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 – 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Claire x

 

 

 

Monday Magic – Inspiring Blogs for You!

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

Monday Magic

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

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

miles-for-migraine-logo-small-89x120

 

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……

Love-your-body-e1496630172878

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 MagicWe are all here in the UK, after a very difficult week, enjoying another bank holiday Monday.  I don’t want to write anything other than our thoughts and love are with everyone in Manchester.

This week the youngest household zebra has been away on a German exchange trip and has had the most fantastic time.  I must give so much credit and thanks to the staff and her host families – particularly for quietly acknowledging that her joint and pain problems might impact upon some of the visits.  I think that the visit to caves involved a serious number of steps!!  She has returned on a high, despite having her bag & mobile phone stolen, and the whole group of English and German teens are still chatting constantly on a group chat (you can imagine – “how quickly can I get a new sim card, dad??”)…..watch out for the return visits in October.

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Today also marks the last Monday in May and so the last in Ehlers Danlos Awareness month.  I am shamelessly going to share posts and sites that are all from people affected in some way by EDS – from Vlogs on Youtube, to an author to beauty blogs.

For a little Monday Magic, make a cuppa, sit back and enjoy!  Please remember to like, share and comment to make someone’s day!

https://www.facebook.com/search/top/?q=lara%20bloom%20eds# – this appeared on Sky News 28/05/17

http://mystripylife.com/2017/05/zebraday-2017/#more-7973

https://ribbonrx.com/2017/05/26/the-unpredictability-of-pots/

http://www.hospitalprincess.com/2017/05/this-is-what-ehlers-danlos-syndrome-is.html

http://www.edsneeds.com/spoonie-press/2017/5/27/mylifeinzebrastripes

http://caitlinswish.com/

https://spooniecentralbeautyandfashion.wordpress.com/about/

http://www.potsuk.org/stories/54

https://www.facebook.com/sherry.selfe.pro?hc_ref=PAGES_TIMELINE#

 

 

 

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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Monday Magic – Inspiring Blogs for You

Monday Magic

 

Happy May Day! Can’t quite believe we are already in May – or that the weather here in the south of England has been more like January than late April.  Duncan has been away with year 5 (9-10 year olds) on an activity week and has returned absolutely shattered and full of cold, and the rest of the household is supposed to be revising this bright bank holiday!  Engineering third year exams begin this week, A level English lit course work is due in tomorrow and the youngest has to finish her art portfolio and complete an art exam tomorrow.  The house is a mess!!

So what better way for me…and you…to get away from the stresses of the household than with a cuppa and some more inspiring blog posts from the CIB community.  This week I have included something about EDS awareness, as a zebra myself, and also be sure to check out #ProjChronicWisdom and #May12BlogBomb.  Enjoy!!

eds awareness

http://www.thisspooniespeaks.com/2017/04/eds-awareness-month-blog-challenge.html

http://sallyjustme.blogspot.co.uk/2017/04/may12blogbomb.html

http://chronicallyroyal.blogspot.co.uk/2017/04/what-educational-establishments-need-to.html?m=1

https://imsickandsoareyou.com/2017/05/01/where-nobody-knows-your-name/

http://www.achronicvoice.com/2017/04/29/projchronicwisdom-motivation-tips/

http://www.alihemsley.com/blog/2017/4/27/opening-up-about-mental-health

https://www.ecofluffymama.com/2017/05/medical-professionals-refuse-testing/

http://painlovehope.com/four-months-since-major-back-surgery-now/

https://smilesinthetrials.wordpress.com/2017/04/27/the-spring-standoff-is-over/

http://www.mecfsselfhelpguru.com/2017/04/how-to-be-more-effective-with-your-self-care.html

 

Claire x