22 Dec 2015

Can you help #careforLaura crowdfund fund life-saving surgery for Laura's Ehlers Danlos syndrome?

As you may know, since 2013 have been disabled by the rare disease (or rarely diagnosed disease), Ehlers Danlos syndrome. I've been at rock bottom and have, with the support of my husband, managed to drag myself to a somewhat precarious place where I can work a few hours a day.

Days out or meetings are always a knock back but I build the down-time in. I've know that I'm lucky to have got to my mid-forties before this genetic condition hit me with its full force.

Recently, I was put in touch with another woman who lives close to me with the same condition. Laura Sylvester and I met for a coffee in Farnham, where she told me her story. 
Laura is just 23 years old, beautiful, smart and determined. A lover of sports, Laura was studying for a Masters degree at Imperial College, London, when EDS took hold. She became so unwell she had to pause her studies and return home to be cared for by her parents.

Laura's condition has continued to deteriorate and her vertebrae are now so unstable, it's put her life at risk. She needs vital neurosurgery that is only possible from a particular surgeon. He happens to be in the US and so this is going to cost a lot of money. A lot of money that Laura and her family don't have. 

However, I mentioned that she is smart and determined, and so Laura has launched a crowdfunding campaign #careforLaura, to ask for people to help her reach her funding goal so she can have the surgery early next year. This will mean she will be able to resume her studies and, although she will still have EDS, she will have a shot of achieving her goal of becoming a geologist.

Here, Laura tells her own story:

Can you help #careforlaura?On 7th August 2014, I was diagnosed with a rare genetic disease called Ehlers Danlos Syndrome (EDS) with PoTS (Postural Tachycardia Syndrome). EDS causes the connective tissue throughout my body to be extremely stretchy and easily breakable - there is no cure for it. Over time, my muscles in my neck have become very unstable, which has further led to dislocation/subluxation of my vertebrae, disruption of my spinal cord ligaments, and compression on my cerebellar tonsils and brain stem.

Suddenly my life was flipped upside down and this degenerative muscular condition caused me to deteriorate quickly, forcing me to postpone my Master’s degree at Imperial College, return home, and be cared for by my parents.

Once an extremely sporty, sociable, positive and driven young woman, I have become tremendously vulnerable. I am in extreme pain, I wear a neck brace all day, and I am at constant risk of further damaging my brain stem, that would consequently cause me to stop breathing.

I am in desperate need of specialised EDS neurosurgery which will be done on 13th January 2016 in Washington D.C., USA. There are few experts in the world who can do this. The total of the medical expenses, travel and recovery is very high. I hope and NEED to raise at least £75,000 ($110,000) to fund this.

The surgery will create stability in my neck and stop the compression on the brain stem and cerebellar tonsils, essentially saving my life. This will enable me to carry on living my life as a normal 23-year-old, hopefully mostly pain-free and without the worry of causing further damage, which could otherwise prove fatal. 

Even though the surgery will offer me the stability that I need, unfortunately it comes at a cost of losing complete movement of my head and neck. Nevertheless, I am determined to adapt to this and begin fulfilling my dreams once again and resuming my Master's degree.

Any amount of donations and support for this specialist neurosurgery will be so tremendously appreciated, not only by myself, but also my family and friends. Please do consider contributing to the first major stepping stone that I need to live my life without fear.

22nd December 2015:

Laura is now within £5000 of her target - an INCREDIBLE achievement in just two weeks. Can you help push her over the finish line?

Read their story here

For more information about EDS, visit EDS UK
For new stories about EDS, check out my Tumblr news site A Rare Diagnosis
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2 Dec 2015

How to rejuvenate your skin in two easy steps

You may have seen my previous post about visiting the S-Thetics medical aesthetic clinic in Beaconsfield, Buckinghamshire when I sampled the delights of Allergan Juvéderm fillers. If not, take a look at the video I made demystifying and informing you about the procedure, which really made a difference not only to my 48 year old face but also to my confidence.

endymed image slate

*Scroll to the end to watch the short video

Surgeon, Miss Sherina Balaratnam, who owns the clinic, invited me to return to try out her Signature facial treatment, which consists of a session with a revolutionary non-invasive EndyMed™3DEEP® radiofrequency treatment.  That's followed by a luxurious Fire and Ice facial tratment that is described thus:

"Pioneered in Beverly Hills and coveted by A listers globally, this renowned intensive treatment is clinically formulated with the purest pharmaceutical grade ingredients and designed to offer the ultimate results driven facial treatment.

The Fire & Ice treatment gives the skin a deep cleanse, leaving it with a beautiful glow. Your skin will feel plumper, smoother and more hydrated, leaving you ready to face the day! This treatment is ideal as a one-off skin rejuvenation treat, but for more intensive and long-lasting results, we recommend using once per week over a six week period."

How does the EndyMed™3DEEP® work?

The EndyMed™3DEEP® is a non-invasive radiofrequency treatment, designed to stimulate collagen, combat loss of elasticity, wrinkles and impaired texture that, let's face it, are for most of us, part of life's little expectations when we are lucky enough to have made it thus far. But it doesn't have to be that way.

"Using radio frequency (RF) energy, EndyMed™3DEEP® safely heats the collagen in the skin making it contract, providing an immediate change in skin appearance.  The treatment also triggers a second process of new collagen production, stimulating your body’s natural collagen renewal process leading to skin tightening and a reduction in the appearance of wrinkles."

You see, this is why those celebrities look so amazing for their age. It's not just good genes, it's great maintenance and luckily, it's not so expensive that it's completely out of reach if you are not famous.

Back at the S-Thetics clinic in Beaconsfield, Bucks, Sherina shows me the Endymed machine, which does indeed look very medical. Reassuringly so. The other factor that takes away any concern is the fact that Sherina is a highly experienced medical doctor and surgeon (hence the 'Miss' and not Dr).

Why did I go for it?

I had noticed in recent months, the skin of my lower jaw feeling a little thinner, less taut and more fragile. Almost certainly no one else would have noticed it, but it was just that the 'quality' of it I could feel had changed. So when Sherina offered me the chance to try out the treatment, I didn't hesitate, especially knowing I was in such good hands.

In any case, I'm not interested in pleasing anyone else - my husband loves me as I am - but I'm just not ready to see in the mirror a face that doesn't reflect how I feel inside. Living with a chronic pain condition can make you feel battered and old before your time, so for me, looking the best that I can helps keep my spirits up.

Back at S-Thetics

In the quiet sanctuary of the S-Thetics clinic, I lay on the treatment bed while Sherina began the EndyMed Facial Tightening treatment. The hand-held part of the EndyMed device reminded me a bit of an ultrasound and as Sherina applies it to the area being treated, my lower face, I could feel the heat penetrating through some contact gel into my skin. It wasn't unpleasant and it didn't hurt. The temperature is monitored and when I indicated, as instructed, that it was approaching the limit of comfort, Sherina knew that it had done its job.

The treatment was very quick, painless and you could have gone straight back to work if that's what you wanted to do. Of course I was just testing out one session, but a course of six is recommended for long lasting effects.

On to the Fire and Ice

The second part of the 'Signature treatment' is the Fire and Ice facial treatment. Most of us have had facials, but this one is a multi-step procedure that peels and resurfaces the skin with 18% unbuffered glycolic acid, citric acid, lactic acid, malic acid, vitamin B3, retinol and potent antioxidants, including green tea extracts. That's the 'Fire' part but it didn't hurt in any way. I have very sensitive, allergy-prone skin and I was a bit nervous that I might have a reaction, but everything is based on natural, botanical ingredients and I was perfectly fine.

The Fire part is an intensive clinical treatment designed to reduce fine lines and wrinkles and provide deep cleansing of blocked pores. 

The second 'Ice' stage is another masque application that is cool, soothing and intensively hydrating. It contains hyaluronic acid, often described as 'the fountain of youth',  Japanese green tea extracts, aloe vera gel, liquorice extracts, rosemary extracts and grape seed extracts. This second masque cools the initial resurfacing and is left on for about 5 minutes. 

After a final cleanse, a moisturising serum and a strong sunscreen are applied to the face because the treatment will leave your face susceptible to the sun for a short while afterwards. 

The Verdict

I'm often sceptical of facial treatments because I rarely feel any different afterwards apart from a bit lighter in the wallet area. But the S-Thetics Signature treatment honestly made a big difference to my middle-aged skin.
It immediately felt plumper and firmer and to me, it looked much brighter and less tired. 
But it was the EndyMed radiofrequency treatment that has made the lasting difference. The fragility I was feeling in my neck and lower jaw has disappeared along with any slight loss of elasticity I had noticed. Now it's back to what it was at least a decade ago. 
My neck especially has shown the benefits. The treatment has tightened all the collagen in my skin so that it's all back where it used to be and I am delighted! 

Ideally, I would have the full course of six treatments but even with just one, the effects have already lasted several months. I'm rather late with this review but in this case, it means I have had a chance to see how the treatment has lasted - and it really has nipped that first sign of sagging skin in the bud and I would recommend it to anyone my age or even younger (depending on how your skin is faring). 

It works just as well for older men and women too - possibly it would have even better results - and its benefits are not restricted to the face. It can treat sagging body areas as well including the abdomen, arms, breasts and bottom. It really is an amazing treatment and if I sound as if I'm raving, it's because it really is worthwhile having, to give you a confidence boost. 

It's true that for many mums, this kind of thing is a luxury we can't often afford, but when I work out how much I've saved by giving up alcohol for example, that would easily cover a treatment every so often. 

And of course, it's nearly Christmas, so if you're looking for a no-down-time treatment to give you that skip in your step for the festive season, look no further than S-Thetics Signature EndyMed™3DEEP® and a Fire and Ice facial.

Thank you once again to Miss Sherina Balaratnam of S-Thetics in Beaconsfield for her generosity (and her patience!) I cannot recommend her enough.

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10 Nov 2015

Invisible Disabilities Week: Our experience with treatment for Ehlers Danlos syndrome

This week it's the Care Quality Commission's #InvisibleDisabilities Week and today, they're highlighting Ehlers Danlos syndrome which as you know is the delightful multi-systemic condition with which my sons and I are diagnosed.

I managed to get through to my forties before I became very ill with EDS in December 2012. It followed a return to paid work which I threw myself into as well as managing Special Needs Jungle which had come into its own the same year. I might have got away with it if it wasn't for the fact I was also falling into the swirling vortex of an unexpected early menopause, again due to consequences of EDS.

Looking back, I began to suffer the racing heart symptoms of PoTS before I'd started the job that March 2012, but I had shrugged it off, the same way I had just carried on my whole life up until then.

At various stages I'd suffered with weak ankles, broken limbs, strange sharp pains that would come and go, dizzy spells, an inability to stand for long without back pain, pleurisy, gastro problems, fatigue, mysterious abdominal pains, a constantly stiff neck, frozen shoulder and even a slipped disc. On top of this was an intractable depression that started at 16 and has plagued me on and off ever since as well as other mental health difficulties.

These are all symptoms of Ehlers Danlos syndrome, but dots had no chance of being connected - no one had ever heard of it. It was far more likely that you'd be diagnosed with a huge case of being a chronic hypochondriac.

Because it was the 70s and I grew up in a single parent, working-class family, you just got on with things and I was out of the house more than I was in it. Maladies were dealt with matter-of-factly and a constant forward motion was encouraged. The standard refrain was, "You'll be alright when you get going." It serves to make you resilient but even the resilient have their limits for coping.

Whizz forward a few decades and I twigged that Son2 was suffering from symptoms matching EDS, that I had discovered during a search of the Genetic Alliance UK website for Rare Disease Day. Of course I realised I had the same, but I was alright when I got going, as I had been taught so long ago.

My GP had never heard of the condition, so I was able to give her some information from the support charity, EDS UK. I had also researched the options for consultants and discovered there were not only very few, but the wait was ginormous.

We opted to pay for a private consultation with the pre-eminent specialist in EDS, Professor Rodney Grahame at The London Hypermobility Unit where he was diagnosed. Several months later, being alright when I got going just wasn't working and my own body metaphorically fell off a cliff from too much work, stress and too few hormones. I was also diagnosed privately by the Prof.

The CQC-led Invisible Disabilities Week want to hear tales of our treatment experiences. For my son and I, they are vastly different.

Son2 was referred back into the NHS at our request, and Prof Grahame recommended Dr Nelly Ninis, an extraordinary Paediatrician at St Mary's, London.  Dr Ninis sees many children with EDS and sent Son2 for a 24-hour ECG and an echocardiogram on his heart. This is standard in EDS because of the possibility of mitral valve prolapse and abdominal aortic rupture if you have EDS IV.

tilt table

Because he also had suspected Postural Orthostatic Tachycardia (PoTS), he was given a Tilt-Table test where he was found to definitely have this condition too, which is very often seen as a part of EDS.  Stretchy collagen means the blood vessels in the extremities do not respond quickly enough on a postural change, e.g. standing, and so blood drops to the feet. The heart then responds by racing to try to get blood back up to the head which makes you feel very dizzy or you can pass out completely.

Son2 had his ECG and echo locally and it was apparent that the doctor we saw had little real understanding of EDS beyond the 'headline'. He also once kept us waiting for 45 minutes, by which time Son2 had become very 'Potsy' and thrown up and I was exhausted. I was not best pleased, as you can imagine.

Dr Ninis recommended Hydrotherapy,  but the local physio team were very nervous of his possibly fainting with the heat of the water. He was fine for most of the sessions and did benefit. However, the problem is, hydrotherapy is designed for short-term use with just six sessions, which just isn't sufficient for a long-term condition. It's also under-resourced and hard to find. This is mad - hydro is an ideal gentle exercise that can help to transform the lives of people living with chronic pain, if only they could get it or even knew about it.

hydrotherapy sign

Son2 also tried with local dry-side physio, but again we encountered the problem of a lack of understanding of EDS beyond what they might have read in a medical reference book. As Son2 also has Asperger's, he is also very sensitive to personalities and took an instant dislike to the bossy physio and her insistence that he give her a "grading" with a counter in a slot rated from Excellent down to Poor. He rightly pointed out that he felt he had to give her full marks as she was standing right next to him and so he declined to take part. We didn't go again.

Dr Ninis, who is kind and compassionate and most of all understanding, sees him every three to six months, although it's an arduous journey to St Mary's from our home in Surrey. It means my husband needs to take the day off as my own EDS means the drive is impossible for me. As a contractor, this means the loss of a day's pay.

How was it for me?

My own experience has been much worse in many ways. After diagnosis, I too had to go back into the NHS as we can't afford to keep paying for something we already pay for through taxation. It was seven months before I saw the EDS consultant, Dr Hanna KazKaz at UCL. She referred me for the Stanmore hypermobility rehab course. 

The wait for a first visit for Stanmore assessment was over a year and then it was another eight months before I managed to get on the course. Shortly after I was accepted for the rehab, the list was temporarily closed due to the waiting times already being experienced. It's the only one in the country I believe, so it's hardly surprising they are overwhelmed.

The wait for PoTs diagnosis was even longer. Again we paid for an initial appointment to see the eminent Professor Chris Mathias in May 2013 but the tests would cost £1800 so we waited to see his former NHS team, as he had retired from the NHS himself. The wait thereafter was interminable; a year for a consultation, another few months before the Tilt Table test and a further 10 months for the results of the tests. In retrospect, perhaps we should have paid for the whole lot privately, but hindsight is 20:20.

Where's the care?

For both Son2 and myself, every aspect of this has been driven by me, from the realisation of what the problem was to finding the consultants, to going back to the GP time and again to ask for other referrals.

There is no joined up care, there is no creative thinking, there is little thought of the patient experience. Certainly not when the available doctors for the conditions are so few and far between and the waiting lists are so very long.

Neither is there local coordinated long-term care. I understand GPs are generalists and very busy, but I would have hoped that when one family's members in the practice are diagnosed with the same complex, rare condition and the children also have autism, a more proactive approach might be taken. At least to read up on it a bit.

It's a long-term condition, but we have been left to find our own solutions and there is no monitoring. Our experience is very far from the ones described on this CQC page

 It's no wonder so many cases of Ehlers Danlos go undiagnosed.

Tania being resilient
Being resilient with my long-suffering husband

Lucky for me that I'd had that "just get on with it" upbringing, because the pressure to cope with offspring with autism, EDS and PoTS as well as my own chronic pain is immense. Indeed, in the past I have cracked under the strain when that one thing comes along and causes overload. I have had to seek psychological help. but we won't even go into the debacle that the Mental Health service is, and continues to be.

This may seem like a critical post, but it is only critical of the resources and the structures that prevent medical professionals giving the care patients need, particularly in the field of rare diseases. Long term health conditions have a psychological as well as a physical impact, even when there is no specific mental health problem. Feeling cared for and that your experience as a patient actually matters, is a huge part of that. It's all part of that joined-up experience that starts and finishes in the GP surgery as what should be the coordinating service.

However, with a shortage of GPs and constant pressure to give more for less put on them by politicians, it is hard to see how this will improve. Perhaps the increase in patient participation boards may make this difference, as a reminder that a 'patient' is also a human being.

The question, "Would this be good enough for your child or parent?" is the mantra everyone employed in caring services should recite every day.
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9 Sept 2015

Not ready for wrinkles: My facial rejuvenation with Juvéderm CosmeticFillers

The years zip by so quickly, especially when you have children. You're naturally more focused on them especially, as in my case, when they have special needs.

Throughout my 30s, it was just head down, full-on searching for the right help and the right school as well as dealing with their difficulties.

Then, in my mid-forties, just as I was starting to get more time to start working part-time (besides founding Special Needs Jungle), I was knocked down by a huge and lasting flare up of Ehlers Danlos syndrome. It was prompted by hormonal changes and regrettably throwing myself into a new work challenge on top of everything else. My body ended up in a state of collapse. Since then, I've lived in pretty much constant pain, with limited mobility and that definitely takes its toll.

I remember catching a glimpse of myself in the mirror one day; it took a second before I realised it was me, worn out with dark shadows under my eyes. I looked again, a little closer, noticing the lines on the forehead, around the eyes and from nose to mouth that seemed to have appeared or become more pronounced in a short space of time. I tried to shrug it off, after all, I was getting older and lucky to be so, having lost dear friends to cancer in recent years.

But still...I didn't feel ready for wrinkles.
Sherina talking about the visia
Sherina explaining my skin analysis

Soon after this, almost as if the universe was watching, the BritMums Blogging team put a call out for someone prepared to have a consultation about Juvéderm® cosmetic fillers and in exchange, to write about it. Well,  I didn't need asking twice - this might just be the pick-me-up I was looking for!

As we grow older, our skin loses moisture and elasticity and begins to show the signs of ageing. You've probably heard of hyaluronic acid; it is often called the "fountain of youth" and can be found in moisturisers, serums and is also used medically to improve joint disorders, so it's a safe substance.

Juvéderm® by Allergan, make injectable fillers using hyaluronic acid and say it's the only way to replenish the hyaluronic acid deep within skin. Juvéderm® says it was developed to be smoother than most hyaluronic acid dermal-filler treatments. This makes it easy to inject and gives the face a very natural look and feel once it’s in the skin.

I've had facials before of course, even had a facial with acupuncture, but I didn't know much about cosmetic fillers. However, thanks to Britmums, Allergan and Miss Sherina Balaratnam at S-Thetics in Beaconsfield, Buckinghamshire, I decided to take the opportunity to find out, up close and personal...

It's fair to say I'm pretty thrilled with the results. Several people have said how well I'm looking and one medic I saw at an appointment had to do a double take at my age on the form when I saw her. Now that's a result, I'd say!

If my video has started you thinking that perhaps it might be something you would consider, then these links will be of use:
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20 Aug 2015

Why "good enough" may never ultimately, be good enough.

My sons are now both sixth-formers and thinking about (hopefully) where life might take them. As they have Asperger's, 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. Son2 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
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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 Son2 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 sons 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.

Son1 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 crisscrossed 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 Type 3. 

 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.

Son2 with his splint for unstable hips that he wore 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.

Son2 at five months old, his 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 son was born with an unstable hip and needed to be in a splint for 10 weeks. Still no one thought of any connections. He also now has 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).

Son2 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:

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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

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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.
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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.

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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!
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