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

 

 

The Grenfell tower fire: prophetic blog post from 2016 “KCTMO – Playing with fire!”

This is something very different for my blog, but as I sit here and watch the Grenfell tower block burning on television this morning, it seems important that this awful prophetic blog post is shared. I can’t comment on claims made in this post – the opinions expressed are not mine.

Grenfell Action Group

fire

It is a truly terrifying thought but the Grenfell Action Group firmly believe that only a catastrophic event will expose the ineptitude and incompetence of our landlord, the  KCTMO, and bring an end to the dangerous living conditions and neglect of health and safety legislation that they inflict upon their tenants and leaseholders. We believe that the KCTMO are an evil, unprincipled, mini-mafia who have no business to be charged with the responsibility of  looking after the every day management of large scale social housing estates and that their sordid collusion with the RBKC Council is a recipe for a future major disaster.

Unfortunately, the Grenfell Action Group have reached the conclusion that only an incident that results in serious loss of life of KCTMO residents will allow the external scrutiny to occur that will shine a light on the practices that characterise the malign governance of this non-functioning organisation…

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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

The Elastic Girl – article from Emily Jane O’Dell

I found this article on Aljazeera.com by Emily Jane O’Dell on living with Ehlers Danlos syndrome – so good to see fellow zebras thriving out there!

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Emily Jane O’Dell teaches at Sultan Qaboos University in the Sultanate of Oman.

Muscat, Oman – I am elastic girl. I’m as stretchy as they come, but I’m coming undone. My joints keep dislocating. Tendons tearing, ligaments loosening. Even my voice box is leaping out of place. What’s a girl with messed up glue to do?

“You should join the circus!” adults used to say when I showed them contortionist tricks as a child. Back then, I thought my freakish flexibility was a superpower. But my superhero dreams were dashed when I got hit by a bus while riding my bike in Harlem, learning while in recovery that I have Ehlers-Danlos Syndrome – a rare and incurable connective tissue disorder that can cause dislocating joints, rupturing organs, blindness, and even death from cardiac defects.

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I live now in awe of what the body can do, and amazed by how a soul can soldier on despite the body being so broken’ [Photo courtesy of Eddie Chu]

My limber limbs once primed me for master ballet classes with Gelsey Kirkland and All-State varsity sports titles. Reaching the highest levels of Ashtanga yoga was a breeze. But what was once a blessing has become more like a curse.

Disjointed

Dozens of times in a day, my bones would slip from their sockets – my elbows when I swim, my fingers when I type, my shoulders when I open a door. I almost choked to death on my own voice box last summer when I was swimming backstroke and my larynx ripped out of place. Left in its wake – a paralysed vocal cord.

Call me Humpty Dumpty for I am beyond repair. Though I am in need of a number of surgeries, surgeons do not dare to suture my widespread tears. The risk of cutting into my cursed cartilage and stitching up my slow-healing skin is too great. I bear many wounds that will never heal.

I landed in a hospital in Turkmenistan a few years ago after my hips tore out of place while I was researching Sufism and shamanism on the border with Iran. “Eta elastichniya deyavooshka,” the Soviet-trained doctors said in Russian – “This is an elastic girl”.

For full article go to : The Elastic Girl: Living with Ehlers Danlos Syndrome

Ready for Sleep

Sleep is difficult with chronic pain – some tips here from ItPainsMe blog

Read My Mind

I love my bed, and I love putting on my jammies, shortly after the dogs have their after dinner walk. So yes, bedtime starts right after dinner!!  Sleep is difficult when you’re in pain, but there are many things I’ve learned that help prepare me for sleep.  Falling asleep, staying asleep, waking too early are all problems. Trying to get comfortable is the hardest thing to do.

  1. Comfortable sleep wear that hits the just right temperature, not too hot or cold. Pjs that allow lots of twisting and turning! I like inexpensive tops and pants from Old Navy, they are made of  thin fabric.
  2. Bed:I use a lambswool mattress topper that is supposed to help cushion the pressure points and relieve discomfort. It was pricey but really nice. I swear I sleep better on clean sheets, too. I have spent hundreds of dollars trying almost every pillow type there is…

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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

 

A Fatal Blow over Disabled Parking

Last night we watched a repeat of the Channel 4 documentary “One Killer Punch“, which examined the phenomenon of a one punch kill.  It was very emotive and as the mother of two young adult males, I feel devastated for the four families torn apart in the first and last cases shown.  Difficult to watch and I am sure extremely hard to make, there have been calls for it to be shown in all secondary schools. Everyone will have a different and personal opinion whilst watching these young men and the families speak on film and this is in no way meant to belittle a heartbreaking subject.

Rather I want to highlight the other case which all hinged upon the right to use a disabled parking bay.  I know that this is another emotive subject that those of us on “spoonie” social media will see discussed time and time again.  How many times is someone judged from the way they look as to whether they are worthy of that bay?

imageIn this heartbreaking incident, a man died because another judged that he was not in need of this parking space in a supermarket car park.  The attacker saw a gentleman walking out to place some goods in his car and, because he wanted the spot for himself and his disabled wife and he deemed the other unworthy of parking there, he got out of his car and hit the gentleman.  He didn’t stop to notice the blue badge sitting on the dashboard, or the name on it that showed it belonged to the gent’s wife.  He didn’t wait to hear that the lady was still in the store and suffers with rheumatoid arthritis.  Instead with one punch he floored a stranger and then calmly got back into his vehicle when he “heard his head crack on the ground” and drove home.

Several hours later a distraught family had to make the decision to turn off life support and another family suffers as a member is sent to jail.  What a senseless waste of a life.

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I know that there are some people out there who use relatives blue badges/disabled permits illegally, but I would like to think that they are in the minority.  In the UK being issued with a blue badge is no easy task now, and I’m sure that it is equally difficult elsewhere. I would  like to say to everyone please don’t be too quick to judge someone who doesn’t look “disabled” using a disabled parking bay – we are all different and our needs can vary from minute to minute.  Believe me, I would rather be skipping the length of the high street than needing to use a stick and wheelchair to enable me to park closer to that shop!

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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#

 

 

 

Bank Holiday Monday humour: I Should Have Googled how to Play Soccer

This is so funny that I have to share it with you – just as Sick Christine shared it with me.  Hot Mess Memoir you have really cheered my day…..

 

I Should Have Googled How To Play Soccer

I can barely move my legs; they hurt so bad. This is somewhat of a wake up call that I need to A. continue my diet and B. exercise. Tonight was our parents vs. kids soccer game with my 8 year old-C. I decided to go all out so I hit the thrift store yesterday and scored an old-school pair of shorts and an Ohio State Soccer t-shirt for $4.50. I finished off the look with a thick white headband from The Walmart.

The Soccer Game

hot mess soccerAfter arriving at the field, I asked my friend to take this picture. Do you like it?

Find the rest of the post here: I should have googled how to play soccer

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