Currently….July 2017

I found this link up party when visiting Roseann on This Autoimmune Life – she has written a lovely post for the party being co hosted by Stephanie on Wife, Mommy, Me blog.  It is a monthly link up where you are given 5 prompts to answer – Stephanie says it is the easiest blog to write…ever, and Roseann thought it looked like fun.

So here goes with what I am CURRENTLY doing…..

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Documenting – My daughter finally has an appointment with a genetics consultant tomorrow having been turned down by paediatrics and rheumatology for consultations.  So in the hope that she will be recognised as having hypermobile Ehlers Danlos syndrome and have some more help at school, I am documenting her issues to date…mainly pain, dislocations, dizzy spells, lack of coordination….and on it goes along with the strong family history from yours truly and my mum before me.  Wish us luck!

Accomplishing – my initial response is very little, but then I look at my post on this blog “Magic Monday – Inspiring Blogs for You!” and can say that I am accomplishing a regular weekly feature…..thanks to all of your amazing blogs.

Enjoying – my daughter and I are currently enjoying the American teen TV series Awkward – it really has become a guilty pleasure.  The traditional teen drama is turned on its head with irony, role reversals and humour…..we laugh out loud!

Reading – I am currently reading The Devil’s Claw, a proof copy that I will review for author Lara Dearman, Sapiens: A Brief History of Humankind by Yuval Noah Harari and The Versions of Us: The Number One bestseller by Laura Barnett (our monthly book club read).  I read masses and belong to a local group, Netgalley and the fantastic “The Book Club on Facebook” run by Tracy Fenton from Compulsive Readers blog.

Spending – I seem to be spending more and more time visiting different hospital consultants.  I really have gone from being a medical professional to a professional patient!  Good job I don’t mind hospitals – can’t say the same for the waiting room times!

The school holidays have begun, which whilst it means that I have more mess in the house, less food in the cupboards and more stress, secretly I do enjoy having the kids about – even the 21 year old who is currently on a summer internship – but don’t tell them I said that!!

Claire x

Monday Magic – Inspiring blogs for You!

Good morning, it is a beautiful day here in South London and the beginning of the summer holidays.  The A level student – will have to change his name now – has been dog and house sitting for the last week, and the lovely girl is currently in her PJs painting…..she may be great at art, but she is so messy!!  There are paints, pencils and pencil shavings everywhere – the beginning of my lounge turning into an art studio for 8 weeks.

She is currently working a matching picture of her grandparents’ other bull terrier (she didn’t like the first one that she started – pictured!!), has been asked to paint some canvases for the library in her old primary school (I think Harry Potter will figure!) and has a viking picture on the go for an instagram pal.  Oh, not forgetting the self portrait for her course work and the scrap book entitled “Blood, Flesh & Bones”.  She is taking some hideous pictures of family members hands, feet, elbows…..my dad told her she can’t afford his fee to strip off!!

Lucy self portrait

The start of a huge self portrait

As for me, well it has been a tricky week as you will have seen in my post about my benefits review, and I hate to complain about the lovely weather but it does send my circulation/POTS problems crazy.  I did manage a night out in London with Duncan though!  He told me we were going to a jazz concert in the Crypt of St Martins in the Field, Trafalgar Square – but when I saw some news feed that morning I had a sneaky feeling that I was actually being taken to the Formula One Live event in Trafalgar Square!  I wasn’t, but it did mean that the whole area was extremely busy and this was my first time in the wheelchair in a very crowded place which was quite intimidating.  The concert, with the wonderful Zena James, was fab though – a mixture of traditional and modern music jazzed up.  You should hear Zena’s version of Rag & Bone Man’s “Human”!!

Monday Magic

This week I have some posts on blogs that are all new to me and I have really enjoyed finding them.  I hope that you all enjoy exploring some new reads too…..so sit back with your cuppa and take some R&R with a new blog post!

https://needlintobenormal.com/2017/07/06/you-cant-go-back/

https://asecondlifeweb.blog/2017/04/11/idiocy/

https://headachehelper.wordpress.com/2017/07/16/the-what-not-to-do-if-you-have-chronic-pain-series-1-beat-yourself-up/

https://thelessonsoflyme.wordpress.com/2017/07/14/lizards-and-bunnies-and-cats-oh-my/

https://kathleenburkinshaw.wordpress.com/2017/05/03/why-did-i-choose-the-last-cherry-blossom-for-my-title/

http://www.bbhwithms.com/multiple-sclerosis-information-overload/

http://www.multipleexperiences.org/2017/07/15/what-i-would-have-done-differently-with-my-ms-diagnosis/

https://fromroopalismind.wordpress.com/2017/06/08/it-is-easier/

http://www.spinepainwarrior.co.uk/post/162956718101/coping-buying-equipment

http://www.lifeunplannedblog.com/how-to-be-less-of-a-hot-mess-and-rock-your-to-do-list/

Please like and post comments if you enjoy these posts – and for any C.I. bloggers who haven’t already, please check out The Chronic Illness Bloggers community, we are a very supportive bunch!

Claire x

 

 

 

 

MS & Memory Issues: I’ve Remembered Why I Loved This Book from Meg at BBHWITHMS Blog

This is a great book review that had me laughing from Meg, the MS blogger at BBHWITHMS.

“A month ago, I saw a post on Instagram – about a book.  A book about woman writer that is living with MS.  Something about the brief snippet included in this post grabbed my attention and I clicked over to this writer’s IG profile and read some more.  I became more and more excited about this book  – to the point that I actually headed over to Amazon and ordered it right then and there.  This might not seem like a huge, monumental thing for most, but I don’t make spontaneous purchases online, even a $16.00 one.  I just don’t.  I add things to shopping or wish lists.  I bookmark pages, I even sometimes email myself a link as a gentle reminder that I am thinking about purchasing an item.  Each thing has to be thought about, the cost calculated into my budget and then maybe, if I still feel I want or need it after a few days or weeks, I will move forward with the purchase.  I don’t just buy things willy-nilly.  Yet that particular night I did, because something about Cory Martin and her story spoke to me and I felt I had to read her book.

It arrived…and I read it… in one day…and it was everything that I had hoped it would be.  She has written the exact type of memoir that I love to read.  She is open and honest and raw but does so with a humor that resonates deep within me.  This is someone else that gets the reasons to laugh and smile at this stupid disease. ”

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Picture from Google

To read the rest of this post go here I’ve remembered why I loved this book!

#Book #Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour

Review of Roomba 630- Is it Worth the Price? from Darci at Life UnPlanned Blog

I belong to a great group for giving practical advice for Mom Bloggers – Life Unplanned – run by the lovely Darci.  She has just reviewed a cordless, robotic vacuum cleaner and it sounds great, particularly for my Spoonie pals!  I want one…..

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Picture from Life Unplanned Blog

“Are your floors a hot mess?  Do you struggle to manage your entrepreneurial duties with maintaining your home in a somewhat presentable state?  I try… lord, I try.  And I’ve found the most exciting appliance that will make you feel on your game and spoiled at the same time.  The Roomba 630 is a basic model iRobot Vacuum-Cleaning Robot.  That’s right, it’s a robot that vacuums for you!  Say what?  Hallelujah!  When I heard the concept, I just had to have one.

The Roomba has technology that navigates throughout your home, has an advanced 3-Stage cleaning system with brushes that reach into corners and suction your floors, simple one-button start, automatic dock and recharge, and vacuums over all floor surfaces including, carpet, tile, hardwood, and laminate without a glitch.

(This post contains affiliate links for your convenience.  See my full disclosure policy here.)

PERSONAL EXPERIENCE

My reason for originally trying the Roomba was that I’d had to have surgery on both hands, which made it very difficult to push a traditional vacuum.  The Roomba was gifted to me, and I’ve never looked back!……..”

FOR FULL REVIEW PLEASE GO TO LIFE UNPLANNED BLOG – ROOMBA REVIEW

Book Blog Tour – “Calling Major Tom”

This week author David M Barnett is on a blog tour to promote his wonderful book Calling Major Tom and he will be stopping by Pain Pals on Wednesday for a Q&A post!

If you have read this heart warming story and have a question or a comment then drop by – or comment here right now!

Blog-tour

Monday Magic – Inspiring Blogs for You!

Good Morning!

I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays.  So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale.  Please send me all your top tips and I will put a post together – funny tips too please!

Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house.  We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack.  Think I would be correct in saying mainly make up and bling…..she won’t be offended!  We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day.  The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes!  The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous.  I think maybe the head should have adjusted her speech….shortened it!!

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Well earned picnic at nephew’s school – featuring Grandad!

Anyway,  despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo.  But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car.  I came round on the gravel carpark floor surrounded by faces….not just those of my family!  There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!!  The school nurse was quite excited, having come to these events for years and having nothing to do.  As a fellow nurse I loved this

!

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The stunning Hornbeam Walk at the Aston Pottery

Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS.  So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you.  The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant.  This post is about living with a chronic illness as a teen.

Time for your cuppa and relaxation time with some inspiring posts! Enjoy!Monday Magic

http://alifewellred.com/embrace-the-years-with-dignity-and-beauty/

http://xofaith.com/boost-your-confidence-beyonce-edition/

http://www.fromthispointforward.com/2017/07/facing-forward-jayne.html?m=1

http://www.thepaincompanion.com/blog/dancing-through-pain-to-freedom

http://bladder-help.com/role-hormones-bladder-health/

https://itrippedoverastone.com/2017/07/07/what-my-husband-said-to-me/

https://neurodivergentrebel.com/2017/07/07/lets-talk-take-a-break/

https://picnicwithants.com/2017/07/05/floaters-and-flashers/

https://theedschronicles.com/2017/07/06/model-with-eds-uses-her-condition-to-stand-out/

 

Please remember to like posts and follow these great bloggers!

Claire x

Monday Magic – Inspirational Blogs for You!

Happy Monday, Pain Pals!

A levels finished last week for the sixth form student and that meant another end to an era marked by Prom hosted at the Queen’s Stand, Epsom Downs.  The preparations weren’t quite as intricate in our house as they were in those of friends with daughters – hair, false nails, spray tans, pencilling the eyebrows just right, different dresses for every girl…the list goes on!  A new suit was purchased along with matching tie and shoes……and he did have a haircut the day before which he says was coincidence, but I do wonder!  Anyway he scrubbed up pretty well and the Charlie’s Angel style pics are typical – the girls and the boys posed in very different ways.  I don’t understand the sticking out the bum thing that seems to have the replaced the fish pout.  Must be getting old….

Charlie's Angels

Charlie’s Angels – really?!

So only one child left at school now, and she is gutted that the student engineer is coming to live back at home for his 4th year – “I thought I was going to have the house to myself, Mum!”.  He is currently balancing the cost of living in London with the savings of moving home but living with us….not to mention us having to cope with having him back again full time.  We love him dearly, but the mess, the fussy eating, the mood swings – he is such a drama queen!!  I am well aware that I seem to be describing a toddler, who is actually 21!!

Monday MagicMy writing has been a bit non existent this week, but I have found another 10 blogs that are new to Monday Magic and I hope that you enjoy them as much as I have.  It never fails to surprise me just how many wonderful writers there are out there in the chronic community and how we all support each other.  But these posts are equally inspiring for everyone, ill or not – I love to find inspiring blogs, about different subjects, through link up parties that I might never ordinarily find.  So sit down with a cuppa and enjoy getting to know some new bloggers!

http://www.balancedespitethechaos.com/blog/new-dr

https://achronicspoonful.wordpress.com/2017/06/30/on-being-functional/

https://lennaesworld.com/2017/07/03/goal-kicking-4-years-on/

http://katethealmostgreat.com/30-things-about-living-with-pots/

https://janaowlfdesigns.blogspot.co.uk/2017/06/when-your-brain-decides-to-shutdown.html

http://herviewfromhome.com/lets-admit-that-marriage-isnt-a-fairy-tale/

http://www.bbhwithms.com/married-disease-relationship-multiple-sclerosis/

http://chronicmomlife.com/overcome-depression/

http://www.trippingonair.com/2017/06/ms-relapse-9-ways-to-survive-steroids.html

https://highrisk1.wordpress.com/2017/06/26/my-first-mania-rash/

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Image from Kate the {almost} Great blog

Hope you enjoy these posts and comment/follow for these great writers.  If you have a suggestion for an Inspiring post to be included in Monday Magic, send me a line!

Enjoy

Claire x

 

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

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