tag:blogger.com,1999:blog-13767155687985890392026-05-19T15:05:03.484+01:00<center><b>Partial empty-nester of two sons who, like me, have Autism, Ehlers Danlos Syndrome and PoTS. Ever hopeful, but learning to live with a new reality. <br>This blog is for the slightly random stuff about life that doesn't fit on my fairly awesome, award-winning site, <a href="http://www.specialneedsjungle.com/">Special Needs Jungle</a></b></center>Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comBlogger167125tag:blogger.com,1999:blog-1376715568798589039.post-48848417661968344502019-08-20T19:47:00.002+01:002019-08-29T18:52:46.476+01:00

*In collaboration with S-Thetics, Beaconsfield. My husband is super-fit, works out most days with weights and the odd run. But although I have a chronic pain condition, I've recently done far&nbsp;more sit-ups in half an hour than he - or anyone - could ever dream of. Twenty-thousand to be precise. While I let that sink in, I’ll admit, it wasn’t under my own steam. I've used medical

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comMarlborough House, 45 Wycombe End, Beaconsfield HP9 1LZ, UK51.601449 -0.63900599999999486-2.3003734999999992 -83.2561935 90 81.9781815tag:blogger.com,1999:blog-1376715568798589039.post-13844269347744343112018-09-18T14:03:00.002+01:002019-08-29T18:52:33.166+01:00

The paradigm of the older 'invisible' woman has now been demolished, as business leaders, movie stars, musicians and supermodels are showing the world that vitality, relevance and beauty do not end at 40, 50 or above. We may tell ourselves that for people like Kylie (Minogue), Nicole, Sandra, Cindy, Sharon, Meryl, etc, looking good is part of their job. But whatever your lifestyle, time

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-58504633383591708232017-05-31T15:13:00.001+01:002017-05-31T17:26:51.003+01:00

As ever, My EDS Awareness month post sneaks in on the last day of May. It's been a big month, including a short, but amazing, trip to Barcelona to celebrate my and my husband's 50th birthdays (wtf?!). His was in April and mine is on 6th June (666... really rather fitting.) I wasn't sure how I would manage it, given the uncertainties of my Ehlers-Danlos syndrome, but we had booked assistance at

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-21845255669218052642017-01-17T22:40:00.001+00:002017-01-23T10:51:49.674+00:00

And so farewell Uncle Ray, farewell. Though we shared no blood, I knew you every day of my life that I can remember, and then some. You grew up next door to my mum, a friend from as soon as she could boss you about, though in a nice way, I'm sure 😉. You were mad about trains, a passion that stayed with you for life. You are in my earliest memories when, as a child, I would regularly pop

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-23198738916009356312016-12-31T19:01:00.002+00:002017-01-01T10:49:09.386+00:00

2016 may not have actually seen more celebrity deaths but the point is, it felt like it. Those who died were largely beloved figures. By New Year's Eve, I was wondering whose turn it was today, December had slapped us around so much. It's as if some malevolent force had picked off the people most likely to invoke public grief so a vast swathe of human emotional vibrations would resonate

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-52500389417799798362016-12-23T14:12:00.000+00:002016-12-23T14:14:13.449+00:00

I recently took part in a webinar aimed at helping rare disease patients who want to start a website for their patient group or small charity. Almost half of the world’s population is online, with the number of users growing daily. People are increasingly turning to the Internet to answer all of their questions – and this includes health. A 2013 study from the Pew Research Centre found that 72%

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-8192967860436739862016-11-15T15:56:00.001+00:002026-05-19T14:22:15.957+01:00

My youngest and I were both diagnosed with Ehlers Danlos syndrome by leading world expert in the condition, Professor Rodney Grahame (Update: Prof Grahame sadly passed away in early 2026). As well as being about as knowledgeable about the condition as it is possible to be, he's also kind, genial and still passionate about his field, despite being past the age at which many would be thinking of

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-87747423098028806572016-08-28T22:54:00.001+01:002017-01-07T16:28:37.128+00:00

A very small, yet enlightening medical commentary about Postural Orthostatic Tachycardia syndrome (PoTS) has recently popped up. PoTS is often -erroneously- put down to the result of deconditioning - i.e, not doing enough exercise. It's one of the things that people with the condition (including me) find most upsetting, the thought - sometimes spoken, more often just reflected in someone's

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-26785014974431282972016-06-11T18:05:00.000+01:002019-08-29T18:53:48.836+01:00

When you have a chronic illness, everyday life can seem like walking head-on into a hurricane. Putting one foot in front of the other, both physically and metaphorically, can seem like you are up against an unseen but powerful opposing force that, with one unwise step, will whip you off your feet into a maelstrom with an unknown ending. It's an uncertain and exhausting existence. That's why

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-85273795580191961812016-05-07T22:10:00.001+01:002016-12-28T09:22:09.120+00:00

Ah, it's Ehlers Danlos Awareness Month again, hurrah, zebras unite and shake your stripes! Gently, though, we don't want any awareness-raising injuries. EDS is a very enigmatic condition. It's rare, yet it might not be particularly rare. It's often in the papers with one case or another, yet no one has heard of it. It's a condition that makes collagen very stretchy, so it affects pretty much all

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-413331309531162662016-03-21T09:48:00.001+00:002017-01-07T16:17:17.779+00:00

Postural orthostatic Tachycardia syndrome or PoTS, is a complete bastard of a condition. It doesn't kill, thankfully, but it can quite often make you feel like you have no life in you. It can be a condition on its own or a comorbidity of another condition, such as mine, Ehlers Danlos syndrome.&nbsp;In its extreme, life-altering state, it's pretty rare and extremely misunderstood. The&nbsp;

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-39926733901823287552015-12-22T13:06:00.003+00:002017-01-07T16:23:03.730+00:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-2247761011712612212015-12-02T06:00:00.000+00:002019-08-29T18:54:50.050+01:00

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. *Scroll to the end to watch the

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comBeaconsfield, Beaconsfield, Buckinghamshire HP9 1LZ, UK51.6013422 -0.6397291000000677751.5964107 -0.64981410000006778 51.606273699999996 -0.62964410000006776tag:blogger.com,1999:blog-1376715568798589039.post-10723226013035054502015-11-10T06:30:00.000+00:002026-05-19T14:31:42.516+01:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-81156451370956783332015-09-09T06:30:00.000+01:002019-08-29T18:56:02.461+01:00

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 (

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-46611511077062639742015-08-20T07:57:00.000+01:002026-05-19T14:34:23.127+01:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-14710066083698662762015-05-27T17:42:00.001+01:002026-05-19T14:56:23.204+01:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-74600969949157173712015-05-09T22:03:00.003+01:002015-05-09T22:13:14.041+01:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-18127475946327974212015-05-05T12:53:00.000+01:002015-05-23T16:20:57.533+01:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-5497508006955985792015-03-20T18:44:00.000+00:002015-03-21T05:54:55.277+00:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-60804926372298285692015-01-27T11:21:00.001+00:002015-01-27T11:21:13.783+00:00

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

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-61443627794795029482014-11-02T06:30:00.000+00:002014-11-02T06:30:01.953+00:00

Monastery of Santa Maria Magdalena

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.com03660 Novelda, Alicante, Spain38.3841032 -0.7668469000000186538.3592097 -0.80718740000001865 38.408996699999996 -0.72650640000001865tag:blogger.com,1999:blog-1376715568798589039.post-74660088127059018312014-04-25T17:54:00.001+01:002014-04-25T18:02:00.975+01:00

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.

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-67958023896469914222014-03-19T19:22:00.000+00:002014-03-19T19:24:04.167+00:00

Watch the St Pancras Pancreas Cancer Action Flash Mob, then see these two beautiful women that it took from me and our families. Now please sign the petition to help cure this killer. My wonderful friend, Gulshanah, mother of two girls under 9, taken aged 44 in under six months from diagnosis, 2013 My mother, Maureen, taken at 66. Mother of 3 daughters, grandmother of two

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.comtag:blogger.com,1999:blog-1376715568798589039.post-61778218477527253932014-03-09T09:20:00.001+00:002017-01-07T16:34:31.112+00:00

Tania Tirraorohttp://www.blogger.com/profile/13007784308320361110noreply@blogger.com