sickness for a while, enough to miss a few days off work, but not too bad.

But the fatigue! It seemed, at times, that the baby was sucking every single ounce of energy out of me. I was working near Tottenham Court Road in London and would stand at the bottom of the steep flight of steps at one of the exits and just look up, wondering how the hell I was going to get up to the top.

In the end, I had to stop work at 6 months pregnant. A 12-10pm shift reading pan-European TV news bulletins may seem like a cushy number, but not when you're hefting around an unceasingly active growing human inside you.
As soon as I knew I was pregnant, I began to use lots of moisturising lotion on my abdomen to stave off the dreaded prospect of stretch-marks. Little did I know at the time, but having stretchy skin comes in rather handy when you're pregnant. I had always thought that making sure I remained oilier than a tanker spill was the reason I didn't end up with a single stretch mark after two babies. However, when EDS finally engulfed me in my forties and I consulted the eminent Prof. Rodney Grahame, he asked if I had developed stretch marks in pregnancy. When I said no, he laughed excitedly, “Ha ha! He said, why do you think that was? Because of EDS!” A small comfort, I suppose, but a comfort nonetheless. However I have heard of some women whose body became criss-crossed with stretchmarks, so as with many “spectrum” type conditions – when you've met one person with EDS- you've met one person with EDS. In other words, you can't generalise. Those women may in fact have a type other than hEDS. 

 Of more concern to me at the time, was that we had a "double" blood test and we were called in because the test indicated an elevated risk of Down's syndrome. Did we want an amniocentesis? My partner and I discussed it and decided that on comparing the risk of miscarriage with the chance of DS, we would not go ahead with the test. If our child had Down's, so be it, he would still be ours.



Youngest with his splint for unstable hips worn for 10 weeks

Late pregnancy with EDS

Not long after I stopped working at six months pregnant, moving about at all became very difficult. The baby was growing rapidly and his weight was pushing down on my pelvis. I became unable to walk far without a lot of pain. Getting in or out of the car required my husband helping me in or dashing around to the passenger side to haul me out, laughing, "I'm a comin' Lambsy.." as he scooted round the car.

The problem was Pubis Symphysis Dysfunction, which is when the pelvis over-softens from progesterone and causes pain and instability from the weight of the baby. It usually resolves after the birth but it was one more easily missed sign.



Sheepdog, with his Lambsy


Meanwhile two months before the birth was our wedding day! You might think we'd left it a bit late, but this baby wasn't expected - we had only been together for a short time - but I really wanted to be married before he arrived. The day was long but wonderful and of course, we couldn't go on a big honeymoon. We promised ourselves one at a later date. 18 years on, we still haven't been because raising two sons with autism is pretty all-consuming, especially when you get tired easily (even though I didn't know why at the time)


Here he comes. I said here he comes! Come on!


By my due date on 22nd November, I was desperate for this baby to come out. He, however, was quite happy in my comfy, stretchy body, turning from side to side and sticking a foot out now and again so hard that you could see the outline of his toes. It felt like having an alien inside me.
The date came and went. And then some more days, and some more. I began to feel embarrassed at this failure to appear. I made my husband do three rings on the phone, hang up and then call again so I knew it was him before I would answer it.

I was admitted for an induction on 1st of December. The baby had missed my Dad's birthday, today was my late Grandad's birthday and the 2nd would be my sister, Fiona's birthday. Would it be today? I hoped not actually, as I had shared my birthday, 6th June, with my uncle and it had felt like I had never had a special day all to myself when I was growing up.

The induction medication is given as a pessary, but for me, nothing happened. My husband visited and went home, still nothing but some regular early pains that weren't going anywhere. They gave me an injection of pethidine - it did nothing to make me more comfortable but gave me a huge, painful bruise from the injection - again neither of which is unusual in someone with EDS - if I'd known I had it. I spent the night kept half-awake by the wailing of women whose babies knew that womb time was up and were preparing to emerge into the big bad world. Unlike mine.

Late morning the next day, I was already exhausted from a poor night's sleep. Just as they were preparing to administer a second pessary, my waters broke.

Labour came on so hard I thought I was going to die – no, I was sure of it. My whole body was engulfed in agony and I was moved to a side room as soon as my husband arrived. An epidural was arranged while I enjoyed some gas and air. It didn't help the pain, possibly again, related to the EDS resistance to anaesthetic - but I just didn't care as much as they wheeled me down to the delivery suites giggling and hurting at the same time.

Unfortunately, even though it was a walking epidural, it seemed to slow the labour down and more than 24 hours after full labour had started, the baby was still nowhere near ready to emerge.


In order for a baby to be delivered, the cervix has to dilate (open) and efface (thin) and whether this was as a result of EDS or not, I don’t know, but in me, this process had only occurred fully on one side, not leaving enough room for the baby to exit.

I was exhausted and so was my husband, who was cramming for his accountancy finals in the hospital room in between walking around the corridors with me to try to move things along. First eleven days overdue and now this? Are you kidding?

Finally, it got too much. When I eventually got a midwife who would understand what I was saying - most of the staff were from overseas - a c-section was arranged. My reasoning was that as I was already exhausted, I would not have the energy to push and even now I wasn't sufficiently dilated. I did NOT want anyone using forceps on my baby's head to drag him out, thanks very much. 

At 10:40pm, 32 hours after labour started in earnest, my 8lb 3oz boy was pulled out, kicking and screaming so loudly, even the doctors looked shocked.

I briefly held him, distracted only by the voice of a doctor stitching me up saying, “We’ve got a bleeder here…” What?

I was barely able to believe that this large baby had grown inside of tiny me. I then quickly had to give him to my husband so I could throw up from the effects of the anaesthetic.

Youngest at five months old, first Christmas

Caesarean a mistake?


I have since wondered if it was a mistake to opt for a c-section, given what was to ensue, but after a day and a half of fruitless labour, I felt there was little choice to avoid the dreaded forceps. I would rather be cut open than have that happen to him. 

So why a mistake, when there was really no choice?

My second baby, 19 months later, was also a c-section. We did try labour but the same failure to efface and dilate was happening. The doctor later noted that I had the formation of some adhesions in the abdominal cavity from the first section which had made the second c-section more tricky.

My second child was born with an unstable hip and needed to be in a splint for 10 weeks. Still no one thought of any connections. Both children now have an EDS diagnosis.


Within a year, I was plagued with almost continual abdominal pain and an investigation revealed that the adhesions had spread and were sticking all my internal organs together. Adhesions, or scar tissue, are very common in EDS (which I still didn't know I had).

Youngest had suffered from Reflex Anoxic Seizures from the age of 13 months so I didn't have a lot of time to think of myself and why this pain was happening. On top of this, my older son who had made his embarrassingly late arrival, was making up for it by walking at nine and a half months old, and now dashed everywhere head on, resulting in numerous trips to the hospital to be stitched up again.

No more babies...


To try to resolve the pain, the only option seemed to be more surgery. This time, a hysterectomy, aged just 35, to remove the spidery adhesions that had welded my inner stomach wall, my bowel, bladder, intestines, uterus and ovaries together. No wonder I was in pain!

It did improve things for a while, but I do wonder if I had had an earlier diagnosis, my maternity care could have been better prepared, potential difficulties might have been foreseen so that more pro-active options for a better labour could have been tried.

At the time of my first delivery, being so big and uncomfortable I just wanted the baby to come out. If I'd had more confidence, I would have avoided going in for an induction and just waited at home for labour to start naturally so I could have been more rested.

It was the fatigue, which plagues my life again today, coupled with poor maternal care in the central London hospital ward, that led to the chain of events ending in my first c-section.
Knowledge is a powerful thing; for people like myself it can mean being able to make informed decisions for our own care and being able to advocate effectively for ourselves (and for our families). I hope that by writing this it may help other women with EDS or who have similar symptoms to know what certain decisions may lead to before they are faced with making them.

Some free to access medical articles about EDS and pregnancy:


Read More »

9 May 2015

#SilentSunday: The art of smiling while screaming


That moment when you perfect the art of smiling so everyone thinks you're okay...
But inside, your head is still filled with the sound of screaming

Read More »

5 May 2015

Thoughts for politicians - and for us all- on doing the right thing



Cowardice asks the question 


- is it safe?
Expediency asks the question 
- is it politic?
Vanity asks the question 
- is it popular?
But conscience asks the question 
- is it right?
And there comes a time when one must take a position 
that is neither safe, nor politic, nor popular; 
but one must take it because it is right.
Read More »

20 Mar 2015

A fictional essay: On being sucked in and churned up by a narcissist

I was reading Quora the other day in the section about psychology and relationships - it had come up in my email feed and I had, as ever, become engrossed.
The question was about being in a relationship or a friendship with someone with a personality disorder such as narcissism; the kind of person who can suck your very soul out of you and never give anything back... and you let them, even make excuses for their behaviour, because they can't help it, can they?

It's happened to many of us in the past; it's certainly happened to me. You tell yourself, sometimes for months or even years, that they'll come good- they'll be who they could be if you just support them or help them...but they never do.

I haven't written fiction for a while, so busy have I been with my special needs work, but this inspired me, so I put the Quora replies and my own experiences together and created this fictionalised account. 


I confess, I'm not an overly tolerant person. But every once in a while, someone comes along who sucks you in without you realising what's happening.

No one else can understand what the attraction is. They're not hugely clever or funny or bring you any kind of joy. And everyone else can see that they should be kept at arm's length. Except you.

They have a neediness about them that resonates with you, somewhere deep within your soul. Some similar experiences, some past angst that chimes with your own past. Then, in the blink of an eye, they have you. You become endlessly forgiving of behaviour you would never tolerate from even a young child, but you almost see them as your baby. They need you. And being needed can be intoxicating.

You can forgive them stupid mistakes and missteps, careless hurts, things they do without realising the effect it may have on others. It's not their fault after all. And sometimes it isn't, quite, but there were always steps they could have taken to ameliorate the harm they've spread around, if they had looked outside of their own need for just one moment.

You can take it, you think. You're strong. Again, repeating, that they can't help it, they need you. You can't abandon them. You couldn't bear to see them hurt. Seeing yourself hurt, well, you can live with it.

Everyone around you is surprised at your new tolerance because you aren't especially known as a "people person". But with this particular person, you feel a connection that means you can forgive them pretty much anything.

Perhaps a traumatic childhood, a devastating adolescence, you see it, damn it, you lived it, and you know that while you managed to develop a resilience that enabled you to claw your way to the top, they developed a vulnerable charm that would have people come running. It is a dishonest picture though, because they could have coped and drawn themselves up as you did. But they preferred to wallow in the pit of others' pity; a soft cushion. Poor me, feel sorry for me and when you stop I'll make you wish you hadn't.

They are passive aggression personified but they would loathe you for mentioning their deficiencies, so you don't. You protect them. They, on the other hand, have no hesitation if you should make a mistake. You will be treated to days, perhaps weeks of glowering silence and sulks deeper than the Slough of Despond. 
To them, the obvious agony you feel at your error is incidental to their need to punish you until they decide you have suffered adequately, or as it seems to them, ensure you understand and regret letting them down. And the kicker? They won't even realise they're doing it.

You have handed your power to them to use against you and you don't even realise it.

And still, and still, your empathy holds firm. You can see their deep gash of an emotional scar of past hurt that they carry around, unwilling to let go of. Hidden to most, they know how to find the people, like you, who can see it and then they use their undeniable charm to draw you in to help them tend the gaping, raw wound.

You want to help - you need to help - because there but for the grace of God and your own bloodymindedness goes you. Something inside you needs to fix this person. A challenge, if you will. The proof that you can go through hell yourself and bring that experience to help someone else.

You try, for far longer than you should. You might give them knowledge, time, assistance, money, things, definitely love -  things you do not really have the time or energy or permission to give away.

You make excuses for your tolerance. Well, they do love you so much ...or perhaps they said a kind word once over this or with that. If it wasn't for them you never would have done this or that, you insist... but none of it is true. They did nothing but take and everyone knows it, had them bang to rights from the start, except you. What an idiot you feel!

You have given, willingly given, to help them, and they took, repeatedly, never seeing that a friendship is a two-way street.

In the end, you have to see that takers are takers. They are toxic. You are sucked in and imagine that you can make a difference, a positive difference to their life.

But they have any number of people around them who feel the same way. They cultivate them. They land on their feet every time. Girlfriends, boyfriends, colleagues, family, friends. They find people to emotionally leech off and make them feel pity and love and a need to help. And, you make sure you never disappoint them because you never want to again see the pained reproach in their eyes, in their voice, in their words or in their heavy silence. And you are sucked in.

Though in your heart, somewhere, you know it is futile.

Because sometimes people are so self-destructive, hopelessly so, that it seems they are aware of what they are doing.  But they are not, they just can't stop.

They can't say the hard words like I love you or appreciate you or even sometimes (often) say, look, I'm sorry I hurt you. I didn't mean to, I didn't think what it would do to you. Your emotions are not their concern.
They can't imagine anyone hurting as much as them.They just watch as everything crashes around them. They make enemies, but even their enemies pity them. If they ever do apologise for something they've done, it will only be because there is something in it for them or because something bad will happen to them if they don't.

They can say the words, but they have no meaning and even when you tell them what effect their behaviour has had, to show remorse or make real amends never happens; that would be admitting they really were wrong.

They promise people who love them things they never intend to fulfil. Yes, we'll do that, one day. I'll be that for you. Just. Not. Yet. Someday. But they'll let you down, every time. And you'll never know it until it's too late. They ruin lives, not least their own.

They may appear to have a bleeding heart empathy for tragic causes, but truly they feel nothing but their own pain. It's so vast that whatever attention you give to them is swallowed up without leaving a trace like a gaping, voracious black hole. People try to help. They fail, because no one has reserves big enough to fill the void.

Can they be helped? Can they recover? In the end, it's down to them truly admitting their need and finding help. But not just any help, finding the right kind of help in the right place, independent of enablers so they can finally stand on their own two feet and look at who they really are.

Are they ready for that? Will it ever be time to stop leaving a trail of destruction and damaged people in their wake?

That includes you. One day you wake up and see things differently, the scales have fallen from your eyes. You've been hurt so many times and your friendship, the push me-pull me affair it always was, is permanently over and you hope you've escaped before you're too deeply scarred. Even though you said many times that you'd always be there for them, whatever they did, your self-respect finally woke up and you realised they would never do anything for you.

The narcissist meanwhile moves on easily, slithering away to hook some other unsuspecting soul. In their world you simply no longer exist, other than as their bad memory of someone they could no longer control.

Their charm, that 'poor, injured-me, please take care-of-me' charm means they have always got away with so much, protected by apologists who still think they'll come good, a constant triumph of hope over experience. You know this; you were once among them.

These are the ones who clean up the mess left behind, even when the narcissist's behaviour - sometimes breathtakingly risky behaviour - has broken hearts, threatened their job or their reputation or even that of their employer.
And sometimes, the protector is the last to know the true extent of that which the narcissist has kept hidden.
That is, until someone else finds out who isn't prepared to keep it secret.

Read More »

27 Jan 2015

How to really look good in clothes

It's the age old question that has made millionaires out of Gok Wan and Trinny and Susannah.

Obviously the answer is to wear clothes that fit well and that suit you but that is often easier said than done. Not only do you have to find those clothes, which can take a considerable time, but the same size varies between stores and once you find something you like, what's the betting that the shop hasn't got it in your size.

As you rarely see people walking around naked, you have to figure that people find clothes that fit at least approximately. But how many of us wear clothes that are slightly too short, too long, too tight, too loose but just because you liked the outfit you bought it even though the size wasn't exactly perfect. And let's face it, getting clothes made-to-measure is not an economic possibility for most of us.

As someone who has mobility problems, I do most all of my shopping online. However this brings the added complication of not being able to see what the clothes look look like on me or if they fit. I also like to order from designer outlet sites such as Brand Alley or Zulily that have limited stocks of each item.  So if I don't get the right size there is no alternative to order an alternative.

Seeing what the clothes look like on the models is really no help. I'm not 5' 9" and a size 6 with legs as long as a giraffe. Nor am I 22, so there's quite a good chance that how the clothes look on the model in the picture is not going to look the same or even (shock!) as good on me. So like everyone shopping online, I have to use my imagination, a hope and a prayer, when I click the add to cart button.

But I have an idea...


3-D technology is improving all the time and it's already possible to scan a human body and put it with the measurements into a computer, so why not not develop a service to scan a person's body measurements (kept only on their own computer, unless by agreement).

With the measurements of the clothes, you can then have fun dressing yourself in the outfits you can get a realistic look at what you're going to look like in the outfit. It's like playing dress up dolly all over again - except Kens can do it just as easily as Barbies.

As it's 3-D you can twist it from left to right, have a look at the back and make an informed decision because with your measurements (including a tolerance amount) you can also see if the garment will fit properly or if you need a bigger size or smaller size. This would cut back on the number of times you need to return items because they didn't fit properly.

If you can't access a scanner the same could be achieved just by taking careful body measurements and inputting them into an online grid which would make the model for you.

This course relies on all the garments of the same sizing to actually be the same size or for accurate measurements for each design to be provided. But really, with a bit of retailer cooperation, this shouldn't be so difficult in the days machine precision design and cutting. It should also take the guesswork out of which size to go for if you just want to pick a size without the mapping.

It may even be that in time that clothes are made to order (with a tolerance, again, as we all go up and down in any month) thus cutting down on all those garments that ended up unsold or unworn.

This may mean that many styles never even make it to the factory floor but that can really only be a good thing because it cuts down on unwanted clothes, fabric and energy. The increased cost in making custom clothes can be recouped by the savings on buying fabric and making clothes that are never sold.

And just think about the environmental benefits. Not to mention the sartorial benefits because no-one will go out looking a mess! 
Images for gif found at http://bit.ly/sensitt

Unless of course you don't believe what you see in the scan.

Moment of judgement


Of course you could take it a step further and have a computer decide if the outfit will enhance your appearance or whether it should be left on the computer. Maybe something like a big fat 'x' like on Britain's Got Talent with an animated jury of Simon Cowell, Victoria Beckham and on the end, your Nan because she'll always give you an honest opinion.

This could also have the added benefit for those who have unreasonable or inaccurate views of what they look like, or who have no dress sense (like me). The computer jury can tell them when they look like the bomb, or when they really ought to go back to the drawing board, or computer screen. My son would be pleased as I usually ask him what he thinks.

Worried about how something will wash? You could even put it through a virtual washing machine to see if the fabric shrinks or the colour runs and see if it really is a good buy after all.

Then I could really see if that spaghetti strap maxi dress will trail along the floor or if I'll look like mutton dressed as lamb in a miniskirt. Really good to know don't you think?

Anything that can cut down on waste and environmental impact has to be good and I'm sure the technology already exists to do this. I'm sure there are drawbacks but they have to be fewer than churning out low quality, badly made clothes that no-one wants.

So if anybody would like to take me up on my idea remember you heard it here first!
Read More »

2 Nov 2014

#SilentSunday: Places I'd love to visit-Novelda

Read More »

25 Apr 2014

"We undiagnosed kids need the chance to be children because not all of us get the chance to be adults"



Read more about Dominic and Renata's journey over on Special Needs Jungle
Dominic: We undiagnosed kids need the chance to be children because not all of us get the chance to be adults.
Read More »

19 Mar 2014

Flashmob St Pancreas: sign the petition, save some lives #pancreaticcancer


Watch the St Pancras Pancreas Cancer Action Flash Mob, then see these two beautiful women that it took from me and our families.

My wonderful friend, Gulshanah, mother of two girls under 9, taken aged 44 in under six months from diagnosis, 2013
My mother, Maureen, taken at 66. Mother of 3 daughters, grandmother of two grandsons.

Sign the petition to the Department of Health to:

Provide more Funding & Awareness for Pancreatic Cancer to aid long overdue progress in earlier detection and, ultimately, improved survival rates



Read More »

9 Mar 2014

#SilentSunday - Fighting Ehlers Danlos Memory Loss.



Read More »

23 Feb 2014

#SilentSunday: Rare Disease Day 2014




Read More »

20 Feb 2014

The British author proving you can make a good living from eBooks


Whoever said you can’t make money from writing e-books, hasn’t met M A Comley.
MA, or Mel Comley, was in the first wave of writers to catch the wave of new authors who were the early adopters of the ebook phenomenon.

Some fell by the wayside of the intensely competitive flurry of wanna-be authors, but Ms Comley, armed with a gift for storytelling and a steely determination to succeed, proved to be the real deal. She knew that this was her chance to realise her dream of being an author and she wasn't going to let it pass her by.
Mel Comley

Just four years on and Ms Comley is an Amazon Kindle Top 20 and Barnes & Noble Nook Top Five bestselling author. She has just published the second book in her second thriller series, Grave Intention.

Ms Comley's first "Justice" series, featuring a feisty but fallible female detective has sold more than half a million copies since its release in 2010, reaching Amazon Kindle's Top 100 in both the UK and the US several times. Its success was mirrored on B&N Nook and on iTunes, with several in the Justice series hitting the Top 10.

Her latest, Grave Intention, is a psychological thriller that follows its predecessor, Sole Intention, released just six months ago. It has opened up a new audience to Ms Comley whose Justice series has made her a familiar name with the ever-growing eBook readership who prefer fast-paced crime novels.

The Intention series is based in the English, West Midlands city of Worcester  and features private investigator, Ellen Brazil. When Brazil is hired to find ex-banker Charles Dugan, who disappeared after his mansion burned to the ground, she quickly discovers that Dugan's penchant for high-stakes poker has earned him a circle of very dangerous acquaintances.

Ms Comley said, "Worcester is a place dear to my heart and an area I miss dearly now that I live in France. It's a different type of novel to the ones I'm used to writing and there's definitely a twist at the end that will give the reader an ahhh moment.  It's loosely based on a true story that hit the headlines in the UK a few years ago.
"I tend to base my books in places I've lived. The Justice series is based in London and Kent, the Intention series takes place around the Worcester area. A third series I've begun, Hero, is located in Manchester, so I've covered a good chunk of England!"

Before her success, Ms Comley was living with her mother in France, renovating properties and recovering from an unhappy marriage. After attending a creative writing course, she knew the direction she wanted to travel and she had the work ethic to make it happen.

"I do work hard – often 100 hour weeks and my mum, who's my biggest fan and most trustworthy critic, is always there to make sure I remember to stop and eat! At the start people said you couldn't make a good living publishing eBooks, unless you got snapped up by a traditional publisher. I've been approached several times, but I prefer the control I have over my own destiny.
"I was lucky to be in the first wave of eBook authors and have built up a loyal following – as well as a thick skin at times! And I am making a living – a very good one. It's like the old Gary Player quote: 'The harder I work, the luckier I get'."

Grave Intention is available in EBook format on all Kindle via Amazon, Kobo and B&N Nook sites.  Keep up with M A Comley at her website: http://melcomley.blogspot.fr/ and by signing up for her newsletters

To find her new book, go to your local Amazon, Nook or Kobo site and enter the book ids below:
·       Amazon ASIN: B00I9K31YK
·       NOOK ID: 2940148171904
·       Kobo: ISBN: 1230000216350




Read More »

2 Feb 2014

#SilentSunday: Mother's little helpers?


Read More »

24 Jan 2014

Sucked into the black hole of a rare disease

It's fair to say that my life has changed completely in the last year and a half.
Not just my day to day life, but also my hopes and my expectations of how life would be once my children left home - if they ever do.

I am blessed with not one, but three rare diseases, Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia and an extremely rare eye condition called Punctate Inner Choroidopathy (PIC). 

I have endured constant pain, the inability to stand for long or to walk far, unrelenting fatigue and at times, like now, impaired vision with the added delight of having things floating in my eye that make me convinced insects are crawling near me.

I have cried and grieved and complained and felt sorry for myself. I have often contemplated whether it is worth continuing.  Sometimes it seems like the only point to staying alive is so that my children are not left with the burden of my no longer being here. I yearn to run away from myself.

But that's all on the inside, as invisible to onlookers as the illness itself. I have almost become four people. The one people can see, the one I am inside, the one that has accepted my limitations and tries to work with them and the destructive and overpowering me that will push forwards with my dreams, whatever the cost to my health. 

On the outside, I am the plucky trier, bravely battling on within my limits, finding ways to get things done, finding help and treatments. Helping others affected as best I can and continuing and expanding my special needs website.

Aren't I amazing? And I look so good considering everything! This is what I am told - I'm never sure if it's meant truthfully or if it's just to gee me up. Whichever, the words are full of good intentions and I am grateful for them.


But the daily irritations take their toll. The uncontrollable perspiration when I drink or eat something hot. Not every time; it likes to surprise me. The fatigue that creeps up like a car slowing to a halt as it runs out of petrol, while knowing I still have to get in the car to collect the boys from their school, five miles away.

And then there is my constant companion, the pain. 

The pain is multi-faceted. There is the all over body pain that begins to buzz, quietly at first when the Tramadol runs out if I have forgotten to take it, then quickly building into pulsing through my calves, my thighs, arms, fingernails. There is the joint pain, controlled by a different drug but when it has kicked in, it's hard to even pick up a cup of tea. Then there is the gastrointestinal pain of stretchy insides and now a new pain, a labral tear in my hip that is likely to need surgery. No drugs work on this pain.

Plucky me has joined Facebook groups, forums, charities because knowledge is power and helping others helps me feel less like an empty space.

But the worst pain is on the inside. The pain of feeling that I am letting people down. That I forget things I am supposed to do because of the medications; that I cannot do enough around the house and that falls on others; that I need to sleep when I should be being useful. That my husband spends the weekend after a hard work-week running around after the boys and fetching me cups of tea.

The emotional pain of wanting things to happen that are never likely to be possible. Relationships have changed forever. I have changed forever. 

But the me I cannot quiet is the one that still comes up with creative work ideas and plans that I really want to do, if only I had the energy. I push myself to make things happen at the cost of exhaustion because I am not ready to accept defeat. I am not willing to accept the truth of my new reality. I am not sure I ever will. This me is my downfall. 

She's the one that wants everything with no limits. The one with dreams who wants to be living and laughing. The one that wants to go places and meet people and have fun.  The one who wants to love and be loved passionately, absolutely, energetically. The one with hopes and ambitions.

I can't shut her up. I can't cram her into a box and sit on the lid until she suffocates. Her spirit is too strong, her heart beats too loudly but she is trapped in a body that will not comply; the body that has never complied if I am honest. The one that always got me so far before it collapsed from exhaustion while my brain failed to shut down too.

I am no closer to peace than I ever was. I am very good at what I do and I don't want to give it up despite doctors, friends, family telling me I must so I can cope.

But I can't. I want it all. I always will. So I will live with the grief because the truth and acceptance doesn't fit. It never will.

So if you love me, you'll just have to love me for who I am and the way I am. Flawed, sometimes flaky but maybe worth caring about. Maybe.


Read More »

19 Jan 2014

#SilentSunday: Here's to the crazy ones who change the world.

Image: Tania Tirraoro. 
Read More »

5 Jan 2014

#SilentSunday Resolutions

Read More »

29 Dec 2013

#SilentSunday Christmas Sparkle

credit Tania Tirraoro to re-use non-commercially
Read More »

21 Dec 2013

Christmas, loss, love & friendship and hopes for a better 2014.

Ah, Christmastime, eat, drink and be merry. I said BE MERRY, damn you! Peace, goodwill and all that.

2013 has not been the most auspicious of years for me. Actually it's really been quite horrid, with an occasional hint of a bright spot that has just about made it bearable. One of those included speaking at MumsNet Blogfest, which was quite a large bright spot.

My Blogfest session Photo: Anna Gordon

I'm not a religious person, but I am spiritual and to help survive the bad parts of this year, I've been trying to listen more closely to my psychic intuition.

In fact, something I read by Wayne Dyer the other day has changed my thinking even more. Dr Dyer wrote in one of his many books, You'll See It When You Believe It, that we are "not a body with a soul, but a soul with a body."

This concept has helped me enormously after the death several weeks ago of my wonderful friend Gulshanah. I understand now that she is not gone, but simply released from a body wracked with disease and pain. This does not, of course, make it any less painful for her family and friends, me included, that she is no longer here physically, but I have a peaceful feeling that I believe comes from her. It was incredibly distressing to witness, but I did my best to be a good and supportive friend and she knew that I loved her and will continue to do what I can.

So, life has been tough for both me and for my husband this year. This time last year I was acutely ill. A year on, my Ehlers Danlos Syndrome & POTs has become chronic with increasing joint pain and I am a part-time wheelchair user. If it hadn't been for the support of family and friends, including Gulshanah, as well as online groups such as RareConnect, I am seriously not sure that I would still be here to write this.

Another misery of 2013 is that my husband was out of work for five months and while it was devastating for our bank balance, having him around to rely on to take care of everything, and me, gave me a chance to rest, although a return to health isn't yet on the cards.

The losses, of a dear friend, my health, and temporarily, of our family income, have meant 2013 has been incomparable in terms of the amount of stress being heaped upon our heads. And of course, there are always the inevitable challenges of raising two Aspergic adolescents through the hormonal highs and lows of their teenage years.

Despite my illness, there have been people who still did their best to make life even more difficult for me, but I have been fortunate to have friends, both near and far, who have been there with good words and kind deeds.

I have learned that you must never underestimate the power of love, friendship and kindness. It has literally saved my life this year. Support, whether via a hug, a kind word, a thoughtful email, Facebook message or a Skype chat, or just by bringing me a cup of tea during a meeting so I don't have to get up, has made a huge difference. Even someone just thinking ahead to make sure I can get where I need to be in my wheelchair makes a difference and means I don't feel like I'm a nuisance or in the way.

If you have a friend who has a long term illness, a better way to show concern is instead of asking how they are, show them that you care about them. Asking "How are you?", means I can either say, 'Fine' (which is not true) or just shrug and give a wry smile, because I'm pretty sure that you don't want a lengthy run-down of how I actually am.

I'm hoping for a much better 2014 and that I can be a good friend to my friends when they need me and be well enough to support my family.

Although, as I said, I'm not religious, I have found that a particular passage from the Bible, I Corinthians 13:4-8 to be precise, can help us all with caring for others. You don't need to be a Christian to agree with it, either.

It's about love, but it goes just as well for friendship. They are also words I try to live by, though not, it has to be said, with total success at times. After all, I'm only human and far, far from perfect.

If you are trying to be a better friend or a better partner to the one you love, perhaps let these words guide you too. Please don't look at your other half and ask them why they aren't like this to you; just try to be like this to them and see what happens.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.  8 Love never fails.
c: NotAsAdvertised2013
Read More »

8 Dec 2013

#SilentSunday Rockstar in Training.

Read More »

1 Dec 2013

#SilentSunday: A Parenting Truth To Live By




Read More »

10 Nov 2013

Adventures at #Blogfest #Silent Sunday (Captions excepted)

Renata from Just Bring the Chocolate, Jenny from Cheetahs in Shoes & Me!

Jenny & Renata

Me, right on the Campaign Blogging panel. Banging on as usual


Closer view.. and another thing.


Lionel Shriver who writes JUST like I expected her to, without significant redrafts.

Jo Brand


My thank you cookies from MumsNet, but I'm the one who should say thank you


Read More »