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

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

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 Magic

The children of the UK have returned to school after half term, which should have been a week of fun and rest (and revision for the older ones!) – sadly it ended with another devastating terrorist attack which has seen more innocent lives destroyed, and yet more fighting for life across our capital’s major hospitals.

As a professional patient, and in a previous life a medical professional, I have been both a patient and worked in some of these hospitals – I was born in south London and lived in central London during my early nursing days.  My most recent in patient stays have been in Guys hospital, situated next to London bridge the site of the attack on Saturday night.  Being able to picture the streets where an atrocity has happened makes it so much more real – I am sure Mancunians will understand this too.  We spent a day in London last week whilst our 18 and 14 year old went to see the Harry Potter show.  Security was tight at the theatre, as you would expect, but it was lovely to see so many families out and enjoying a beautiful day on the South Bank – it is easy to say that we won’t allow terrorists to stop our normal life, but to actually make sure that we carry on is not always so easy.

Last night the young American singer, Ariana Grande, hosted a benefits concert in Manchester, watched by approx 14 million on the television.  I knew very little about this young lady, but I take my hat off to her for what she and her management team have achieved in the last week.  She was criticised in some parts of the press for “running away”, and then for arranging a benefit too quickly – I think that whatever she did she would be damned by someone.  But having been in an awful situation along with her fans, she used her fame and contacts to do something good…..there were lots of tears in Old Trafford last night, but lots of laughter, fun and inspiration too.

Speaking of inspiration, I am still finding fantastic different blogs from the Chronic Illness Bloggers community to share with you.  If you have followed this regular feature, you know the drill….make yourself a cuppa, settle down and enjoy some great posts from some inspirational people!

https://itpainsmeblog.wordpress.com/2017/05/21/using-distraction-to-heal/

https://medicallyodd.com/blogbreathemia/

https://primaryimmunepatientsunited.com/orphans-of-the-ahca/

https://charlottedebs.com/2017/06/02/footwear-friday-week-1/

http://www.nataliemabbott.com/choose-kind-kinda/

https://treasuresonthesand.com/2017/05/29/stress-a-chronic-pain-warriors-worst-enemy/

https://arkaysthoughts.com/2017/05/23/different-weird-alien/

http://oneticktobesick.blogspot.co.uk/2017/05/lyme-disease-awareness-month-check.html

http://www.whentaniatalks.com/browhaus-classic-brow-lead-review/

http://www.chronicandblessed.com/ditching-sugar/

Enjoy and please like or comment on the posts!

Claire x

 

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

 

 

 

Living with Ehlers Danlos Syndrome – film for #EDSAwarenessMonth

I am really pleased to have contributed, in a small and rather quiet way, to this video that Jenni has put together for EDS Awareness month.  Jenni is a vlogger/blogger and goes by the name 1nvisibl3Girl – please have a look at her channel & blog and the social media sites of the other great (very young!!) EDSers on this short film!!

“This video is all about living with Ehlers Danlos syndrome (EDS) as the zebras I have been lucky enough to get to know, and I, share our own experience of this chronic, invisible illness. We talk about what EDS is to us, how we manage our symptoms, how EDS has changed our lives, why we started our own EDS based blog or vlog and our hopes and dreams for the future. We hope this is shared as much as possible this May as it is #EDSawarenessmonth so people can learn what it is really like to live with EDS but also to support those also living with the disease. I know it is long but please watch it all if you can. There are some amazing people describing some very difficult things in their own words. This is a project I am very proud of.” Jenni Pettican

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

 

 

 

 

 

Monday Magic- Inspiring Blogs for You

Hello!  I hope that everyone is enjoying a fantastic Easter  long weekend.  I am still finding new blogs to share with you from the Chronic Illness Bloggers group and this week we have a mixture from art to crafts to our loved ones.  So go make yourself a cuppa, pull up a seat and enjoy getting to know some more fantastic inspiring people,

Claire x

Monday Magic

  1.  http://thethyroiddamsel.com/autoimmune-diseases/losing-friends-and-alienating-people/
  2. https://chronicallycomposed.wordpress.com/2017/04/14/knitter-natter/
  3. https://illness-to-wellness.com/2017/04/15/what-to-say-when-someone-doesnt-know-what-to-say-in-response-to-your-suffering/
  4. http://superpooped.blogspot.co.uk/2017/04/spoonies-artist-problems.html?m=1
  5. http://mysurvivalcollective.com/thank-you-for-my-chronic-condition
  6. https://www.consciouscrafties.com/dealing-with-a-large-order/
  7. https://thegirlwiththefiveladsandfibro.blogspot.co.uk/
  8. http://mystripylife.blogspot.co.uk/2017/02/9-reasons-school-causes-stress-eds-cmt.html
  9. http://countingmyspoons.com/2017/04/when-your-partner-is-struggling-with-chronic-illness-and-pushing-you-away/
  10. http://fedupwithfatigue.com/april-14-2017-fibromyalgia-news/

 

bouquet-677939_960_720

Beautiful picture from Ness’s post on The Girl with the Five Lads and Fibro

Monday Magic – Inspiring Blogs for You

Monday Magic

 

Good evening and apologies for the delay in today’s MONDAY MAGIC.  I have been otherwise engaged in Accident and Emergency following a Potsie faint yesterday afternoon – my Smart crutches held onto my arms as I fell leaving me with dislocated shoulders, elbow alongside a hip, knee and ankle.  One shoulder was not playing ball and by this morning my hand was swollen and resembling navy cottage cheese, my neck and pec muscles were in spasm and my arm was twitching like a paper fortune telling fish.

An xray confirmed what we already knew – and more as it was a particularly “odd” dislocation according to the consultant.  A dose of IV fentanyl & paracetamol, midazolam to relax the muscles and knock me out and 2 burly doctors did the trick.  We did smile though when told to go back to fracture clinic in 10 days – it will be out several times by then!  Feel like I’ve been hit by a truck tonight – I hurt so many bits in the grand collapse that Duncan is banning all walks now!!

This week’s blogs for you to get your teeth into are:

  1. http://www.ggmandy.com/2017/04/07/life-interruption/
  2. https://morespoons.com/time-change-physician-done-part/
  3. http://www.fibrofantastic.com/yogaforfibromyalgia/
  4. http://girlinhealing.com/carrot-cake-w-cream-cheese-frosting-grain-refined-sugar-free-dairy-free-option/
  5. http://asouthernceliac.com/chronic-coffee-chat-living-grace/
  6. https://medium.com/@KirstenSchultz/a-roundup-of-posts-against-autism-speaks-5dbf7f8cfcc6
  7. https://robertmgoldstein.com/2017/04/09/broken/
  8. http://edsjour.blogspot.co.uk/2017/04/health-update-blogging-from-my-hospital.html
  9. http://www.thisspooniespeaks.com/2017/04/my-experience-with-liberty-lotion.html
  10. http://itoldyouiwassick.info/2017/04/10/how-accessible-is-the-internet-for-people-with-disabilities-infographic/SONY DSC