Monday Magic – Inspiring Blogs for You!

Monday Magic 29 JanGood morning on the last Monday of January!  Our week has passed in a flurry of parents’ evening, book club, Burn’s night celebrations and not forgetting our son’s better half being offered a great new job.  Funnily enough we haven’t had any news on the politics student other than a text about football scores – oh, the life of a first year student!

Parents’ evening was like a speed dating event…five minutes per teacher and when the bell rings get up and run!  Not sure the computer goblin automatically churning out slots on the online booking system had allowed for mass movement between the hall and the library, and he hadn’t allowed for a wheelie like me – although hubby just used the wheelchair to barge through other parents!  For Burn’s night we were greeted by a piper resplendent in kilt , sporan and full regalia.  How is it that one set of bagpipes can sound as loud as the  (what is the collective term for bagpipes – haggis? sporan? noise?) whole Edinburgh Tattoo?  It certainly had the desired effect of moving guests swiftly from the lobby to the dining area, but I think the ladies serving whisky must have been deaf and in need of a few drams by the time the meal was served.  Slightly disappointing this year was the lack of kilts….couldn’t persuade hubby into one!

Our book club read the new Emma Donoghue book The Wonder this month – review to come – and as usual we had lively debate from the actual book, to last month’s book again (The City and The City by China  ……..) which is being made into a TV series starring David Morrisey, to the current BBC TV series McMafia and Hard Sun.  Amongst the blog posts that I have for you this week is an online book club aimed specifically at those who would find it hard to get out of the house to attend one.  This could be spoonie friends, elderly, young/new mums….anyone who enjoys a good book.  Talking of which, I am taking part in a blog tour this week so will just drop a flier in for it – more info later this week.Review Tour

I am sitting here Nil By Mouth and have a hot date with a gastroscope this afternoon, so it does pain me somewhat to invite you to pick up your coffee…..but I will do just that and encourage you to kick off your shoes, sit down and enjoy some great posts from some lovely bloggers.  Maybe I will give the pilates a go whilst you down your caffeine….

https://survivinglifeshurdles.com/the-surviving-life-book-club/

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courtesy of Surviving Life’s Hurdles blog

https://www.midlifesmarts.com/theres-new-ism-plump-ism-and-its-rife/

http://achysmile.com/index.php/2018/01/25/daughters-migraine-school/

https://www.nicolefrancesca.co.uk/homepage/2018/1/22/i-am-the-1-10-statistic

http://millysguide.com/6-reasons-pilates-good-mental-health/

https://www.chronicmom.com/2018/01/how-to-deal-with-people-who-dont-believe-youre-sick.html/

https://reclaiminghope.blog/2018/01/26/whats-your-favorite-01-26-18/

https://www.trulymadlysassy.com/2017/12/19/the-gift-of-loneliness/

https://ribbonrx.com/2018/01/29/two-frightening-side-effects/

https://emlinthorpe.com/2018/01/22/being-blanked-made-me-smile/

 

Please comment, like, and share the posts you love.

Have a lovely week,

Claire x

Why Me? Well Why Not me? A Trip in the Tardis won’t be Changing my Lot!

Today I finished reading a science fiction book that has got me thinking – not my usual cup of tea but I have been asked to review it, so that will be coming!  Anyway the premise of the story was of life taking different turns and thus different timelines – the what if? or sliding doors scenario.  The main character finds himself with 3 different versions of himself due to time travel – the timelines all run from 1965 to 2016 and the world is a very different place in each one.  Which timeline is the correct one for the world? Is there such a thing as the “correct” one? How can one minute action change the whole future of the world? If we were all given different life timelines would it be possible to always make the right choices?

Life is full of uncertainties and every day is full of actions that will have consequences. How many times have you wondered after an event “what would have happened if I’d gone left rather than right?” It made me think about a recent conversation where a mother was saying that her poor teen child was always the one that things went wrong for, had the worst health problems, and suggested everyone around them should be sympathetic.  She said “When my teen gets upset and asks why does it always happen to me, I agree that it isn’t fair.”

Why Me

But is this the right way to answer?  Is Mum allowing the teen to always put the blame for every situation on to someone else? It may be better to stand up straight, shoulders back and tell the world “well I don’t like what has been handed to me, but I’m going to damned well get on with it”.  Over the years a powerful message that I learnt from so many patients was the “Well why NOT me mentality?”.  As you all know I can apply this to my health – I don’t have a fatal condition (neither does the teen!), but it is tricky to live with and I find it hard to think I may be like this for another 40 years.  I wonder if I hadn’t taken up rowing aged 12, or if I hadn’t become a nurse, or if I hadn’t fallen down the stairs in my second pregnancy and hurt my back again (hmmm….might answer some of the questions about son number 2!!), or hadn’t had a third pregnancy, or had genetic testing, or, or, or…..there could be so many different timelines if only something had been done differently.

But what a waste of energy.  The past can’t be changed and sadly I don’t yet have a time machine…..and even if Dr Who did offer me a spin in the Tardis, how much would it change?  Not my genetic condition…..I could think “Why me?”, but actually the bigger question is “Why not me?”.  When a close friend died aged 37 from breast cancer, I did ask “Why her?”…….but then look out the window and it could be anyone’s mother, father, brother, sister, friend couldn’t it?  If I could change our family timeline I would want to ensure that my kids hadn’t inherited EDS and that nothing bad would ever happen – but I can’t do that, so my job is to ensure that they accept it, live life to the full and for the moment.  If problems arise – the politics student’s migraines, the lovely girl’s dislocations and pain – then we will deal with them…..but by shouting “why me? it’s not fair….” is not going to help.

So, back to my novel – the main character found that every time the scientist invented a new machine, he also invented the “accident” of that machine; every time he was sent back to try to alter the timeline/revert to the original timeline, his actions would have a knock on effect….with unforeseen consequences.  I think I am actually starting to sound like my old physics teacher – for every action there is an equal and opposite action – or something like that!  So I guess for me and the teen, it means we have to get up, not dwell on the bad bits (sometimes easier said than done) and get on with the good bits.  But this is only one old crone’s ramblings!

Although if I’d had that time machine and could have made it so that I could join in at the SHS Burn’s night dancing last night…..equally I think hubby, Duncan, would be turning his back so that he wasn’t swept up to do the Gay Gordons!!

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Burns Night Celebration – picture from SHS Association

Have a great weekend!

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Monday Magic – Inspiring Blogs for You!

Here we are at the start of a new week and time to explore some more blog posts.  This week has passed in a blur of hospital visits – as you know if you’ve read about my rusty old body int the last couple of posts! – and I must admit complete brain fog and cluster headaches.

The brain fog has caused much hilarity at times when my words have come out as something completely different to how they started in my brain.  Officially called expressive dyphasia, and commonly seen with strokes, I don’t think I’ll tell you how it is described in our house….I have experienced it once before when playing football at school aged about 12.  I had a head on collision with a friend, nearly knocked her teeth out, and then proceeded to become very concussed over the next couple of hours.  By the time I reached hospital, I couldn’t walk, speak or see – as the swelling inside my head started to subside, I remember being asked questions, knowing the answer but the words that came out were not connected to my brain!  I am sure that some family members would say that nothing has changed…..

Monday Magic - with brain fog

I’m just reading a science fiction book and came across this passage “There’s a small subset of people whose cognitive functions get scrambled in outer space.  Something about how the pressure change of the vacuum affects the bonds between molecules in the neurons of their brains.” (All Our Wrong Todays by Elan Mastai) I had a light bulb moment – “YES! This is brain fog – even if it is in space”.

But moving on – checking over my spreadsheet of Monday Magic posts, I am amazed to see that there have been links for an amazing 354 blogs and some of those have featured several times. What a fantastic number of inspiring and motivational bloggers there are out there, and I feel that I find more new blogs every week.  So please take some time, sit down with a cuppa and enjoy some great posts with a bit of a self care theme running through them – all spoonie mums, my mate Jen Hardy would be really grateful if you would answer her survey ahead of a podcast.

https://loveisconfusing.com/2017/08/16/three-steps-to-loving-yourself/

https://iterryblog.wordpress.com/2018/01/20/signed-and-sealed-with-love/

http://wherecomesthesun.com/practise-self-care-year/

https://fancy-like-that.blogspot.co.uk/2018/01/me-myself-and-my-cfs.html

http://www.chronicallyroyal.co.uk/2018/01/just-asthma-why-we-should-take-asthma.html?m=1

https://shannondianax.wordpress.com/2018/01/20/talking-about-my-mental-health-has-made-me-into-the-person-i-am-today/

https://www.jenhardy.net/take-survey-podcast-chronically-ill-moms/

http://www.sunshineandspoons.com/2018/01/25-products-that-make-life-with-chronic.html

https://kellyontherun.com/2018/01/16/single-not-pregnant/

http://www.fibrotofabulous.com/index.php/2018/01/09/why-i-restarted-meditation-and-10-reasons-you-should-do-it-too/

Heated Butter Knife
Who wouldn’t want a heated butter knife???  Find this on Sunshine and Spoons list!

Please remember to share some love by commenting, liking and sharing!

Have a great week,

Claire x

Tuned Up and About to Charge the Battery – the Pain Clinic

So I made it to the pain clinic in one piece – just!  The body work did its utmost to stop me and it was probably the furthest that I have travelled in my motability chariot (in time – it was rush hour travelling into London, you understand!) – so our arrival at St Thomas’ was surrounded by a cacophony of feelings in back, hips and thighs, with the right hip spluttering the loudest.

Fortunately parking is never an issue because the carpark is so blooming expensive – but, any blue badge pals out there – did you know that at St Thomas’ you are able to park for free if you show your appointment letter and you actual blue badge to PALS.  At Guys you can also park for free in the NCP carpark along the road by presenting your letter, NCP ticket and blue badge to security before you leave.  Might have saved someone a small fortune there!  What was an issue was getting into a lift from the basement to the ground floor – I mean, come on people, I am not sitting a wheelchair because I am feeling a bit tired.  I can’t actually climb the stairs!!

Tuned Up

The engine revived with caffeine and banana, we checked in to the pain clinic which faces directly opposite Big Ben and the Houses of Parliament – currently shrouded in scaffold.  I always forget just what a wind tunnel is created along this stretch of the Thames and Wednesday morning was no exception – good job I was using my wheels because the icy gusts would have tackled me easily.  As predicted the CNS was surprised and concerned when she saw me, but once I reassured her that the bodywork changes before her are down to the dreaded stretchy body parts, she went about checking the pain levels.  I am pleased to report that once her little box of tricks “spoke” to my implanted little box of “tricks”, it was established that my switching on and off, general usage of the stimulator and recharging is all scoring full marks! Hurray.

Next the tricky part.  Any chance of a retune?  This was no problem and the external box turned off and then turned back on the internal box…..jump starting the battery back to life and automatically altering the sensation.  The biggest difference is the feeling in the sole of my foot – it is difficult to describe, but the electrical pulses feel more rapid and “wider”.  The pathway of the pain through my foot is so specific that I could draw it for you to see, so the area that needs to be covered by the neurostimulation is very specific and so very specific electrodes in the lead on the spinal cord need to be active.  But how about getting some of that lovely electrical stimulation that knocks out the way my dodgy wiring sends perceived pain to my nerve centre – my brain – into my right hip and thigh??

Of course the proper response is that nothing can be altered for pains that haven’t been investigated – it wouldn’t be good to mask pain that is due to injury or a new illness.  But of course in this case one bendy chassis is causing wear and tear on the bearings and axles, putting the tracking off massively.  The biggest concern had to be keeping the pain coverage in my right side to the same level – it would be awful to lose the fantastic coverage i have.  But with a little tweaking she managed to give me a little sensation in my hip and if I lean back into the chair (or better still lie down onto the electrodes) the strength of the stimulation increases.  It doesn’t get rid of the pain or even mask it in the same way that it masks the nerve pain, but any little bit of relief this rust bucket will take!

So the bodywork may not have been replaced by a shiny, sleek sports model, but with a bit of fine tuning it is slightly more comfortable.  (BTW the beach buggy above was Dunc’s first car, and whilst sparkly, not very comfortable!). Thanks for all the good wishes – really appreciated.  Now I’m off to recharge my battery for a new week…..and in this case I assure you I am being literal, not metaphorical.  Should take me a couple of hours to complete!IMG_0817

(BTW: any St Thomas’ pain/input patients out there – the booking system was changed last year and the nurses are no longer allowed to book our appointments.  But since central bookings has taken over, quite a few of us have slipped through the net – hence why I had no appointment last year.  If you have a problem call them or email the nurses at their catchy new address:

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Monday Magic – Inspiring Blogs for You!

Welcome  to a bit of Monday magic – I hope you all had a great weekend.  We saw the middle child, aka the politics student, return to university yesterday and I don’t think it took too much preparation on his part because he hadn’t unpacked most of it since his return!  Yes, he has been living from the cases on the floor of his bedroom for the last few weeks, which have become increasingly full of chocolate wrappings from Christmas, crisp packets, new gifts, clean washing, dirty washing…you get the picture, not an inch of carpet to be seen.  Anyway hubby deposited him back yesterday with or without all that he needs and the next thing will be to reclaim the room and change the odour from Eau de Teen Boy to fresh air!!

The eldest continues to undergo job interviews from the various applications that he has put in.  Since when did the selection process become so complicated?  If you get shortlisted from your application, you firstly complete a phone interview, then online psychometric tests (“Mum should I say what I think they want to hear, or what I think might be right, or is there even a right answer?” “How on earth should I know? I’m just your mother!”) then in his case, a phone/skype interview with a live computer coding test…..and then after all this a face to face interview in an office, meeting a real person, drinking coffee and talking!  Wow!  He does have a final interview this week with a big American firm (so I’m told) – but I have no idea what they do, what he would do…..just hope something comes to fruition …..and if it requires a move out of home and away from my kitchen & bathroom, hurray(and then we will welcome him back for visits with open arms!!).

This week I was sad to see a couple of blogging groups’ admins have to post that group members were not following basic rules and were not supporting the spirit of the groups.  I really hope that this is the minority of bloggers and that the majority still look to support others, follow people because of a genuine interest and to interact.  Maybe I am being naive, but I hope not.  I have some old blog friends and some brand new bloggers to introduce here with a huge variety of post – from healthy eating (although the advice will not work with the student engineer!) to dealing with bullying to the hilarious post from Hot Mess Memoirs about giving back crying babies.

Daniel

Sit back, grab a cuppa and enjoy some terrific posts!

https://positivelyrachel.com/2018/01/11/living-with-overstimulation-and-hypersensitivity/

https://livingthechronicillnesslife.com/2018/01/11/engaged/

http://thehealthsessions.com/eat-vegetables-with-every-meal/

http://www.bbhwithms.com/i-used-cannabis-daily-for-my-chronic-pain-for-the-past-year-this-is-what-happened/

https://chroniclesofmyalgice.wordpress.com/2018/01/13/21-days-of-prayer-fasting/

https://invinciblefortitude.com/2018/01/11/7-tools-against-bullying/

https://hotmessmemoir.com/2018/01/13/new-babies-giving-back-cry/

https://www.health-hats.com/3254-2/

https://thenellybean.com/my-issues-with-the-word-influencer/

https://sarcasticbohemian.com/2018/01/12/how-to-survive-nightmares/

Monday Magic - Inspiring Blogs for You! 15 Jan

Please remember to support some fab blog posts by sharing, commenting and liking.

Claire x

Monday Magic – Inspiring Blogs for You!

A week into the new year, the decorations are down, the Christmas tree is looking forlorn on the back lawn and the kids back to school.  Well in our case nearly…..the lovely girl returns tomorrow, the middle child returns to university next weekend and the student engineer returned today, just as the UK train strikes started up.

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Monday Magic - Inspiring Blogs for You!
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Our house has been a mad frenzy of coursework this last week – 2 projects for the final year of Engineering involving analysing the use of Boris bikes in London and Deep Learning (whatever that may be!); the lovely girl has been finishing her sketch books and final piece for her art, although any visitors would have thought she was decorating the lounge!!  The title of her works – “I, Me, Mine” and “Blood, Flesh, Bones” – so she has focused on our genetic Ehlers Danlos Syndrome.  I have spent some time modelling for her photographs and I wish I could report that they are super glam….but they are not!!!  Instead she wanted close ups of my body parts which looked the most veiny – charming.

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My Elbow!

Hubby managed the delayed visit to his parents, and whilst he was away I enjoyed reading and sharing a huge variety of blog posts.  This is just a small assortment varying from favourite books, to beauty products to a yummy recipe for dairy free ice cream.  Two that really stand out, and are poles apart, are Tania’s about her need for a Smartdrive for her wheelchair (I am slightly biased as we share the same condition) and The Bryntin Project’s plea to us all to realise the harm our birthday balloons are doing.

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So grab a cuppa and take a break whilst you dive into some fab blog reads.  Please comment, like and share!

http://www.whentaniatalks.com/fundraising-for-a-smartdrive/

https://croneconfidence.com/2018/01/06/first-world-blessings-2/

https://www.themerrymomma.com/2018/01/top-10-favorite-books-2017/

http://countingmyspoons.com/2018/01/ten-tips-combating-chronic-pain-winter/

http://chronicallyhopeful.com/first-outing-5-months/

http://littlemissmelanie.com/2018/01/07/favourite-beauty-products-of-2017/#utm_source=rss&utm_medium=rss&utm_campaign=favourite-beauty-products-of-2017

http://www.makeitbakeitfakeit.com/2018/01/the-most-amazing-dairy-free-mango-ice.html

http://www.corter.co/2018/01/the-way-ill-slay-in-2018.html

https://brainsandbodiesblog.com/2017/11/10/5-ways-to-have-a-productive-day-with-a-chronic-illness/

https://thebryntinproject.wordpress.com/2018/01/07/birthday-littering/

Have a great week,

Claire x

 

Calling all Mums and Mums to be who have experienced #Fibromyalgia in #Pregnancy

This post comes from Melissa v Fibromyalgia

Pregnancy and Fibromyalgia Survey, Book and Page

After being disappointed at the lack of information about pregnancy with Fibromyalgia when I had Nu four years ago, I set about writing up my experiences and researching as new information became available.

On my Fibro Mama Pregnancy Diaries page I include my journals from my second pregnancy last year, which I edited and posted over this past year.

Now I’m writing a book!
On my new Fibro Mama Pregnancy & Fibromyalgia page I include the links to the ebook I’m writing as I publish the posts. When it is complete (and edited) it will be available for purchase, with extra content.
For now, could I ask you a favour?
Would you fill in a survey so I can add to the research available (limited) and my experience (two pregnancies makes me an expert in my experience not collective experience)?
Please take the time to visit Melissa’s blog,  her page that includes links to her coming book and the survey.

Monday Magic – Inspiring Blogs for You

Happy Monday PPals!  I am currently sitting here cursing as WordPress decided to wipe my writing of this post and I can’t recover it.  It was finished too!! Aghhhh

Anyway I will attempt to replicate it….the Uk’s Strictly Come Dancing is whirling through the weeks in a series of foxtrots, tangos, quicksteps and more.  This weekend saw the couples entering a whole different level as they performed at the spiritual home of ballroom.  Professionals and celebrities alike are all in awe of the iconic Palace Ballroom, Blackpool which takes centre stage and steals the thunder of the dancers, as it is so breathtaking.

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Image from Google images

This weekend saw the end of the road for an inspirational young man who is a gold winning GB Paralympian and 100m sprinter.  I am of course talking about Jonnie Peacock, the 24 year old athlete who aged 5 years underwent surgery for a below knee amputation, having contracted meningitis.  He is the first contestant with a disability to take part in the main series and there have been questions along the way – Is it fair for Jonnie to perform the same dances as his able bodies counterparts? How can the judges possibly give Jonnie the same level of critique?  Why are the judges picking on Jonnie’s posture, bottom position and stature when he has one leg?

But these questions have never come from Jonnie himself and in his farewll speech last night he said that he was honoured to be the first disabled contestant, and he thanked the judges for judging him as an equal saying

“That’s what I want. You’ve been critical with me and I want that criticism. I think that’s fantastic and hope it paves the way for more people to come through and I think they may be able to stick their bum under a bit better than me.”

His tearful professional partner Oti Mabuse said

“This has been one of the most life changing things that could ever happen to me. Jonnie is not only an inspiration but he represents so much more. ‘If anybody wants to do anything, if you put your mind to it then you can achieve it and that’s what he represents.”

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I am not suggesting that we will all, abled or disabled, reach the heights of this remarkable young man, and for those of us living with chronic illness invariably daily pain and fatigue won’t even allow us to reach the putting our minds to it bit, let alone anything else!!  But this is surely a good mantra to aspire to and Jonnie Peacock has left Strictly a dancer.  Watching him jive on his running blade was a highlight for me…..and not forgetting him as Jack Sparrow on Halloween.

So from one inspiring young man to a handful of inspiring blog posts.  With another weekend of dodgy dislocations, I have read lots of blogs, interspersed with cheesy family movies and heat pads!  I have picked a selection of posts for you from a variety of bloggers – and as yesterday was World Prematurity Day, the first comes with a mascara alert as it is a post from Nicole that is written from the heart.  I have also managed to slip in a Christmas post – never too early – and will aim to do so each week in the build up to the festivities.

So grab a cuppa, sit back and enjoy some fab posts!

https://www.nicolefrancesca.co.uk/homepage/2017/11/19/november-never-forgotton

https://themswire.com/2017/11/19/four-airport-tips-for-disabled-flyers/

https://chronicallystrong.com/lupus-aibd/

https://yadadarcyyada.com/2017/11/17/people-forget-kindness-is-free-2/

http://www.themonochromeblog.com/single-post/2016/09/11/How-to-move-to-a-foreign-country-go-travelling-when-your-a-spoonie-TBC

https://thewildreaderwithacat.wordpress.com/2017/11/18/paint/

http://www.thirstydaddy.com/2017/11/10/the-good-guys-dont-always-win/

https://thedreamgurusite.wordpress.com/2017/11/17/how-i-found-out-about-eds/

https://mydailyjournalonline.com/life-rulebook-guest-post-riya/

https://medicalmysterymusings.wordpress.com/2017/11/19/christmas-expectations/

 

Please like, share and follow these blogs if you enjoy them!

Have a great week,

Claire x

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Monday Magic Nov 20

 

 

 

 

 

Monday Magic – Inspiring Blogs for You!

This weekend has been one of Remembrance in so many places across the globe.  With Saturday being the 11th November, it was totally fitting that the Lord Mayor’s parade in the City of London started with the playing of the last post and a 2 minute silence.  In true UK style, the weather was miserable – I can’t remember the last time it was fair for the Lord Mayor’s show!!  Sunday however was a beautiful, crisp day as the veterans and current serving forces gathered alongside politicians, members of the public and the royal family for the service at the Cenotaph.  The oldest veteran attending, a 99 year old former Royal Marine Ernie Searling, sent a heartfelt message to the world – “I feel very humble seeing so many hundreds of men and women on the parade today. So very, very humble, particularly those who are not with us on this day today… All I hope is that the future generations could see this parade, see some solidarity in it. See that the betterment of mankind in England, especially Great Britain, should be at its highest level. We don’t want street fights. We don’t want arguments. We don’t want racial injustice. All those things are horrible!” He brought a tear to eyes in our lounge.

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Former Royal Marine Ernie Searling

Over the last week the BBC have been broadcasting a series of programmes celebrating and highlighting the roles women have played in war over the last one hundred years – Women at War 100 Years of Service.  – currently available on the iplayer.  It is difficult not to be inspired by the young women of the World Wars who were trailblazers for so many careers that women had previously not been able to undertake – and I would imagine that this is the case in other parts of the world when the men were on the front line.  Some of these women, now elderly ladies, recounted tales of their training and deployment – as radio operators, munitions workers, pilots and engineers. These women paved the way for both women in the forces and in the workplace generally.

My first inspiring blog for you today follows this theme and gives thanks on Remembrance Day – but the others have a mixture of themes from midlife crisis (me!!) to migraines to books & disability to Christmas baking & gifts!  Not on quite the same par as WW2, but I think that you will enjoy these inspiring posts and urge you to grab a drink, take a seat and enjoy.

https://butterflyinremission.wordpress.com/2017/11/10/with-heartfelt-thanks-on-remembrance-day/

https://www.shailajav.in/shifting-perspective-create-more-than-consume/

http://www.crestingthehill.com.au/2017/11/that-midlife-crisis.html

http://www.youcanalwaysstartnow.com/2015/06/01/success-who-gets-to-define-it/

https://brainlessblogger.net/2017/11/12/symptoms-of-a-migraine-that-can-be-as-severe-as-the-pain/

https://ginlemonade.wordpress.com/2017/11/03/3-books-3-blogs-from-gemma-at-wheelescapades/

http://drallisonbrown.com/power-perspective-shoe-fits-wear/

https://cookandenjoyrecipes.wordpress.com/2017/11/11/ess-gf-christmas-candy-cane-butter-biscuits/

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Image fro The Recipe Hunter

https://chronicrants.com/2017/11/01/defining-affordable/

https://theblogbroadblog.wordpress.com/2017/11/11/great-gifts-ideas-from-uncommon-goods/

As ever please share this post and these posts if you enjoy them!

love Claire x

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The need for a challenge to help myself and others #BBCRickshawChallenge

Oh my goodness, what have I done?  I think that I experienced a brain storm this week – well an even greater one than usual!

Two years ago I had only recently started this blog and was recovering from spinal cord stimulator surgery when I wrote about some inspiring young people in the UK undertaking The Rickshaw Challenge.  This is a project that has run for several years now and is championed by the BBC One Show – and particularly by presenter Matt Baker – in order to raise money for the UK charity Children in Need, founded by the late Sir Terry Wogan.  A group of young people who will each have a story, from illness to bereavement to overcoming adversity, and have all in some way benefited from the charity, cycle a route across the UK on the rickshaw as a team and fund raise along the route.

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Image from BBC website

The strength of mind and spirit to succeed always shines from these youngsters every year.  I was caught off guard last week by a young lady called Sabah who is a member of this year’s 6 strong team.  She has had multiple health problems, including cancer, a kidney transplant and now is on dialysis – but she told the audience in a most matter of fact way that she would simply do her stint pedaling the rickshaw and then stop for dialysis.  I was a wreck by this point.  But the determination of these young people, and Matt Baker who cycles the whole route with them giving encouragement and support, has really got me thinking.

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Image courtesy of Google search

My own health has deteriorated over the last 2 years, and there is always an issue with chronic illness and the deconditioning of the body.  For us bendy people with Ehlers Danlos Syndrome it is really important to keep moving and as physically strong as possible – most of us will have exercises from physiotherapists and doctors.  But chronic health can become a vicious cycle (no pun intended) as the body becomes deconditioned due to pain, fatigue etc and then the deconditioning reduces the ability to “move” or exercise, in turn leading to further deconditioning.  Add a spot of dysautonomia into the mix – check out what it is here – in my case dizziness, low blood pressure, raised pulse, fainting (POTS) and you have a recipe for an increasing number of sofa days and Netflix!

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Image courtesy of Google search

So what is a middle aged (eek) girl to do in order to keep the mind and body working? Well, blogging and writing and generally being part of this fantastic online community does wonders for the mind alongside being a school governor and now chairing an alumni committee.  The body isn’t so easy, especially on high pain and flare days.  The spinal cord stimulator still helps to mask the leg and back pain from nerve root damage, but then for the EDS pain throw in some pregabalin, naproxen, cocodamol and the odd shot of oxynorm and the result may be manageable.  The changes in weather don’t help and I am still certain that my titanium spine reacts to changes in air pressure!

But as the young Team Rickshaw show us, there is always someone worse off and always someone to inspire and motivate us.  Sometimes it is important to set oneself a challenge in order to move from one day to the next when life is throwing rubbish about.  I am still learning that those challenges need to be smaller these days than a decade ago – pacing….no, I don’t really do that very well.

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Image courtesy of Google search

So back to my first question…what have I done?  Well I have set myself a challenge and signed up for the Virtual Rickshaw challenge…..I will be riding on an exercise bike from the comfort of my living room between now and New Year.  I’m not going to pretend that I will be burning up the miles and covering anywhere near the real rickshaw ride, or that I will even manage to pedal every day.  But if those youngsters can overcome adversity and put themselves out there, then this old bird can surely help herself ….and if I can raise a little money for Children in Need, then all the better!!

If you would like to visit my challenge page please find it here…..no expectation to donate, but it would be lovely to receive some encouragement and support over the next couple of months…maybe you could even share for me.  I will give you updates of my progress…..so with today as day one I managed 3 miles with only a neck vertebra and shoulder dislocated.  Not bad going for me!!  (Don’t worry folks, I am ok – good excuse to avoid the washing up!)  Onward and upwards…