credit Tania Tirraoro to re-use non-commercially...
This blog is for the slightly random stuff about life that doesn't fit on my fairly awesome, award-winning site, Special Needs Jungle
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.
My Blogfest session Photo:...
8 Dec 2013
1 Dec 2013
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
...
30 Jun 2013
20 Jun 2013
SuperMoon - 23 June: Facts & Figs!
The 23 June 2013 Supermoon infographic by mhars.
on Visually.
Source
...
2 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 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...
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...
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...
31 Mar 2013
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 he...
12 Mar 2013
It's just the way I roll...toilet roll
I'm with the over-the-top camp. What about you?
Over or Under: The Great Toilet Paper Debate infographic by bobbybernethy.
...
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...
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...
16 Jan 2013
6 Jan 2013
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