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.
This blog is for the slightly random stuff about life that doesn't fit on my fairly awesome, award-winning site, Special Needs Jungle
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.
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.
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| 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
23 Feb 2014
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.
.jpg) |
| 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.
To find her new book, go to your local Amazon, Nook or Kobo site and enter the book ids below:
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
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.
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.
Read More »
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.
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.
19 Jan 2014
5 Jan 2014
29 Dec 2013
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.
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.
Read More »
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.
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| c: NotAsAdvertised2013 |
8 Dec 2013
10 Nov 2013
Adventures at #Blogfest #Silent Sunday (Captions excepted)
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| Renata from Just Bring the Chocolate, Jenny from Cheetahs in Shoes & Me! |
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| Jenny & Renata |
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| Me, right on the Campaign Blogging panel. Banging on as usual |
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| Closer view.. and another thing. |
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| Lionel Shriver who writes JUST like I expected her to, without significant redrafts. |
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| Jo Brand |
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| My thank you cookies from MumsNet, but I'm the one who should say thank you |
20 Jun 2013
21 May 2013
The vicious three headed dog of EDS, POTS & Chronic Pain
I'm writing this post as part of Ehlers Danlos Syndrome Awareness Month, with which both Youngest and myself have recently been diagnosed, along with Postural Orthostatic Tachycardia Syndrome (POTS) and Chronic Pain.
It's a fearsome triumvirate rolled into one, like Cerberus, the three-headed mythological dog that guards the entrance to Hades.
I'd like to write something positive about it but there isn't anything, as far as I can see.
In the last six months- in fact, I can now see it was building up for months before that- I have gone from being busy, capable and productive to feeling like a hollowed-out wreck.
I can no longer work a job as my health is too unpredicatable. I have to use a wheelchair to go further than a few yards, which embarrasses my kids, the rest of the time I need a stick to lean on. The simplest tasks use as much energy as a mountainous trek.
Not that I've ever been on a mountainous trek - I now know that I've always had EDS at a low level, undiagnosed, but I thought being low-energy, often dizzy and in a certain amount of pain was pretty normal.
Weak ankles? Slipped Disc and chronic back pain? Painful adhesions? Sore joints? Didn't everyone get this type of thing? You just had to keep going, didn't you, using whatever made you feel better. Which, in my case, is a glass of hot whisky. Sometimes two.
I'm a lifelong gym abandoner. I love the idea, but ten minutes in I'd get dizzy and nauseous so I'd eventually stop going. Now I know this is part of Postural Orthostatic Tachycardia Syndrome, a feature of EDS.
Still I got this far. 46 in a couple of weeks or so. 6th of the 6th (no surprise there, many will say). Married to a very, very understanding man. Had two kids, both, as you know, with Asperger's. I almost certainly have that too. There is some anecdotal evidence the two have some links.
Keep going. Don't give up. Move forward. One day at a time. It's how I was brought up, to just get on with it.
Six months ago, it all blew up in my face. Doing too much, an over-reliance on adrenaline to get through the day, gradually feeling like things were spinning out of my control. Trying to keep on top of everything. I wrote a post here about the Tumble Drier breaking and it being the final straw. I didn't know then how true that was and how that was just the start of my life crumbling catastrophically before everyone's eyes.
I didn't realise back in 2009, just how apt the title of this blog about a life 'Not As Advertised' would become.
I've tried to make adaptations. Put a brave face on it. Laugh at myself so people don't pity me or feel uncomfortable. Pace myself (ha!).
I did a few things last week: Spoke on an SEN panel, hobbled through parents' evening having to explain over and over why I need a stick. Actually I needed a wheelchair, but the venue was on two levels and I was too embarrassed to get it out. I knew it would be a hassle for everyone, so I made do with the stick. Went for dinner with the family on Saturday night, was quite cheerful.
Paid for all that by spending the last three days in bed on Tramadol. Which is usually followed by throwing up, but a period of no pain is worth one session of vomiting.
Everything I try to do takes at least double the time. Talking to people, whether on the phone, online or in person is exhausting, because I put too much into it. It's not the kind of thing you can pace, talking. So I avoid the phone. I avoid people. I prefer to message or email.
I open up my laptop and see many, many unanswered emails. Feel tired all over again. Decide to pace myself by shutting the laptop again.
I still write, though less, and I can still read, though for shorter periods.
I can do some things with help: Cook and do some things in the house (see this post)
Now I've got a disability parking badge, I can go to occasional SEN meetings more easily. But the fact that I had to apply for one in 2013 when in 2012 I was "flying" is almost incomprehensible.
I still have my boys and my husband. There are no words to describe how wonderful my husband has been and how bad I feel for being so useless in return.
My kids, well who knows? Eldest has made no allowances. He doesn't like change and so is ignoring that anything has changed.
Youngest also has EDS and POTS and, like me, is still going through testing/treatment. Youngest was diagnosed first although I knew I had similar symptoms. It was only when they blew up in my face that I was forced to do acknowledge that this wasn't normal, actually.
I need to protect both my children and ensure they get everything they need. Ah, I still have a purpose, a reason not to give up.
But living for myself? That involves finding 'new ways forward', I have been advised.
I'm an old dog; not sure new tricks are my thing. Is the alternative worse? For others around me, yes. Not for me. For now, that will have to be enough.
Some useful links:
Join the RareConnect EDS Community
Join EDS-UK
Join The Hypermobility Association
19 May 2013
10 Apr 2013
Flipping fantastic, wheely great - gadgets to keep yourself going
So recently, I have found myself rather incapacitated and standing for longer than a few minutes is proving difficult.
It seems that while I was working in the sphere of one particular rare disease, another kind, EDS, that I have unknowingly had all my life, undiagnosed, was about to knock me to the ground and wipe the floor with me.
I was fortunate for a while that my husband had a gap between contracts and took over the washing, driving the kids about and doing the cooking while I spent large parts of the day asleep and generally being useless. I haven't been to the shops since November and am not likely to for the forseeable future. Thank goodness for online groceries and home delivery!
Eventually, my husband started his new job and I am now having to find ways to get about and do things like cook etc.
Being a solution-focused person, I sought out some mobility aids and this, demonstrated using Twitter Vine, is what I found. I thought I'd share them in case you or someone you know might find them useful.
First the seat flip-stick, a helping hand for standing longer.
Secondly, the saddle seat on wheels, height adjustable, so that I can do things at the counter-top and so on. Obviously, getting someone else to do it for you is preferable but not always possible.
The stool on wheels is a particular hit with the kids - now we need another to have races down the hallway...
Read More »
It seems that while I was working in the sphere of one particular rare disease, another kind, EDS, that I have unknowingly had all my life, undiagnosed, was about to knock me to the ground and wipe the floor with me.
I was fortunate for a while that my husband had a gap between contracts and took over the washing, driving the kids about and doing the cooking while I spent large parts of the day asleep and generally being useless. I haven't been to the shops since November and am not likely to for the forseeable future. Thank goodness for online groceries and home delivery!
Eventually, my husband started his new job and I am now having to find ways to get about and do things like cook etc.
Being a solution-focused person, I sought out some mobility aids and this, demonstrated using Twitter Vine, is what I found. I thought I'd share them in case you or someone you know might find them useful.
First the seat flip-stick, a helping hand for standing longer.
Secondly, the saddle seat on wheels, height adjustable, so that I can do things at the counter-top and so on. Obviously, getting someone else to do it for you is preferable but not always possible.
The stool on wheels is a particular hit with the kids - now we need another to have races down the hallway...
3 Apr 2013
My Daughter's Trial - a compelling play by my friend Gulshanah
Rehearsals are now underway for My Daughter’s Trial, written by my friend, Gulshanah Choudhuri, an SEN Barrister and the mother of a daughter with Down's Syndrome.
The play, described as compelling and fast moving, features Parveen, an ambitious young Muslim barrister who faces her own trial when she must decide whether to section her mentally ill mother against her family’s wishes.
As Parveen juggles her professional and personal responsibilities, the action switches rapidly from courtroom battle to domestic turmoil, made even more complicated when her opponent in court turns out to be the love of her life.
Witness the actions of both the defendant and Parveen, and judge for yourself who is really on trial
The play is being staged in the atmospheric former Westminster County Court, hidden away in Covent Garden.
Parveen is played by
Goldy Notay. Goldy is best known for
playing the lead in Gurinder Chadha’s It’s
a Wonderful Afterlife, Basimah in Sex
and the City 2, and opposite Martin Clunes in the ITV series The Town. She recently starred in Beloved, Produced by Len Loach, which was the closing night film at
Cannes. She is a well-known face on TV from regular appearances in Holby City and Doctors
Capacity is limited so don’t leave it too late. Put it in your diary and book your tickets now.
Read More »
The play, described as compelling and fast moving, features Parveen, an ambitious young Muslim barrister who faces her own trial when she must decide whether to section her mentally ill mother against her family’s wishes.
As Parveen juggles her professional and personal responsibilities, the action switches rapidly from courtroom battle to domestic turmoil, made even more complicated when her opponent in court turns out to be the love of her life.
Witness the actions of both the defendant and Parveen, and judge for yourself who is really on trial
The play is being staged in the atmospheric former Westminster County Court, hidden away in Covent Garden.
Parveen is played by
Goldy Notay. Goldy is best known for
playing the lead in Gurinder Chadha’s It’s
a Wonderful Afterlife, Basimah in Sex
and the City 2, and opposite Martin Clunes in the ITV series The Town. She recently starred in Beloved, Produced by Len Loach, which was the closing night film at
Cannes. She is a well-known face on TV from regular appearances in Holby City and DoctorsCapacity is limited so don’t leave it too late. Put it in your diary and book your tickets now.
April 8-11, 15-18, 22-25 7.30pm
Brown’s Courtroom
Above Brown's Restaurant
82 St Martin’s Lane
London WC2N 4AG
Book tickets via
Soho Theatre Box Office 020 7478 0100
Or via www.sohotheatre.com
Gulshanah's website is at http://senbarristers.co.uk
Brown’s Courtroom
Above Brown's Restaurant
82 St Martin’s Lane
London WC2N 4AG
Book tickets via
Soho Theatre Box Office 020 7478 0100
Or via www.sohotheatre.com
Gulshanah's website is at http://senbarristers.co.uk
31 Mar 2013
17 Mar 2013
Raising awareness of Ehlers Danlos Syndrome - an under diagnosed rare condition
Lara Bloom, who runs the Ehlers Danlos Society charity, is making a documentary about EDS to help raise awareness of what is a rare but also an under-diagnosed condition.
Read More »
12 Mar 2013
28 Feb 2013
Rare Disease Day: Discovering the great work of small charities
We've just been to the Rare Disease Day event at gothic looking Royal Holloway University in Surrey.
One really surprising discovery was that after almost 20 years, the message that Folic Acid can prevent spina bifida is still not common knowledge among women planning a baby. This is, apparently, because the main campaign was around the time when I was having my babies who are now 15 and 13, but awareness has faded. Another fact is that it is now known that women need to be taking Folic Acid three months BEFORE they become pregnant for prevention - it's too late once the mother to be is already pregnant. The Shine charity is trying to change this lack of knowledge.
If you're looking for support for a rare disease, check out RareConnect, a multi-lingual forum that has more than 30 rare disease communities - maybe your condition is one of them. If not, why not start one?
Read More »
The boys were given the day off school and we headed out en famille, including Mr T (no, not that one).
We first took part in a discussion led by the Genes for Jeans/ Genetic Disorders charity about living with rare diseases such as neurofibromatosis and Huntingdon's Disease. There were a number of GCSE students there, including my boys, who were asked to ponder the question of whether they would undergo genetic testing if a positive result meant that they would discover that at the age of around 30, they would succumb to a devastating illness and early death.
Most decided they would rather not know, but that if they did they would try to live their life to the fullest. In fact statistics show that only 10% of those with a high genetic probability of Huntingdon's choose to be tested at age 18.
In the large picture gallery, rare disease charities had exhibition stands set up from Shine charity (Hydrocephalus/Spina Bifida), Tuberous Sclerosis, AKU, Myasthenia Gravis and Ehlers Danlos Syndrome among others and there were hands-on activities for learning about DNA and the genetics behind rare diseases.
We were especially interested in the EDS stand as Youngest is affected by this and I have also just been referred to the same specialist.
I had a really interesting discussion with the team from the Alkaptonuria Society and the important research work that's being carried out to try to find a cure. The condition can cause severe pain, osteoarthritis and heart disease.
One really surprising discovery was that after almost 20 years, the message that Folic Acid can prevent spina bifida is still not common knowledge among women planning a baby. This is, apparently, because the main campaign was around the time when I was having my babies who are now 15 and 13, but awareness has faded. Another fact is that it is now known that women need to be taking Folic Acid three months BEFORE they become pregnant for prevention - it's too late once the mother to be is already pregnant. The Shine charity is trying to change this lack of knowledge.
The thing about rare diseases is that millions of people have them but there are many, many different conditions and the vast majority suffer from lack of investment in research and medicines.
- 1 in 17 people will be affected by a rare disease at some point in their life.
- This amounts to approximately 3.5 million people in the UK.
- 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. There are over 6,000 recognised rare diseases.
There are a number of people in my life who have various kinds of rare diseases. The youngest, my nephew Dylan, is just 4 years old.
There are also many wonderful people working to help people affected by rare diseases in the form of volunteers, charity workers for specific rare conditions, researchers, scientists and people working for rare disease organisations such as EURORDIS, Rare Disease UK and NORD.
There is much work being done and it's to be hoped that world-wide events like Rare Disease Day will help to raise awareness and bring in investment to help improve or save the lives of those affected by little-known conditions.
If you're looking for support for a rare disease, check out RareConnect, a multi-lingual forum that has more than 30 rare disease communities - maybe your condition is one of them. If not, why not start one?
29 Jan 2013
Chemo for little Dylan's Nephrotic Syndrome
I wrote a while ago about my nephew, Dylan and his fight against Nephrotic Syndrome, a rare disease that affects his kidneys.
A BRAVE little boy battling a rare disease that causes his immune system to attack his kidneys is preparing to have chemotherapy.
Four-year-old Dylan Davies-Abbott, who was diagnosed with Nephrotic Syndrome a year ago, will undergo the eight-week treatment from February 4 with the aim of limiting the number of attacks he has.
His mum Sam admitted it was a “difficult decision” to go down the chemotherapy route as there is a small risk of Dylan becoming infertile. But having had several relapses at the end of last year, Dylan has now been classified as “steroid dependent”, which is the medication used to treat his condition. Steroid use can have damaging long-term effects on his bones and growth, and could also result in him becoming vitamin B deficient.
Nephrotic Syndrome, which is most common among boys aged two to six, affects about 10,000 people in the UK. When the immune system attacks the kidneys, it damages them and causes large amounts of protein to go from the blood into the urine.
When this happens, it can cause Dylan to become swollen and very tired, as well as causing scarring to his kidneys which could one day lead to him requiring a transplant.
Sam, from Holywell, North Wales, said: “The ideal scenario with the chemotherapy is that we would get a long period of remission without medication and to get Dylan off the steroids.
“When he has a relapse he does respond to the steroids within five or six days. “We’re grateful that it works but it’s not a long term solution.”
She added: “We don’t know if the chemotherapy will work but it’s a better option as it’s a short-term intervention.
“It’s been a difficult decision. Potentially it could have big effects on him.
“There is a very small risk of him becoming infertile.
“I know the risk is small but it’s still a risk. It’s impossible to say if the chemotherapy will work, it’s very much trial and error.”
Sam had taken Dylan to hospital in January last year with a suspected sickness bug – what she wasn't expecting to hear was that her son actually had a rare illness and that he may need a kidney transplant in the future.
“They don’t know what causes it and we don’t know why it was triggered in Dylan because he had no underlying health problems”, she said. “It came as quite a shock to us.
“The worst case scenario is that he could at some point need a kidney transplant but that wouldn’t cure him long term because the problem isn’t with his kidneys.
“We hope he might grow out of it in late adolescence – maybe 15 years or so.”
Since Dylan was diagnosed Sam and her husband Ian have been fundraising for the Nephrotic Syndrome Trust who carry out research into the illness.
On March 17, Ian will run the Liverpool Half Marathon to raise awareness of his son’s condition. Sam said: “When we found out we didn’t know any one who had heard of it.”
For more information visit nstrust.co.uk/pages/home.
Read More »
Next week, Dylan, who is four, is starting chemo.
His mum, Sam, will be giving an update about NS, Dylan's treatment and how it affects his education on my Special Needs Jungle site as part of a series of articles in the run up to Rare Disease Day.
In the meanwhile, this is an article in the Flintshire Chronicle about him.
***
Four-year-old Dylan Davies-Abbott, who was diagnosed with Nephrotic Syndrome a year ago, will undergo the eight-week treatment from February 4 with the aim of limiting the number of attacks he has.
His mum Sam admitted it was a “difficult decision” to go down the chemotherapy route as there is a small risk of Dylan becoming infertile. But having had several relapses at the end of last year, Dylan has now been classified as “steroid dependent”, which is the medication used to treat his condition. Steroid use can have damaging long-term effects on his bones and growth, and could also result in him becoming vitamin B deficient.
Nephrotic Syndrome, which is most common among boys aged two to six, affects about 10,000 people in the UK. When the immune system attacks the kidneys, it damages them and causes large amounts of protein to go from the blood into the urine.
When this happens, it can cause Dylan to become swollen and very tired, as well as causing scarring to his kidneys which could one day lead to him requiring a transplant.
Sam, from Holywell, North Wales, said: “The ideal scenario with the chemotherapy is that we would get a long period of remission without medication and to get Dylan off the steroids.
“When he has a relapse he does respond to the steroids within five or six days. “We’re grateful that it works but it’s not a long term solution.”
She added: “We don’t know if the chemotherapy will work but it’s a better option as it’s a short-term intervention.
“It’s been a difficult decision. Potentially it could have big effects on him.
“There is a very small risk of him becoming infertile.
“I know the risk is small but it’s still a risk. It’s impossible to say if the chemotherapy will work, it’s very much trial and error.”
Sam had taken Dylan to hospital in January last year with a suspected sickness bug – what she wasn't expecting to hear was that her son actually had a rare illness and that he may need a kidney transplant in the future.
“They don’t know what causes it and we don’t know why it was triggered in Dylan because he had no underlying health problems”, she said. “It came as quite a shock to us.
“The worst case scenario is that he could at some point need a kidney transplant but that wouldn’t cure him long term because the problem isn’t with his kidneys.
“We hope he might grow out of it in late adolescence – maybe 15 years or so.”
Since Dylan was diagnosed Sam and her husband Ian have been fundraising for the Nephrotic Syndrome Trust who carry out research into the illness.
On March 17, Ian will run the Liverpool Half Marathon to raise awareness of his son’s condition. Sam said: “When we found out we didn’t know any one who had heard of it.”
For more information visit nstrust.co.uk/pages/home.
16 Jan 2013
6 Jan 2013
30 Dec 2012
#SilentSunday - Winter Walking
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| Winter Walking |
16 Oct 2012
The tumble dryer that felled "superwoman"
It was the tumble dryer that did it.
You know when you're going flat out and then something unexpected happens that suddenly overwhelms you? Well for me it was the tumble dryer packing up. On a weekend. When Son1 was away on a very dirty survival weekend in the Lake District.
You could say, well at least it wasn't the washing machine, and you would be right, but still, when you live with two boys and a husband who exercises, a lot, it's still pretty bad. Youngest also likes his clothes soft and cuddly, not stiff and line dried and when you have Autism, this matters a great deal.
You wouldn't think something as every day as a broken tumble drier could spark such a wave of knock-down exhaustion, but it did.
I've been working pretty much flat out this year with my DysNet job, my Special Needs Jungle doing really well and being involved with the Surrey SEN pathfinder reform. I've been on business trips to Belgium and Sweden and met many new and wonderful people through my work and I've enjoyed it all. Well, most of it, anyway.
I have been energised, flying. I've even been described a few times, rather amusingly, as "Superwoman."
But I bet superwoman wouldn't have been defeated by a tumble dryer.
Superwoman wouldn't have wailed so loudly that her husband hurriedly offered to take the pile of wet laundry to dry at the launderette.
"We live in Farnham!" I cried in response. They don't have launderettes! When people in Farnham's tumble dryer breaks, they just get a new one!"
He quietly picked up the pile of damp washing and hung it up on airers in the conservatory, flicking it out to release the creases like an expert.
I skulked into my study, checked my email and listened to Joss Stone on Spotify asking "Tell me what we're gonna do now." Well quite.
Well, of course, what I'm going to do, once I've got over my mini melt-down, is ring D&G and book a service call. Though the local people can't come for a few more days.
Problem solved, you might think.
So why do I feel like I've suddenly been run over by a truck? Why is it that a tumble dryer breaking has prompted all the not so good things that have happened in recent weeks to play on my mind?
All of a sudden, exhaustion has knocked me down like a tidal wave. I take a nap and wake up feeling like I haven't been asleep at all. Waking up in the morning feels like it's the middle of the night.
Read More »
You know when you're going flat out and then something unexpected happens that suddenly overwhelms you? Well for me it was the tumble dryer packing up. On a weekend. When Son1 was away on a very dirty survival weekend in the Lake District.
You could say, well at least it wasn't the washing machine, and you would be right, but still, when you live with two boys and a husband who exercises, a lot, it's still pretty bad. Youngest also likes his clothes soft and cuddly, not stiff and line dried and when you have Autism, this matters a great deal.
You wouldn't think something as every day as a broken tumble drier could spark such a wave of knock-down exhaustion, but it did.I've been working pretty much flat out this year with my DysNet job, my Special Needs Jungle doing really well and being involved with the Surrey SEN pathfinder reform. I've been on business trips to Belgium and Sweden and met many new and wonderful people through my work and I've enjoyed it all. Well, most of it, anyway.
I have been energised, flying. I've even been described a few times, rather amusingly, as "Superwoman."
But I bet superwoman wouldn't have been defeated by a tumble dryer.
Superwoman wouldn't have wailed so loudly that her husband hurriedly offered to take the pile of wet laundry to dry at the launderette.
"We live in Farnham!" I cried in response. They don't have launderettes! When people in Farnham's tumble dryer breaks, they just get a new one!"
He quietly picked up the pile of damp washing and hung it up on airers in the conservatory, flicking it out to release the creases like an expert.
I skulked into my study, checked my email and listened to Joss Stone on Spotify asking "Tell me what we're gonna do now." Well quite.
Well, of course, what I'm going to do, once I've got over my mini melt-down, is ring D&G and book a service call. Though the local people can't come for a few more days.
Problem solved, you might think.
So why do I feel like I've suddenly been run over by a truck? Why is it that a tumble dryer breaking has prompted all the not so good things that have happened in recent weeks to play on my mind?
All of a sudden, exhaustion has knocked me down like a tidal wave. I take a nap and wake up feeling like I haven't been asleep at all. Waking up in the morning feels like it's the middle of the night.
There is a tightness in my chest and eating makes me feel sick. The incredible workload that I was managing well now seems like I'm at the foot of Everest with not a Sherpa in sight.
I'm old enough to know that, in the end, this too shall pass. Maybe with the help of a spa day or a day out, if at all possible.
But it just strikes me as funny that the final straw can be something that you least expect.
And just in case you're wondering, AEG, your A-rated vastly expensive Lavatherm 59800 condenser dryer with heat pump, sucks. Had it four years and it's broken three times already. Considering it cost £500, that's something approaching rubbish.
Just sayin'
But it just strikes me as funny that the final straw can be something that you least expect.
And just in case you're wondering, AEG, your A-rated vastly expensive Lavatherm 59800 condenser dryer with heat pump, sucks. Had it four years and it's broken three times already. Considering it cost £500, that's something approaching rubbish.
Just sayin'
25 Sept 2012
Online to real life - friendship made flesh
A couple of years ago, when I first published my books, I got involved in writers' groups. I 'met' some great people and among them, one writer whose books I would have read, whether or not we had connected online.
Libby Fischer Hellmann writes the kind of books I read - American, female, detective/police crime novels.
Read More »
Marcia Muller, Sara Paretsky, Linda Fairstein, Linda Barnes, Laura Lippman, Sue Grafton, Patricia Cornwell (until recently) and even JD Robb and Janet Evanovich, I've read and loved them all.
So, when I came across Libby and her character Georgia Davies, a former Chicago cop turned PI, I was thrilled.
Even better, she has a second protagonist in earlier books, Ellie Foreman, who reminds me so much of Libby herself. Libby is a great writer and I loved her books and, as she's written quite a few, I still have more to come.
Her latest, A Bitter Veil, set in 70s Chicago and revolutionary Iran, is a departure, but the writing is just as stellar and the story engrossing.
Anyway... last week, Libby came to visit as part of her solo trip around the UK. It was so wonderful having her to stay and we visited both Jane Austen's House and Waverley Abbey, neither of which I've been to before, even though they're on my doorstep.
In Libby, I have discovered an older sister who has wisdom, common sense and a side of wickedness that I love. I have always said that when I grow up I want to be Libby Hellmann, and after this visit, I think that even more.
This evening, as I was cooking dinner, I was wishing she was still here. She helped us celebrate our 15th anniversary and as I stepped into the kitchen on the evening of our anniversary party last Saturday and saw her expertly packing away leftover food, she was not just my sister but my (far too young to really be-) mother too.
Here's a few pics from her visit:
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| Libby & Jane Austen - I prefer Libby |
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| At Waverley Abbey. Leo is on an invisible lead.. |
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| Celebrating |
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