Just Another Day – with EDS & POTS

 

Just Another Day pin

 

The world feels off kilter

I’m spinning…..round and round

Every time I lift my head

The snow  descends, engulfs me

At times it overwhelms me

And then, bang, down I fall.

 

Lucy EDS 1

 

Falling, falling, twisting down

How long it takes to reach the ground

Slow motion into blackness

Nothingness

Painless

Floating.

 

Pain, pain, pain

Why am I on the ground?

A twist here and a bend there

Limbs entangled, joints at angles

Unnatural, except for me

Stretch and snap is the norm.

 

Lucy EDS 2

Salt, water; water, salt

Compression to limbs.

Like an autumn leaf

I fall and break

My body fragile, unstable

Just another day with EDS and POTS.

POTS & Me

 

 

 

 

Unforeseen – Life’s Curve Balls – coming fast and furious

It has been one of those weeks where nothing has quite turned out as we thought it would – the culmination of some tricky events that have escalated over the summer.  I can’t write about them yet – they aren’t just mine to tell.  But the impact on the family is great and a dash up the motorway has left this body feeling more decrepit than ever.  Chronic pain is flaring and spiralling.  Emotions are flipping between tears of worry and screams of anger; a lack of sleep and a definite lack of concentration is overwhelming.

I am sorry to have missed Monday Magic yesterday.  This poem that I found by Patricia Grantham seems appropriate!

Lifes Curve Balls - Poem by Patricia Grantham

Are Most Spoonies Suffering from MCAD?

If you are a spoonie might you have Mast Cell Activation Disorder? I definitely have symptoms…….original post from The Zebra Pit

The Zebra Pit

Are Mast Cell Activation Disorders (MCAD) being missed and heavily under-diagnosed in a large portion of patients with chronic illness? Could these easily misunderstood conditions be the cause of the rapid fluctuations in your health? Do you start out having a great day, only to have your energy levels plummet within hours or moments of leaving the house or even just eating or bathing? Your wildly fluctuating fatigue levels might be trying to tell you you’re a special kind of spoonie, referred to by some as a Mastie. MCADs are a common comorbid condition to Ehlers-Danlos Syndrome (EDS), Hypermobility Syndrome Disorders (HSD), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS), Neurally Mediated Hypotension (NMH), Fibromyalgia, Interstitial Cystitis and other spoonie conditions.

Masties are people with Mast Cell Activation Disorders (MCAD) including Mastocytosis and Mast Cell Activation Syndrome (MCAS). This group may also include people with histamine intolerance, who…

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Monday Magic – Inspiring Blogs for You!

Another week, another Monday!  Where does the time go?  Well….hospital visits have figured quite heavily for September and I have already clocked up orthopaedics and gastrointestinal, with urology, rheumatology and my GP all coming up in the next week.  What a thrilling social life I lead!!

Monday Magic Inspiring Blogs for You! 17 sept

There have been a couple of great trips out this week – I wrote about the ball at The Oval cricket ground hosted by my old school in my last post, but hubby and I also went to see the live cinema screening of the RSC production of The Merry Wives of Windsor.  Absolutely hilarious!  It wouldn’t be everyone’s cup of tea, particularly if you are a Shakespeare purist – but it is set in current day Essex styled “Windsor” with lots of leopard skin, gold chains and botox!  The cast are superb and bring an old tale right up to date as the wives of Windsor show their strength as they turn the tables on Falstaff.  I haven’t laughed so much in a long time – and it isn’t often that it would be the Baird who I would say this of.

I want to do something a little different with Monday Magic Blogs this week.  Over the last year I have been nominated for various awards and tags by some lovely blogger pals, and i am very aware that I have failed to get my act together to join in the communal fun that these awards can bring.

Firstly a huge thanks for these nominations go to:

Wendy at Picnic with Ants and Michelle at Jumbled Brain for tagging me for the Three Day Quote

Tasha at Pain Warrior Code for the Mystery Blogger Award

Alyssa at Fight MS Daily and Tasha at Pain Warrior Code for the Liebster Award

Ali at Notebooks and Glasses for Behind the Illness

Terri at Reclaiming Hope for The Sunshine Blogger Award

Gary at Fiction is Food for The Blue Sky Tag

……and I really hope that I haven’t missed anyone out!  I have also added

Caz from Invisibly Me and Sheryl from A Chronic Voice – they may be pals I have forgotten on the nominations list, but they are definitely bloggers who have offered me a huge a amount of personal support, sharing and kindness!

I will try to combine some of the challenges in these posts to write a little about myself (at the risk of boring you all silly), but meanwhile I want to share some blog posts with you from these inspiring bloggers!  So without further ado grab a cuppa, turn your phone off and sit back to enjoy these posts….

https://picnicwithants.com/2018/09/13/i-dont-mean-to-fighting-depression/

https://www.jumbledbrain.com/2018/08/20/simple-bug-vs-brain-injury-disaster/

https://painwarriorcode.wordpress.com/2018/09/11/do-you-know-when-a-flare-is-about-to-happen-painwarriortalks/

https://painwarriorcode.wordpress.com/2018/07/11/hang-on-in-there/

https://fightmsdaily.com/2018/09/11/never-stop-believing-in-hope/

http://notebooksandglasses.com/2018/09/16/september-link-up-party-with-a-chronic-voice/

https://reclaiminghope.blog/2018/09/17/on-a-weather-break-be-back-soon/

https://fictionisfood.com/2018/09/06/are-you-a-writer-then-join-in-this-september-and-spin-us-a-yarn-blogbattle-is-back/

https://invisiblyme.com/2018/09/11/september-pain-awareness-month/

https://www.achronicvoice.com/2018/09/15/singapore-chronic-illnesses/

 

I hope that you enjoy these – Sheryl’s pictures of Singapore are wonderful!  Please like, comment and share these posts!

Have a great week,

Claire x

 

 

A Change in Season, a Change in Symptoms and Foodie Memories!

The weather has turned – my joints and dodgy bits of body are telling me it is colder, even if the sun has been shining.  Last night we went to a posh do at The Oval cricket ground and there was a drinks reception on the roof terrace before the meal.  On arrival it was suggested to guests that they left their coats on the second floor before ascending to the fourth floor.  It was lovely looking over the stunning cricket green (it really was very green) as the sun went down – but it was freezing!!  There was a blustery breeze that left many of the ladies’ bare shoulders blue and goose pimpled in their strappy evening gowns.  I had kept my outer layers on – a cape that looks a bit posh due to a fur collar – but my spinal cord stimulator and chronic nerve pain were doing battle with each other as to which could out do the cold air!

Earlier this week hubby and I were out shopping and again I was caught out by the sunshine!  Something that you don’t realise when you are up, mobile, walking and running is just how cold it can get sitting in a wheelchair.  My legs and feet were freezing and the cape (not the one from last night – one that Dad calls my “old lady blanket”) I usually tuck around me was safely in the car.  It is time to change the clothes, pack the summer shoes away and accept a different set of symptoms as the POTS faints decline as the temperature drops, and the chronic pain flares.

A change in season pin

 

This is the autumn term now and when I saw Lorna’s writing prompt (Autumnal food memories) on Gin & Lemonade it got me thinking to times in the past when I could go out without constant chronic pain.  I’m not moaning, looking for sympathy, just merely reminiscing!  My memories of autumnal food takes me back to the Halloween/Guy Fawkes nights of my primary school days and the bonfire celebration that we would attend as a family held by my brother’s school.  It was in the rugby field and the big treat would be toffee apples – hard, crunchy, golden toffee casing over soft red apples.  Dreadful for our teeth Mum would tell us every year!  But then as the evening temperature dropped and feet started to go numb inside wellie boots, there would be polystyrene cups of hot tomato soup – Heinz in those days of course! – and never has soup tasted so good.

appetizer bowls cream creamy

Photo by Pixabay on Pexels.com

Thinking back there were aches and pains in some of my joints even then, but all put down to me being bendy (correct!) or growing pains (wrong!).  But the memories of that tomato soup, sticky toffee apples and not forgetting the fireworks and bonfire, will always makes me smile.

heart shaped fireworks

Photo by Kartik Gupta on Pexels.com

 

Make your own toffee apples with this simple recipe from the BBC Good Food site

The latest in The Lambeth Group series – Book Review “Tears of Fire” by Gordon Bickerstaff

When given the opportunity to read the next book in The Lambeth Group series, I couldn’t refuse as I had loved the others. The opening scenes start with the female lead Zoe Tampsin apparently about to lose her life have finally been brought to “justice” by an elite group of British statesmen. A death sentence hangs over her…
Tears of Fire Pin

However it would not be a Lambeth Group thriller if Ms Tampsin and her partner, scientist Gavin Shawlins were not at the centre of the plot. They are soon embroiled separately in the same case – involving the health clinic of one Dr Traherne and his “employees” nurses Seng and Jung. It becomes apparent that these ladies are not the average caring nurses one would expect to find in a hospital!

This fast moving drama draws in the CIA, the British government and North Korea – just for starters. Zoe and Gavin suddenly find that it is not only their lives that could be in danger as they delve into a web of mass murders, revenge killings and international political relations – their own loved ones have become targets and they must make some difficult decisions to bring down the antagonists, but also to keep their families safe. No spoilers!!

If you have read my previous reviews, you will know that I have become a huge Gordon Bickerstaff fan – and this book does not disappoint! It really is action packed from the start, and whilst it could be read as a stand alone, I can’t recommend enough that you read the previous books to understand the back story for the characters. I might have mentioned once or twice before that I really admire the choice of such a gutsy, strong female character to lead the cast and she is joined again by Joss, the equally ballsy female CIA agent who has featured before.

The antagonists are also extremely strong women from a very different culture. I like the way that the author generates a very different feeling in the reader for these women though – they are repugnant in their ruthless actions, their motivation and their complete lack of compassion for anyone who gets in their way. Yet they are prepared to “hide” in plain sight as carers, people to be trusted, and even in this role they will exploit the vulnerable for monetary gain under the guise of euthanasia.

In each book of this series, Gavin Shawlins has grown in character for me. He is becoming more sure of himself, having faith in his convictions and pushing himself beyond his fears. I enjoyed seeing a new strength of character when he feared for the safety of his niece, but also watching his relationship with Zoe continue to grow in trust and mutual respect. The drama and pace are present from the opening chapter of this book right up until the thrilling finale, and Gavin proves h
is value to Zoe once more – although she might not admit to this!

Think of action packed political and spy investigative thrillers (Bond, Mission Impossible, Jack Ryan, Spooks), put a woman in the driving action hero role and follow the twists and turns – this is the speed and intrigue of the latest Lambeth Group thriller. I was hooked from start to finish and was genuinely taken by surprise as some of the plot twists revealed themselves. Really great read that I thoroughly recommend!

Thanks to The Book Club on Facebook and the author for the opportunity to read this book in exchange for a fair and honest review

Available from

 “Readers’ Favorite” GOLD medal winner in Fiction-Thriller-Conspiracy Thriller

About the Author

GFB picI was born and raised in Glasgow but spent my student years in Edinburgh. On summer vacations, I learned plumbing, garden maintenance, and I cut the grass in the Meadows. If I ran the lawnmower over your toes – sorry.

I learned some biochemistry and taught it for a while before I retired to write fiction. I like DIY and I do some aspects of DIY moderately well and other aspects not so well. I live with my wife in Scotland where corrupt academics, mystery, murder and intrigue exists mostly in my mind.

I write the Gavin Shawlens series of thrillers: Deadly Secrets, Everything To Lose, The Black Fox, Toxic Minds and Tabula Rasa. They feature special investigators Zoe and Gavin. More will come in due course.

I enjoy walking in the hills, 60s & 70s music, reading and travel.

Find Gordon Bickerstaff :

Twitter

Facebook

Website

Goodreads

 

 

Monday Magic – Inspiring Blogs for You!

Good evening!  I haven’t been here for a whole week – well not actually writing on the page anyway.  It has been a busy week with several trips into central London and I am still hopeless at pacing myself – so a very long day for my son’s graduation, a theatre trip and a house full of youngsters has left me devoid of anything resembling a brain to write, comment on posts or do little other than sleep and eat, in that order!

Monday Magic Inspiring Blogs for You! 10 Sept

The graduation day gave my parents, hubby and me the opportunity to be those really embarrassing grandparents and parents.  Personally I don’t believe that we were anywhere near the top ten for winning those awards on the day, although I expect the young engineer would say otherwise.  I actually allowed him to choose which dress I would wear – between a bold floral number and a black and cream block symmetric piece – he chose what he described as the “boring” one, but I’m not sure that was quite the response I was looking for.  When my mum got in the car though, she was greeted with “Oh no,  you’ve worn a lairy dress, Grandma” (thoughts in the comments please!).  We actually looked quite understated compared to some of the other graduates and guests – some actually appeared to be going to weddings or balls – so I really don’t know what his lordship was worried about, but we managed to have some fun on the blustery terrace of the Royal Festival Hall with an impromptu photo shoot, with me on my feet!

SONY DSC

SONY DSC

Having a mum in a wheelchair (and remember this is still a relatively recent addition to our family transport) isn’t always the best way to fly under the radar, but sometimes it does have its advantages – particularly when the queue for the official photographers is snaking around the whole reception area of the RFH and those with disabilities are ushered to a much shorter queue and given every help required.  I am also delighted to report that the RFH staff ensured that I had a suitable spot for my wheelchair, were quick to find me alternative toilet facilities when the disabled loo on our floor was out of order, and brought out extra food when I had missed it due to said toilet issue!  All in all the accessibility in the Royal Festival Hall was great…..even if the strange singing lift was a bit creepy (the haunting “voice” sang up a scale as we ascended and ran back coming down, singing the level as the doors opened).

We were joined by our other young adults, including the young engineer’s better half in possession of a beautiful bouquet, and my brother for a celebratory dinner – although the politics student and lovely girl were only just leaving the house when they should have been arriving in London.  Oh the joy of youth, when the world is your oyster and time keeping so unimportant!!  A great day was had by all.

SONY DSC

 

I have managed some reading, despite a lack of writing, and have put together some more blog posts for your enjoyment.  Once again the posts are all very different and incorporate mental health, beauty, cookery, reading, and some comments on life!  Kicking you off this week is poetry from Inner Voice Actor and the title alone called out to me…”You ain’t giving up”.  Sit back and enjoy!

 

https://innervoiceactor.wordpress.com/2018/09/06/you-aint-giving-up/

https://www.sizzlingtowardssixty.com.au/putting-the-me-into-mental-health/

https://writeofthemiddle.com/beauty-make-up/

http://nextphaseinfitness.com.au/10-tips-to-ensure-you-exercise-consistently/

https://riverandquill.com/2018/09/interstitialcystitisawarenessmonth.html/

https://www.jumbledbrain.com/2018/09/06/guest-post-leanne-whitehouse-on-her-30-year-tbi-anniversary/

https://myyeka.com/what-is-the-right-kind-of-attraction/

https://libertyonthelighterside.com/3-cup-southern-african-cheese-puffs/

https://virtuallyallsorts.com/read-a-book-day-are-you-well-read/

http://angelanoelauthor.com/inspiration-motivation/relationships-when-a-run-is-not-about-running/

Please like, comment and share these posts – make a blogger’s day!

Have a great week,

Claire x

Monday Magic – Inspiring Blogs for You!

Good afternoon!  For many in the UK this is back to school week – today hubby and teachers across the country have school inset training days, whilst the kids enjoy their final days of summer.  The school uniform is bought, the pencil cases packed and soon the countdown will be on for Halloween.

Monday Magic Inspiring Blogs for You! Sept 3rd

This is the first year in about 18 years that school uniform hasn’t been bought in our house!  The lovely girl has a very loose, smart “own clothes” code for the sixth form – although mum has a feeling that this could prove a lot more problematic!!  The first line of the code made me both smile and sigh – “no underwear to be on show”……so no knicker skimming skirts, shorts need to be long and tailored, no bras or cleavages on show.  How times have changed since my day – the only concession we got in the sixth form was girls didn’t have to wear blazers or ties; the boys had no concessions.  Skirts above the knee….forget it! The girls have been out shopping – last week they visited the interesting God’s own Junkyard with its displays of neon lights amongst other places – and she did return with a skirt….it definitely doesn’t reach her knees!

 

The young engineer has been away at a festival this weekend, but it is far removed from those visited by his brother this year.  I think an accurate description would be a “Geek” festival where like minded inquisitive souls meet up and CREATE!  Never will you attend a camp with such power, high speed wifi and every imaginable technological gadget – one comment on instagram said “You know you are at @emfcamp #emfcamp and not any other festival when the guy in the tent next to you is running a server from the porch of his tent :)”  It is based at Eastnor Castle in Herefordshire and this year additional power and wifi had to be installed, so my bet is the local villages will have the fastest internet connections in the whole UK!

 

Last year the young engineer and his friend built a giant (8 feet) version of Guitar Hero – wires and lights were arriving at our house for weeks before (you can see it on Youtube here: https://youtu.be/AOU09T3l9Kg).  This year he has taken his better half who is a software engineer but frankly I’m not sure that he knows what he has let himself in for.  They are due back later today…..

This week the young engineer officially becomes a Master of Engineering & Software when he graduates at the Royal Festival Hall.  I am hoping that I will have some very embarrassing pictures to share of him wearing his gown and mortar board!

The first blog on today’s list is about the EMF camp, but if this doesn’t grab you then hopefully you can be inspired by the others on the list.  I have found a post about an artisan Mead brewery (having seen them featured on a BBC programme), some timely back to school views from a teacher, and a new blog from a cyclist touring through Kyrgyzstan to Nepal.  There are also some great life posts and my favourite title has to go to “The Special Stank of a Boy”!

https://hackaday.com/2018/08/14/looking-forward-to-electromagnetic-field-2018/

http://viking-mjod.no/apothecary-mead-legends-of-sherwood/

https://butismileanyway.com/2018/08/30/the-onset-of-inset-days-backtoschool-teacherslife/

https://inspiremystyle.com/2018/08/26/leading-a-fulfilled-and-healthy-life/

http://www.secondhand-life.com/2018/08/anxiety-storms-demons-on-the-boat/

http://janetgivens.com/at-seventy-seven-thoughts/

https://thewildreaderwithacat.wordpress.com/2018/09/02/beautiful-houses-%F0%9F%98%81/

https://woods-wanderer.com/2018/09/02/cycle-touring-chapter-7-osh-to-kunelek-kyrgyzstan-an-ode-to-kolbek/

https://butterflyinremission.com/2018/08/21/how-i-experienced-mindset-shift-motivation-life-change/

https://hotmessmemoir.com/2018/09/03/the-special-stank-of-a-boy/

I hope that you enjoy this great mixture of posts…..please like, comment and share!

Have a great week,

Claire x

 

 

Round and Round – My Zebra Journey #SoCS

Round and Round - Pin

Round and round, up and down.  I seem to be moving along in my life but never getting anywhere!  When I look a bit closer I am travelling on a merry go round – round and round, up and down, a never ending circle that just doesn’t reach my final destination.  Others around me are on the travelator – the kind that you get in the airports or new supermarkets – and seem able to see their destination and even to jump on and off en route.

But my journey continues round and round, up and down as the ride continues relentlessly day in and day out.  When I look down I realise that I am not even seated on a brightly coloured galloping horse decorated in golds and silvers like the others accompanying me – yes there are others who seem to be at a stage in their journeys of being on a hamster wheel, unable to reach a destination.  Instead I am seated on a zebra – a stunning animal admittedly, and not so dissimilar to the horses around it in shape and size.  He has a mane, a tail, hooves and he can gallop at great speed.  To hear him coming you might mistake my trusty steed for a horse – but he is not, he has stripes and he is a zebra.

My companion on my life journey is different and I am unable to jump off the merry go round that he is firmly bolted to.  I raise my hand at fellow travellers passing by and the others joining me on my ride….every so often another zebra joins us and we continue our journey together. Up and down, round and round.

This is part of Linda G Hill’s Stream of Consciousness – pop over to her site, read the rules, take the prompt “Round” and start writing….then link up!

stream-of-consciousness-saturday-2018-19

Why the Zebra?

The Zebra has been adopted by the Ehlers Danlos Syndrome community as traditionally medical student have been taught throughout training that “when you hear hooves, think horses, not zebras” – think of the obvious conditions first, rather than the exotic and rare.  Thus in medical circles, the term “zebra” is used to describe a rare disease or condition and we EDSers are referred to as zebras!

EDS-random-fact-21-The-zebra-is-our-mascot-There-s