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

 

 

 

 

Normal or Difficult Problem? All depends which specialist I see……..the joy of chronic illness!

I had a Personal Independence Payment medical review this week (more of that another time!). My GP had requested a home visit, mainly as my dysautonomia/fainting is so much worse, but I was merely given another appointment a little nearer to home.  As it seemed near impossible to tie up the DWP who would have received the letter, with the review service (formerly known as ATOS) we decided between us that Duncan would try to get me there, but the GP was adamant not without all the letters that she had been sent recently.  Half a tree later we left her surgery – and this was just the correspondence since the beginning of the year.

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PAIN PALS BLOG

The day after the assessment, I received a copy of the letter dictated by my new rheumatologist to my GP.  Lovely man, but the person who he describes in this letter doesn’t appear to be me.  In fact she is completely at odds to the lady described a month earlier by the orthopaedic consultant, after a dislocation that required a trip to A&E!  The history of my shoulder pain was wrong, and apparently I have “a reasonable range of movement” …”with some discomfort” – ahem, I am hypermobile with very stretched ligaments & tendons so everything moves in every direction and I was actually referred for PAIN management.  Apparently my “other joints are normal” and I “really know how to manage my hypermobility syndrome”.

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Image saved from Pinterest

The ortho consultant said “she has been having pain in that shoulder for some time and was seen by my colleague 2 years ago…” and “on examining her shoulder it moves through a reduced range and her x rays show progressive glenohumeral joint arthritis, with a marked difference from 2 years ago”.  He goes on to say “Unfortunately Claire has a very difficult problem to solve. She has EDS….& has developed arthropathy within the glenohumeral joint”.  I was told 2 years ago that if I were 30 years older I would be whisked in for a shoulder replacement……this time the consultant could see a huge deterioration on x ray, but again explained that a shoulder replacement with my EDS is just not really an option as my ligaments & cartilages are so stretched.  A shoulder replacement would not stand up to recurrent dislocations!

So, the thing that the two specialists agree is that I have a really good knowledge of EDS and both do recommend conservative treatment with physiotherapy – again!  The physio with expertise in hypermobility syndromes who the rheumatologist recommends is out of area; my old physio who works with the ortho consultant is no longer able to see me on the NHS as he is a Consultant physio……..

This is the reality of a condition that affects multiple body systems with no one person leading the care!  So now the search for a physio, who understands that I can’t be “fixed” but need ongoing rehab,  is ON!!!

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 – 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!

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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

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/

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

 

 

 

Adrenal Fatigue – Pin review from Cathy, Ty Siriol Ceramics & Crafts

Cathy at Ty Siriol Ceramics and Crafts recently posted a short review for this book on pinterest which I thought I would share with you.

The “blurb” from Amazon reads “This is an incredibly informative and reader-friendly book about a common debilitating medical condition that goes largely undiagnosed and untreated. ADRENAL FATIGUE: The 21st Century Stress Syndrome is a very empowering work cram-packed with vital information about a condition that very likely affects millions of people”

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Cathy writes “I’ve recently read this book to try to get to the bottom of why I’m so exhausted, among other things. It’s a really good read and helps you to assess if this could be a problem for you as well as giving really thorough advice….” Remainder of her short review is here:

http://pin.it/tyWipX2

On Amazon the book has received 151 reviews with an average 4.5 stars out of 5.

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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