Warning…things not to say! Great blog piece.
#Depression – it can happen to anyone!

I want to share a link to a blog post from a very talented young man who has just announced his departure from progressive rock band The Enid. Please don’t switch off because Prog Rock isn’t your thing – it isn’t really mine either, but my husband has followed The Enid for years and so also the career of Joe Payne since he became their lead singer 5 years ago. His talent is undeniable – his vocals would work on any musical theatre stage let alone a rock band.
My reason for sharing is that Joe has written a very candid post describing how life overtook him and before he really knew it, he had been taken over by anxiety and depression and breakdown. I have described before how my husband suffered a similar mental health breakdown a couple of years ago, after a period of extreme pressure from both work and several life experiences. There is still a stigma attached to any health issues that are related to the psyche rather than the physical – but this should remind us that if a young, talented and successful young man can succumb to depression, it really can effect anyone. Let’s all continue to raise awareness of the importance of mental health care – thank you Joe for sharing and very best wishes for your future.

Noodle Trails – a book review
Noodle Trails by Eileen Kay A Book Review

I was fortunate enough to receive a copy of Noodle Trails from The Book Club on facebook in exchange for a fair and honest review – all opinions are my own and not sponsored.
Eileen sets off for her regular annual travels with Thailand firmly in her sights, only this year the circumstances feel different. In the past she has visited foreign parts under her business guise of Eileen’s Imports indulging in her passion to work with small producers of Fair Trade goods. These trips took her to Nepal, India, Cambodia, Vietnam, Africa and always her favourite, Thailand. However this trip came as a long term relationship was ended suddenly and out of the blue by her partner, and also as Eileen was having to accept that her once thriving business was no longer profitable. The change in the economy meant that the goods that she imported from small groups of, often, women working on the poverty line, were no longer in demand from the struggling shops & traders of the UK. But the trip has already been booked, and maybe it will provide a time of both grieving and healing for these two great losses in her life, before she can move on to a new life in Scotland.
As a blogger, I was keen to read this journal and experience blog posts brought together in a book. The disclaimer at the beginning does state that whilst the book is based upon real events, many have been dramatized and some is fiction. I have never been to Thailand, or in fact any of the countries that Eileen describes, but she transported me there with wonderful descriptions of the scenery, the people and the infrastructure. But my favourite descriptions were of the food! Every place that she stayed in was rated by the local food – not the food served up to the tourists, but that served in a local lady’s front room or café where the residents would eat. The aromas and tastes conjured up by Eileen’s writing made me salivate for noodles and ginger and chilli!
I learnt so much about Fair Trade – and Eileen’s guilt at letting down her contacts in villages in the middle of nowhere when she was unable to place an order this year. Small orders from western businesses could keep a whole village in work and food for months at a time. But I also laughed out loud at the descriptions of the family from whom she rented her final bungalow – the mixture of Italians and Thais was lovely, and I really hope that these lovely people were real and not fictional! I enjoyed this so much that I have found Eileen’s blog and her facebook page (www.facebook.com/Noodle-Trails-Eileen-Kay) and continue to follow her as she writes another book, learns Thai and I believe continues to wander Thailand.
I rate this book 4 stars.
#Book Review – “Brick” by Conrad Jones
Book review of the new novel by Conrad Jones (also posted on Book page)
“BRICK”
I was fortunate enough to be given a copy of Brick through The Book Club on facebook in exchange for an honest and unbiased review. All opinions are my own.
The murky underworld of gangland Liverpool is the setting for this gritty, fast paced thriller. With a prologue that leaves us with no illusions about the darker, violent sides of the story that are to come, the different threads and characters are introduced quickly. From the thugs of the prologue & burnt corpses of the first chapter, to a 14 year old boy and his family, to the new Detective Inspector with the police department, each character has their individual tale to bring, but these all feed one larger tangled web.
14 year old Bryn is the teenager who, out walking his dog one day, happens to say the wrong thing to the wrong person and finds himself the victim of an unprovoked attack. But this leads to a death, and the investigating police squad soon find that the teenager and his family are now unwittingly on the radar of a dangerous gangland criminal wanting vengeance. Stolen drugs, misplaced loyalties and the lengths that these gangs will go to, in order to protect their turf and their stock, make this a dangerous world for an ordinary family to find themselves in. Even DI Braddick who is investigating both the case of young Bryn and the case of the charred corpses, has some personal reason from his time in London to want to catch the Russians at the top of the chain. His investigations converge with an ongoing drugs squad investigation, and there also appears to be a mole within the police team. How else is the gang boss managing to find out the confidential whereabouts of witnesses & stay one step ahead? Even Bryn’s brother and the expensive lawyer that he hires appear to have something to hide.
This is not a novel for the faint hearted or squeamish as Conrad Jones paints a very vivid picture of the violence inflicted and the cheapness of life in the drugs underworld. This extends to the psychopathic tendencies of certain characters who are depicted as lacking in any empathy or morals, and unable to distinguish an innocent family for the sake of revenge & warped loyalties. I appreciated the way in which the police officers were depicted – they were not the usual upstanding pillars of the community who were whiter than white, but rather were humans with a range of personalities & emotions that they each brought to the job in hand. There were parts of the book that made me want to shout at the characters or hide behind my own hands as I couldn’t bare what might be coming next – how could Bryn’s family possibly think this action might be a good move, or why were the police not investigating that? For me this is great writing! I was on the edge of my seat wanting to know what would happen next and yet almost didn’t want to know, as things couldn’t possibly work out “happily ever after” – Conrad Jones has not written a fairy tale but rather about real life.
I would love to see a follow up to this as the characters of several of the police officers have developed sufficiently to move into another investigation, and there are loose ends from this plot that could be investigated in a sequel – no spoilers! In my opinion a gritty page turner that I could not put down – this gets 5 stars from me. Please Mr Jones, bring DI Braddick back for more!
Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today
I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand. At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets. Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins! See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!

Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.
“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”
See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today
NHS trials for cannabis vape pens in chronic pain
I’ve just read this piece on Vice.com that will interest all UK chronic pain spoonies! The NHS is trialling a cannabis based vape pen manufactured by MediPen……the journalist who tried it may not have chronic pain and may have enjoyed blowing vapour over his colleague, but the fact that the NHS is doing trials will hopefully be able to give some credence to the benefits of this CBD device. In case you aren’t sure – CBD doesn’t have the psychoactive compounds normally associated with “weed”!
The full article can be found here:
http://www.vice.com/en_uk/read/medipen-trialled-in-nhs-vgtrn

#EhlersDanlos radio drama “Tinsel Girl & the Big Reunion” Part 5
Welcome to the final installment of this BBC Radio play starring EDS UK patron Cherylee Houston.

Cardiology, POTS & Some Enchanted Entertainment
This last week has been a challenge, as I’ve really tried to carry on as a normal mum during the school holidays – and have used far too many spoons. So much for pacing myself. Those of you who follow my facebook page will already know that I went for afternoon tea with my mum and some friends at the very posh Cannizaro Park, Wimbledon. We were c
elebrating the 80th birthday of a family friend and I was delighted to be able to enjoy the afternoon – and to be able to wear a dress that I haven’t been able to get in to for a while.
So to those all too frequent swoony moments (no hunks involved sadly) and one story that
I put on facebook. The weather has been beautiful, but has left me with massive dizzy spells and faints – I even managed a fantastic one during a short dog
walk the other day! I knew I felt rough, so Duncan called home for a teenager to come and help get me along the road. By the time Olly came wandering along I was just coming round on the pavement….what do you think he did? Straight to the dog to check he was ok!! Forget the blasted dog, what about your mother sprawled on the pavement?? Dunc says I’m not allowed out again…
This week has included a hospital trip to see a new consultant in a different speciality – cardiology. The neurologist had recommended that I be seen as she felt, along with me, that the faints are not epilepsy related but probably a dysautonomia condition. It probably wasn’t a bad thing that it was a warm day and as I wasn’t seen until late afternoon, I was feeling pretty rough. I was lightheaded and massively fatigued. Twelve lead ECG first with a new cardiographer and then the usual wait in a corridor. My blood pressure was taken on a dynamap(always think a proper sphyg better) in the corridor and, not surprisingly, was elevated – well for me anyway, as my BP is normally on the low side. The cardiologist was great. He seemed to have a sound understanding of Ehlers Danlos, wanted to know about childhood issues related to it, when & where I diagnosed (University College Hospital, London) and what heart investigations I had already had…..answer: none since childhood. He seemed slightly surprised, but went through some of the common issues of leaky valves, postural issues, thyroid levels, palpitations and then took a lying an
d standing BP. Whilst there was no significant difference with this (and I thought he nay think I’m making it up), he could see that I couldn’t stand up straight – it feels like I’m being pushed backwards, although I’m told I fall forwards. Weird! Anyway, he believes me enough that he has ordered a tilt table test (exactly as it sounds, but the patient is left lying flat for considerably longer than an outpatients lying/standing BP and injected with nitrates etc to observe reaction when tilted to angles which will induce symptoms. Can’t wait!), bloods and a 5 day heart trace. He mentioned postural orthostotic tachycardia syndrome (POTS) and that postural circulatory issues are a symptom of EDS – which I knew, but had been concerned that he might not recognise! More news as it unfolds.
The light entertainment has been enjoyable but tiring. I have been writing this post for days now, but the fatigue and brain fog have taken over! Duncan had bought tickets for my mum and I to visit Cadogan Hall in London for the concert “An Enchanted Evening” – with Lesley Garrett, Ruthie Henshall, Gary Wilmott and Michael Xavier (I have copied my short review to the books & reviews page).
Public transport is a nightmare for me these days and I can’t manage the journey home after a show, so Duncan drove us up to Sloane Square where we managed to get the one and only disabled bay. This is where I feel so guilty as my husband came to dinner with us – really could have done with a wheelchair to get to the restaurant- and then took himself off for the couple of hours that we were being enchanted! Our darling eldest son was also in London for the evening and eventually called his father to invite him to join his group for drinks – because he felt guilty. Too late, student engineer – Dad was already headed down the Kings Road for the Curzon and a performance of the new David Brent film. Of course Duncan spent many years working on THAT Slough trading estate! Office fans will understand. Without him I just would not have been able to do this night out, and for that I am so grateful.
We had a lovely evening as a family with our dear friends Evi & David over the weekend too – they have been a major support to us in so many ways for all the family, and this is ongoing. Evi and I are just massively relieved that David & Duncan have found each other – kindred spirits in their love of Prog Rock music, meaning that we don’t have to listen any more (sorry, boys!). Then, bam!, it hit me. The fatigue, the pain – everywhere, the swelling of my feet and hands…..here comes another PJ day! I’m so sorry, I can’t come out today….
Some Enchanted Evening
I have added my review, that was published earlier in the week on our Intimate Audio facebbook page, to the review page at the top of the blog – or go straight to
http://www.facebook.com/IntimateAudioUK/


