Category: Blogging

Monday Magic – Inspiring Blogs for You

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness6 Comments

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

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness2 Comments

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

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness, Ehlers Danlos Syndrome3 Comments

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.

File_000 (16) - Copy

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!

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness8 Comments

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

 

 

 

Friday Feelings with Pain Pals Blog

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness, Ehlers Danlos Syndrome, Invisible illness2 Comments

I am really pleased to have been featured on The Zebra Mom regular Friday Feelings feature. Please check it out – and the rest of her great blog! Claire x

thezebramom's avatarThe Zebra Mom

Hey there, hi there, ho there!

As it is Ehlers Danlos Syndrome Awareness Month, during the course of May, we will be reading the diary entries of EDS sufferers. Each person experiences their illness differently and I think it will be interesting to see these differences throughout the month.

This week I spoke to Claire from Pain Pals Blog. The mum of two previously worked in health care but medically retired nine years ago. She now works in the education system and enjoys Spoonie friendly hobbies.

Claire was diagnosed with hypermobile EDS at 42. She also suffers from migraines; dysautonomia/POTS, chronic nerve pain, gut problems, Raynauds, neurogenic
bladder and reactive depression. You can find Claire on Twitter, Pinterest and Instagram. 
EDS - Claire pic

“Hi, I’m Claire. I am a married mum of 2 boys aged 21 and 18, and a girl aged 14 living on borders of South London & Surrey, UK. My career was…

View original post 1,195 more words

Monday Magic – Inspiring Blogs for You!

On By Claire Saul (PainPalsBlog)In Blogging, chronic illnessLeave a comment

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

On By Claire Saul (PainPalsBlog)In Blogging, chronic illnessLeave a comment

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

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness4 Comments

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

 

 

 

 

 

Kids’ Book Review from Raisie Bay – “The Goldfish Boy”

On By Claire Saul (PainPalsBlog)In Blogging, Books! Reviews & chat..., chronic illness, mental healthLeave a comment

I found this lovely book review on “Raisie Bay My Blog, My Way” and I think that it follows on nicely from my last review covering autism.  This book is aimed at children aged 9 – 12 years old and included in the narrative is the serious anxiety related condition Obsessive Compulsive Disorder (OCD).

“I bought this book because the theme called out to me. I thought it would be a good read for my 11 and 9 yr old daughters.
There are always those kids at school that behave a little differently and are hard to be friends with. Maybe they are bullies, or maybe they are just too unlike anyone else. Maybe they are just like the main characters in this book.

The Goldfish Boy is a story about Matthew, a twelve year old boy stuck in his bedroom because of debilitating OCD. But what is OCD and why does Matthew have it? ……”

Please read the full review here: Review: The Goldfish Boy by Lisa Thompson

goldfishboy

 

Album Review: The Lonely Cry of Space & Time by Anna Coogan

On By Claire Saul (PainPalsBlog)In Blogging, chronic illness, ReviewLeave a comment

I have just read this review for an artist that I have never heard of in Hifi Pig magazine.  Not quite in character for me – usually Duncan, Mr Intimate Audio, who would be doing this – but I thought I would have a listen based on the review.  Very, very unique sound – slightly reminiscent of Kate Bush…..anyway I have ordered it for Mr Intimate Audio, so great review James Fleming at Hifi Pig!!

“The fight against ignorance is central to The Lonely Cry Of Space And Time. Combining the natural with the political, the scientific with the philosophical, and then soundtracking those themes with stirring, atmospheric electric guitar-strumming and haunting vocals is a deadly concoction.

Anna Coogan’s operatic Kate Bush-esque vocals spread the good word across The Lonely Cry Of Space And Time. A voice of reason in an era that conclusively proves that common sense is neither, Coogan’s words are a subversive and eloquent “fuck y’all.”

Underneath its sweet tones and stunning musicianship is a deep dissatisfaction with the status quo of today. The status quo appearing to be ignorance.

Both musical and cultural; here is a classically-trained opera singer armed to the teeth with an electric guitar, a record’s worth of great songs and sharp lyrical insight into the 21st century. If the top 40 sounded like this, we wouldn’t have Supreme Overlord Donald to worry about.”

Full article can be found here :Anna Coogan: The Lonely Cry of Space & Time

It has some great artwork too!!

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