29 Dec 2013

#SilentSunday Christmas Sparkle

credit Tania Tirraoro to re-use non-commercially
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21 Dec 2013

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

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

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

My Blogfest session Photo: Anna Gordon

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

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

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

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

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

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

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

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

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

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

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

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

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

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.  8 Love never fails.
c: NotAsAdvertised2013
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8 Dec 2013

#SilentSunday Rockstar in Training.

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1 Dec 2013

#SilentSunday: A Parenting Truth To Live By

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10 Nov 2013

Adventures at #Blogfest #Silent Sunday (Captions excepted)

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

Jenny & Renata

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

Closer view.. and another thing.

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

Jo Brand

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

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30 Jun 2013

Silent Sunday - Aspie Son2's Kilimanjaro Kit Check

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20 Jun 2013

SuperMoon - 23 June: Facts & Figs!

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2 Jun 2013

Silent Sunday with Ralph Waldo Emerson

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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 Son2 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 can still do some things easily: enjoy listening to music (what a life-saver Spotify is for me to find new things to listen to instead of getting stuck in a middle-aged rut. It's not overly social though as most of my friends aren't on it!).

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.

I have a few friends and even fewer family members who manage to be supportive without being pitying, which I would hate. Those few people (who should know who they are) manage it perfectly. I'm sure they feel bad for me, but they don't treat me as a sad case and they allow me to feel I still have something to give to them too. This is important to me.

My kids, well who knows? Son1 has made no allowances. He doesn't like change and so is ignoring that anything has changed.

Son2 also has EDS and POTS and, like me, is still going through testing/treatment. He 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.
He needs me to protect his interests and make sure he gets everything he needs. 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 The Hypermobility Association
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19 May 2013

Not so silent Sunday

Some tunes I like for a sunny Sunday...

Find this playlist

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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...

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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.
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
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31 Mar 2013

Silent Sunday: Buona Pasqua!

Buona Pasqua
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17 Mar 2013

Raising awareness of Ehlers Danlos Syndrome - an under diagnosed rare condition

Lara Bloom, who runs the Ehlers Danlos UK Support charity, is making a documentary about EDS to help raise awareness of what is a rare but also an under-diagnosed condition.
Ehlers Danlos is a connective tissue disorder that Son2 has. He regularly has dizzy spells, joint pains and extreme fatigue.

Here's a trailer for the documentary.

You can visit the charity's website here

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12 Mar 2013

It's just the way I roll...toilet roll

I'm with the over-the-top camp. What about you?

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28 Feb 2013

Rare Disease Day: Discovering the great work of small charities

Son1 snaps the rest of the Tirraoros
We've just been to the Rare Disease Day event at gothic looking Royal Holloway University in Surrey. 
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.

Son2 with Lara from EDS-UK
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 Son2 is affected by this and I have also just been referred to the same specialist. Son2 was delighted to get an EDS lapel badge and pose for a photo with Lara from Ehlers Danlos Support UK.

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?

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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.
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.


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.
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16 Jan 2013

Parenting teenagers

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6 Jan 2013

Ben Taylor - Listening

A beautiful voice. A beautiful soul.

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