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

 

 

 

 

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

 

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

 

 

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

Monday Magic – Inspiring Blogs for You!

Monday Magic

I have found myself reading a lot of new blogs and posts recently – many that I have found through link /meet & greet parties and others through connecting on instagram, twitter etc!  It just strikes me what talented people are out there and also some pretty fantastic writers too.  Some of your poetry has blown me away.

So this week I have some very new bloggers to introduce you to along with some well established, but new to me, sites.  I hope that some of you newbies will consider looking up the Chronic Illness Bloggers network and joining us – we are a friendly bunch who communicate mainly on our members facebook page!  Details here : How to join Chronic Illness Bloggers.

So once again, grab a cuppa, put your feet up and enjoy some great posts – please remember to comment and share if you enjoy them,

Claire x

 

http://iwendy.ca/2017/05/17/hello-world/

https://3sistersabroad.wordpress.com/

https://fibrowarroir.wordpress.com/2017/05/11/life-then-life-now/

https://courtneymmorgan.wordpress.com/2017/05/21/week-one/

https://mywalkinthewoods.wordpress.com/

http://www.multipleexperiences.org/2017/05/19/this-is-jamie-the-raw-and-uncut-version/

https://highwaytohealingblog.wordpress.com/2017/05/14/named-remarkable-traveler-by-weigh-out-wander/

https://morespoons.com/chronic-talk-episode-2-mental-health-awareness-month-mother-schizophrenia/

http://www.abreak4mommy.com/2017/04/myobuddy-massager-pro-review/

http://sweatpantsandcoffee.com/sweatpants-self-care-8-tips-to-help-you-thrive-while-living-with-constant-fatigue/

Puerto-Vallarta

Puerto Vallarta – photo taken by Kirstin Larkin, HIGHWAY TO HEALING BLOG

 

 

 

Monday Magic – Inspiring Blogs for You!

Monday MagicTime for some Monday Magic!  I hope that you have all had a great weekend – I think it was Mothers’ Day in the USA, so hope all you mums were spoilt rotten.  I was asked by Evie, the lovely Zebra Mom, to take a selfie wearing red and to post it to spread the word about Vascular Ehlers Danlos Disease.  We had a very rare moment in our house and I managed to persuade everyone to do a selfie…all 5 of us in one shot!!

vEDS selfie

I am delighted to be still be finding different blogs from the Chronic Illness Bloggers community to introduce here – please remember that just because we are chronically ill doesn’t mean that we don’t blog about other things too!  So sit back with a cuppa and enjoy exploring some great blog reads with me….

https://asmyjointsturn.wordpress.com/2017/05/14/i-preexist-therefore-i-am/

http://brainlessblogger.blogspot.co.uk/2017/05/fibromyalgia-awareness-day-things-i.html

http://moonglotexas.com/2017/05/13/book-review-sweetbriar-cottage-by-denise-hunter/

http://gettingclosertomyself.blogspot.co.uk/2017/05/i-lead-good-life-and-im-not-burning.html?m=1

http://zebrawrites.com/2017/05/06/edsawarenessmonth-blog-challenge/

https://snowflakesandspoons.blogspot.co.uk/2017/05/myasthenia-gravis-and-pregnancy.html

http://www.stopget.org/2017/05/290/

https://findinglifessilversun.wordpress.com/2017/05/08/when-how-dan-became-my-caretaker/

https://veronicalhill18.wordpress.com/2017/05/10/setbacks-and-feeling-broken/

http://stillgotanopinion.blogspot.co.uk/2017/05/the-wolf-and-black-dog.html

EDS-Awareness-Month

Picture from ZebraWrites post

 

 

Monday Magic – Inspiring Blogs for You

Good morning and welcome to another Monday Magic with some more great inspiring blog posts for you.  I have just returned from a GP appointment and my head is spinning with the various specialist appointments I have on the agenda….endocrinology this week, cardiology, rheumatology, hip x ray and then orthopaedics…..

This is without the referrals for the kids!  University College, London where I was diagnosed no longer accept direct referrals so the kids need to be referred by another consultant.  Initially this was to be a paediatrician, but the A level student has turned 18 and the paediatric department decided that they really don’t know enough about EDS to take my lovely girl on, so she has been referred to a paediatric geneticist.  We are going to try to get an appointment for my son with the same rheumatologist that I see…….I think that we just have to go with the saying “don’t hold your breath”!

Monday Magic

So I am going to sit down with a coffee and enjoy some tips, some yoga and some stories from some of my fellow chronic illness bloggers – if you look and listen really hard, you might spot yours truly in the You tube film from Invisible Girl!!

https://1nvisibl3girl.wordpress.com/2017/05/05/living-with-ehlers-danlos-syndrome-edsawarenessmonth/

https://howtogeton.wordpress.com/2017/05/07/how-to-answer-15-tricky-disability-questions/

http://www.satonmybutt.co.uk/more-flare-ups-than-good-days/

https://www.notaballerina.com/2017/05/travel-disability-chronic-illness-episode-53-thoughtful-travel-podcast.html

https://brainlesionandme.com/2017/05/07/self-care-happy-distraction/

http://www.health-hats.com/golden-rule/

https://weartearandcare.com/2017/05/02/meeting-the-neurometrix-team-and-seeing-the-quell-up-close/

http://glasshalffull.online/accessible-yoga-for-all/

http://dystonialiving.blogspot.co.uk/2017/05/my-4-favorite-self-help-tools-for-pain.html

http://www.makeitbakeitfakeit.com/2017/05/my-body-my-prison-my-life-with-mecfs.html

http://upbeatliving.net/downsizing-emotional-work-tips/

http://dadhasaheadache.com/2017/03/22/shattered-dishes/

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