Balanced Belly Book Club: The Good Gut Guide by Liz Earle

I think you already know that I like a book review and as someone who is increasingly suffering with gut problems, this piece by Jen nutritional therapist at A Balanced Belly blog jumped out at me.  Might be heading off in search of a new book this afternoon…..

“This month’s balanced belly book club review is….. The Good Gut Guide by Liz Earle.

the good gut guide

Image from Amazon

What is it?

The Good Gut Guide is written by skincare guru Liz Earle (think that seems a bit random? Well it’s not really. I’ve blogged before about how our skin is very much connected to our gut) It really is a guide in every sense of the word- it offers sections on the science of our gut microbiome, practical how-to guides (with everything from a probiotic face mask to fermenting foods for dummies), a week by week programme and, of course, lots of recipes.

What I Liked About

I apologise for the gushing and can assure you that not every book review will be littered with over the top praise, but this is truly one of the best books I’ve read about gut health……”

For the full review please follow link: The Balanced Belly Book Club – review The Good Gut Guide

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The Princess and the Pea – from little Princess Rubie at My Stripy Life Blog

I have to share this post with you from My Stripy Life blog – a fellow EDS zebra.  Except part of this post has been written by 7 year old Rubie and incorporates a review of her favourite story.  Enjoy……

The story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife.  One stormy night a young woman drenched with rain seeks shelter in the prince’s castle. She claims to be a princess, so the prince’s mother decides to test their unexpected guest by placing a pea in the bed she is offered for the night.  She covers the bed in 20 mattresses and 20 feather-beds. In the morning she asks the princess how she slept.  ……..

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Picture from My Stripy Life

For decades I have related to the story of the Princess and the Pea.  As a child I was always tossing and turning in bed at night uncomfortable…………Now, I have my own princess who feels every bump in her bed and is finding parallels with this story and her own life.  When she had to complete a book review for homework this week on her favourite traditional tale she immediately chose this story……”

To read Rubie’s review please follow this link:  Rubie’s review of The Princess and the Pea

Monday Magic – Inspiring Blogs for You

It has been a sun drenched week with temperatures reaching 35 degrees in London – too hot for us POTSIEs!!  I have been absent from the blog and social twitter as the heat has given me some pretty grotty days, but thank goodness for midodrine – this has kept the faints under control.  Up to now I have had to get my midodrine prescribed monthly by my cardiologist and then dispensed by the hospital pharmacy, a hassle for everyone, but this month my GP has been allowed to prescribe. Hurray!!Monday Magic

Something that the weather has played havoc with has been my icing!!  I planned to make a cake for our friends’ Silver wedding anniversary and it was all going well until Wednesday night when I came to ice with fondant.  Who has ever tried to ice a 24 ounce, 12 inch heart shaped cake in 34 degrees humid heat??  Three of us were doing it – I can’t roll it out any more due to dodgy wrists/hands/shoulders! – and if we tried to lift the wretched stuff once, we did it at least five times and each attempt the sheet of icing split.  Eventually the cake went back in the fridge, the fondant into its tub and me in front of the TV with a glass (large) of wine.  Panic not, yours truly was up bright and very early the next morning and icing the cake at 7 am before a rheumatology appointment at 9 am.  Very pleased with the finished product and I even made it to the party on Saturday for a couple of hours (in the wheelchair with a dislocated shoulder in a sling – colour co ordinated with my dress naturally) where the A level student got his sister tipsy on cocktails. Enough said!!

I’m rather later in the day getting some inspiring blog published, so I suggest that it could be time to sit down with a large glass of vino or a cold beer or even a Pimms, and enjoy some great posts & a vlog.  Think I need to take a close look at the sunburn one and I am intrigued by the Spoonie pin up……

https://confessionsofafibromama.wordpress.com/2017/06/26/a-tricky-parenting-secret/

http://hope-health-healing.net/blog/2017/6/19/how-can-i-prevent-sunburn-naturally/

http://chronicallywhole.com/dear-doctors-may-always-use-powers-good/

https://chronicallystrong.com/7-lessons-orange-is-the-new-black-teaches-society-about-mental-illness/

Image Source: http://bit.ly/2sf6PV7

Image Source: http://bit.ly/2sf6PV7 – Orange is the New Black – from Chronically Strong

https://thezebramom.wordpress.com/2017/06/19/autonomic-testing-what-you-need-to-know/

https://theinvisiblef.com/2017/06/20/swim-classes-lessons-confronting-anxiety-self-doubt-whole-shebang/

https://tipsforme.wordpress.com/2017/06/22/spoonie-pinup/

https://thedisableddivablog.com/2017/06/21/my-body-failed-to-meet-my-expectations/

http://livewithcfs.blogspot.co.uk/2017/06/weekly-inspiration-restorative-power-of.html

 

Hope you enjoy these and take time to leave a “like” or comment – and share some great bloggers’ work.

Claire x

 

 

 

Monday Magic – Inspiring Blogs for You!

The start of a new week and I wake up to yet another terrorist attack in London – following a dreadful week for our capital with the fire in Grenfell tower, west London.  My thoughts go out to all involved.

Monday Magic

Duncan has been away this week with 60 year 6 children, aged 10 & 11, on the annual French trip to Paris.  I gather it was very hot and very busy.  This has meant that the adult kids have had to be my carers – not sure who it is worse for.  As anyone suffering with dysautonomia – malfunctioning of the autonomic nervous system – knows, this heat plays havoc with us.  My breathing has been worse and the pooling of blood has turned my hands and feet to a delightful shade of blue/red every day.  So yours truly managed a truly spectacular faint in the shower cubicle, from which I had to extracted by the student engineer and lovely girl.  Not really what any mum wants her 21 year old son to have to do!!  The bruises are stunning – Ehlers Danlos skin combined with steroids gives great results for all injuries!

Today is my birthday…we won’t count the years….and I can’t quite believe that another year has passed.  I would write more but I am being called to get ready – my lovely parents are taking Duncan and me out for lunch.  So in my usual Monday fashion, I invite you to make a cuppa, kick off your shoes, sit back and enjoy some more inspiring blog posts from my friends over at Chronic Illness Bloggers!

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https://mymigrainelife.wordpress.com/2017/06/08/mile-for-migraine-charity-walkrun-2017/

http://blog.mighty-well.com/spoonie-community-self-love

https://letsfeelbetter.com/anger-management-garbage-people-that-time-i-went-ballistic-on-tech-support-my-bad/

http://gettingclosertomyself.blogspot.co.uk/2017/06/the-storm-after-years-of-calm.html?m=1

https://themartianprincesschronicles.com/2017/06/16/someone-snatched-my-security-blanket-chronic-illness-and-motivational-tools/

http://invisiblyme.com/2017/06/17/mini-me-update/

https://wheelchairvista.life/2017/06/10/5-more-ways-to-survive-being-disabled/

http://thethyroiddamsel.com/autoimmune-diseases/sickness-health/

http://lifesapolyp.blogspot.co.uk/2017/06/a-caregiving-father.html

http://www.travelbreatherepeat.com/lam-community-support/

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Please remember to like, comment and share!

Claire x

 

 

The Grenfell tower fire: prophetic blog post from 2016 “KCTMO – Playing with fire!”

This is something very different for my blog, but as I sit here and watch the Grenfell tower block burning on television this morning, it seems important that this awful prophetic blog post is shared. I can’t comment on claims made in this post – the opinions expressed are not mine.

Grenfell Action Group

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It is a truly terrifying thought but the Grenfell Action Group firmly believe that only a catastrophic event will expose the ineptitude and incompetence of our landlord, the  KCTMO, and bring an end to the dangerous living conditions and neglect of health and safety legislation that they inflict upon their tenants and leaseholders. We believe that the KCTMO are an evil, unprincipled, mini-mafia who have no business to be charged with the responsibility of  looking after the every day management of large scale social housing estates and that their sordid collusion with the RBKC Council is a recipe for a future major disaster.

Unfortunately, the Grenfell Action Group have reached the conclusion that only an incident that results in serious loss of life of KCTMO residents will allow the external scrutiny to occur that will shine a light on the practices that characterise the malign governance of this non-functioning organisation…

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Monday Magic – Inspiring Blogs for You

Monday MagicAnother week and here in the UK we are electioned out!  Well at least I am!  Between the student engineer, now home, and the politics student-in-waiting and the younger sister, mealtimes in our house have proven lively and very noisy as political debates have raged.  Forget the House of Commons, just come to our house!

Of course the student-in-waiting has started his A levels this week and I am probably more stressed than he is.  The whole mum thing, where there is nothing that I can do yet I still worry.  We are keeping everything crossed that an EDS migraine doesn’t rear its ugly head on an exam day as he has had so many recently.  The pizotifen mad him feel worse, so he is now taking propanolol to try to stop the migraines before they start, if you get my drift.  He is pretty good at internalizing things though as believe me you would’t know that there were any exams happening!!

I have had more hospital trips and tests this week which I will tell you about in another post, but mum and I made friends with several delightful elderly gents in haematology outpatients, and the nurse became mum’s friend for life when she declared her to look at least 10 years younger than she is.  One thing we zebras can be grateful to Ehlers Danlos for – great skin!!

I have found another 10 great new blog posts for you – a couple from some friends who have featured before, others who will become new favourites with you I hope! There are a couple of great posts here with the summer holidays in mind – playdough and Disneyland, what more could you want??  So grab a cuppa, sit down and enjoy some fantastic reads……

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Image from ChronicSex.org

http://theseatedview.blogspot.co.uk/2017/06/its-all-in-your-head-fighting-for.html

https://lightscameracrohns.com/2017/06/05/relationships-caretakers-and-crohns-a-candid-interview-with-my-husband/

https://findingmymiracle.com/2017/06/05/bigger-than-my-something/

http://www.prohealth.com/library/showarticle.cfm?libid=30398

http://patienceandpajamas.com/disney-travels-part-one/

http://www.chronicsex.org/2017/06/7-ways-feel-sexy/#main

https://reclaiminghope.blog/2017/06/08/maintaining-mobility-with-fibromyalgia/

https://beinglydia.com/2017/06/11/the-ache-of-triumph/

https://medicalmysterymusings.wordpress.com/2017/06/01/meet-the-admin-team/

http://strengthandsunshine.com/how-to-make-natural-homemade-gluten-free-playdoh/

 

……..please comment, share and make the blogger’s day!

Claire x

Disney

Image from Google

The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!

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Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

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I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]

My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.

Disjointed

Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

Ready for Sleep

Sleep is difficult with chronic pain – some tips here from ItPainsMe blog

Read My Mind

I love my bed, and I love putting on my jammies, shortly after the dogs have their after dinner walk. So yes, bedtime starts right after dinner!!  Sleep is difficult when you’re in pain, but there are many things I’ve learned that help prepare me for sleep.  Falling asleep, staying asleep, waking too early are all problems. Trying to get comfortable is the hardest thing to do.

  1. Comfortable sleep wear that hits the just right temperature, not too hot or cold. Pjs that allow lots of twisting and turning! I like inexpensive tops and pants from Old Navy, they are made of  thin fabric.
  2. Bed:I use a lambswool mattress topper that is supposed to help cushion the pressure points and relieve discomfort. It was pricey but really nice. I swear I sleep better on clean sheets, too. I have spent hundreds of dollars trying almost every pillow type there is…

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Monday Magic – Inspiring Blogs for You

Monday Magic

The children of the UK have returned to school after half term, which should have been a week of fun and rest (and revision for the older ones!) – sadly it ended with another devastating terrorist attack which has seen more innocent lives destroyed, and yet more fighting for life across our capital’s major hospitals.

As a professional patient, and in a previous life a medical professional, I have been both a patient and worked in some of these hospitals – I was born in south London and lived in central London during my early nursing days.  My most recent in patient stays have been in Guys hospital, situated next to London bridge the site of the attack on Saturday night.  Being able to picture the streets where an atrocity has happened makes it so much more real – I am sure Mancunians will understand this too.  We spent a day in London last week whilst our 18 and 14 year old went to see the Harry Potter show.  Security was tight at the theatre, as you would expect, but it was lovely to see so many families out and enjoying a beautiful day on the South Bank – it is easy to say that we won’t allow terrorists to stop our normal life, but to actually make sure that we carry on is not always so easy.

Last night the young American singer, Ariana Grande, hosted a benefits concert in Manchester, watched by approx 14 million on the television.  I knew very little about this young lady, but I take my hat off to her for what she and her management team have achieved in the last week.  She was criticised in some parts of the press for “running away”, and then for arranging a benefit too quickly – I think that whatever she did she would be damned by someone.  But having been in an awful situation along with her fans, she used her fame and contacts to do something good…..there were lots of tears in Old Trafford last night, but lots of laughter, fun and inspiration too.

Speaking of inspiration, I am still finding fantastic different blogs from the Chronic Illness Bloggers community to share with you.  If you have followed this regular feature, you know the drill….make yourself a cuppa, settle down and enjoy some great posts from some inspirational people!

https://itpainsmeblog.wordpress.com/2017/05/21/using-distraction-to-heal/

https://medicallyodd.com/blogbreathemia/

https://primaryimmunepatientsunited.com/orphans-of-the-ahca/

https://charlottedebs.com/2017/06/02/footwear-friday-week-1/

http://www.nataliemabbott.com/choose-kind-kinda/

https://treasuresonthesand.com/2017/05/29/stress-a-chronic-pain-warriors-worst-enemy/

https://arkaysthoughts.com/2017/05/23/different-weird-alien/

http://oneticktobesick.blogspot.co.uk/2017/05/lyme-disease-awareness-month-check.html

http://www.whentaniatalks.com/browhaus-classic-brow-lead-review/

http://www.chronicandblessed.com/ditching-sugar/

Enjoy and please like or comment on the posts!

Claire x

 

A Fatal Blow over Disabled Parking

Last night we watched a repeat of the Channel 4 documentary “One Killer Punch“, which examined the phenomenon of a one punch kill.  It was very emotive and as the mother of two young adult males, I feel devastated for the four families torn apart in the first and last cases shown.  Difficult to watch and I am sure extremely hard to make, there have been calls for it to be shown in all secondary schools. Everyone will have a different and personal opinion whilst watching these young men and the families speak on film and this is in no way meant to belittle a heartbreaking subject.

Rather I want to highlight the other case which all hinged upon the right to use a disabled parking bay.  I know that this is another emotive subject that those of us on “spoonie” social media will see discussed time and time again.  How many times is someone judged from the way they look as to whether they are worthy of that bay?

imageIn this heartbreaking incident, a man died because another judged that he was not in need of this parking space in a supermarket car park.  The attacker saw a gentleman walking out to place some goods in his car and, because he wanted the spot for himself and his disabled wife and he deemed the other unworthy of parking there, he got out of his car and hit the gentleman.  He didn’t stop to notice the blue badge sitting on the dashboard, or the name on it that showed it belonged to the gent’s wife.  He didn’t wait to hear that the lady was still in the store and suffers with rheumatoid arthritis.  Instead with one punch he floored a stranger and then calmly got back into his vehicle when he “heard his head crack on the ground” and drove home.

Several hours later a distraught family had to make the decision to turn off life support and another family suffers as a member is sent to jail.  What a senseless waste of a life.

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I know that there are some people out there who use relatives blue badges/disabled permits illegally, but I would like to think that they are in the minority.  In the UK being issued with a blue badge is no easy task now, and I’m sure that it is equally difficult elsewhere. I would  like to say to everyone please don’t be too quick to judge someone who doesn’t look “disabled” using a disabled parking bay – we are all different and our needs can vary from minute to minute.  Believe me, I would rather be skipping the length of the high street than needing to use a stick and wheelchair to enable me to park closer to that shop!

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