The Blessed Project

Flicking through the blog posts on the blog share threads last weekend (Big Up Your Blog), one from Susie Lindau’s Wild Ride leapt off the page at me.  She has invited bloggers to join her in a very special, positive experience – The Blessed Project.

Susie says “Last year, I posted a list of blessings and included a few photos. The exercise took me to a place in my heart filled with love, gratitude, happiness, and sparkly things. My favorite! For the time it took to create the list, it banished bad news, headlines, and normal everyday frustrations like surfing to buy the perfect gift which is as slippery as Elf on a Shelf.”  What could possible be better at this time of the year than to focus on blessings…and some photos to embarrass your kids??

So where shall I start?

My family naturally…..hubby Duncan puts up with a lot, particularly on those flare days when I am horrible to be around, but he is always there.  He spends half his life running me to different hospitals across London and never (well almost never) complains and is always there to pick up the pieces – or just to pick me up!!

The kids…..it is challenging having the student engineer living back at home after 3 years away and my kitchen is living proof, but he is getting better at catching me before I pass out.  The middle one – do all middle children play on the old adage that middle borns have such a tough time? – is due home from uni next weekend and it will be lovely to see him (I think – dirty washing???).  We haven’t heard much from him, but presume that is a good thing – although he does send regular pics to his sister.  Finally my baby – my lovely girl.  She drives me mad with her untidiness, but she looks after me over and above what a teen should have to do for her mum – and constantly plays down the fact that she also has the same condition.

My parents – they live up the road and without them our lives would be so much harder on so many levels. Thank you, Mum & Dad!

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Their first and only selfie!

My wheelchair – yes really!  It has given me a new lease of life as my mobility has decreased and pain has increased.  I have spent the last few years struggling to maintain some independence and to walk.  But the back pain initially and then the disabling effects of 2 back fusions (they really did add to my problems) and more hip dislocations have led to first funky walking sticks, then Smart crutches and now my wheels.  Not what I wanted during my 40s, but I can go out and join in! My eldest plans on taking me ice skating in it but I didn’t like the wicked glint in his eye when he suggested it!!

Friends who don’t give up on me when I blow them out, who stick by me and let me feel like the woman I used to be.  I also am very blessed to have a whole virtual friends family – bloggers and the chronic illness community who give such support and friendship…and “get it”!  Meeting with online Book Club friends at our annual birthday party was a treat.

I feel blessed to have found some kindred spirits this year at our EDS UK support group.

My furry friends – we have been blessed with some extra time with our elderly mutt, Sam, due to an understanding vet and painkillers (yes, for the dog!); but also our surrogate dogs, Chester who I love like my own, and Prince – both come round every week for walks with hubby and cuddles with me!

Samson

Samson

30 years on – meeting up with old school friends and feeling the years just slip away.  Hopefully staying in touch….have already met up with one and his family.Class of 87 pic

Finally….staying with the old school theme, I feel very blessed as the Chair of our alumni committee to have been invited to some wonderful events (Henley, the school drama) including the beautiful Carol Service last night in the parish church.  Talking to some of the parents and staff after, over mulled wine and mince pies, we all said that whether we were religious or not, it was a lovely way to start Christmas proper – putting aside the commercialism for just a short time and enjoying some true Christmas spirit.  There just might be a bit more of this spirit at the pub next week when I go to the One Term On event, for the youngsters returning after their first term at university…..won’t be staying too long as this old bird might really cramp their style!!!

 

Why don’t you link up your blessings with Susie?

Join the Blessed Project and Get Featured!

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Monday Magic – Inspiring Blogs for You!

Another week has flown by, there have been yet more storms – why did ours in the UK get the name Brian? – more Brexit and the increasing #MeToo campaign.  In our house we saw the end of the German exchange as our lovely girl and her friends’ student partners returned home.  Absolutely exhausted!  The girls are now coming down off a high and the start of half term is a bit of an anticlimax, particularly with mock exams looming.

Our girl is studying art – you probably know already as this proud mum has posted pictures, much to the disgust of my girl – and has a portfolio to work on and also a sketchbook for an interview.  The house is destined to filled with paints, charcoals, paper and panic!  I am doing something this week that I don’t normally, but I’d like to shamelessly introduce you to some other talented youngsters – the triplet daughters of an old school friend.

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Art By Three

They have  been featured on Sky Landscape Artist of the Year, and are currently working with the UK’s National Trust on the Scotney Old Castle campaign. Whilst not strictly a blog post, I have included both their website and the campaign site as I strongly believe we should support and nurture young talent – I am not asking you to donate but to take a peek, maybe follow them on Facebook and Instagram…..

The other posts are all fantastic and range from an article that fits with the #MeToo campaign but stems from a personal story of surviving from Illness to Wellness, to acupuncture at My Migraine Life to social well being from a new blog to me Little Adventures NZ.  There are a couple here that are particularly great reads for you ladies – I love the look at Envy on Wendy Fairy Art – and all you mums and dads must read “My Husband Doesn’t Help” from the Coffee Mom.  It is not what you think it is!!!  Add in some OCD at The Thyroid Damsel and what more diversity could you want?!

So it is that time to grab a cuppa, turn your mobile to silent and spoil yourself with some great reads.  Please comment, share and follow some of these lovely people if you enjoy their work.

https://www.jumblebee.co.uk/scotneyoldcastle1010campaignwithartbythree

http://www.artbythree.co.uk/

https://littleadventuresnz.com/puzzle-piece-series-social-well-being/

https://wendyfairyart.com/fairieartblog/sistership-wound-called-envy-deal/

 

https://www.thecoffeemom.net/2017/10/20/husband-doesnt-help/

http://notebooksandglasses.com/sitting-disability/

http://coffeeandcarpool.com/be-less-stressed-as-a-special-needs-mom/

http://thethyroiddamsel.com/?p=310

https://mymigrainelife.wordpress.com/2017/10/22/does-acupuncture-work-for-migraine/

https://illness-to-wellness.com/2017/04/07/showing-up-for-sexual-assault-survivors/

https://thepainfreelife.com/life-interrupted/the-death-of-a-marriage-the-year-that-changed-everything-part-1/

Have a great week,

Claire x

Monday Magic - Inspiring Blogs for You! 23 Oct

 

 

 

 

My first forays with Motability

A little while ago I mentioned my face to face medical review for my Personal Independence Payment and I had convinced myself that my standard rate would be reduced to nothing.  I was geared up to go to panel and fight my corner, sitting here awaiting that dreaded brown envelope.  When it did flop through the letterbox, I couldn’t even open it, I felt that sick!  Duncan did the honours…..and I was stunned and delighted in equal measure to find that I have been awarded the enhanced rate for both mobility and care needs.Motability Forays

Of course I should be on this rate as my health has deteriorated so much in the last couple of years, with Ehlers Danlos zebras galloping at full pelt through my life.  But the system is such that the applicant is made to feel they need to prove that they can’t jump through those hoops the DWP want us to.  Anyway it has taken a couple of weeks to sink in, and to investigate the benefits to using the Motability Scheme  – “The Motability Scheme enables disabled people to get mobile by exchanging their mobility allowance to lease a new car, scooter or powered wheelchair“. Last week Duncan suggested a trip to Peterborough – which initially didn’t thrill me – but it was actually to a Motability show….again probably not my first choice for a day out!  But I arranged the impromptu visit to our friends that I wrote about on Monday Magic, and this would mean only driving one way on the day so off we went.

I must explain that Duncan used to work in the motor trade, so our car has always just turned up, sometimes been sold, often changed at a minute’s notice, but I have never really had anything to do with choosing a car.  Of course this time our needs are very different and actually it was very helpful having many of the manufacturers who take part in the scheme under one roof.  The volunteers for the Motability charity couldn’t have been more helpful and there were plenty of them handing out goody bags full of useful information.

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The exhibitors included motor manufacturers, mobility scooters & electric wheelchairs, and companies who adapt the vehicles to your needs.  We were able to book a test drive – although only in one vehicle as slots were limited and had been booked up by lunchtime.  For us the real value was trying the vehicles for size without trudging from one showroom to another, and I have to admit that I hadn’t realized just how difficult it would be to find a car boot that would accommodate the wheelchair alongside shopping bags for those retail therapy moments, or a dog!

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Boot mounted wheelchair/scooter lift in action

The MPV type vehicles that don’t require a large down payment just did not give us enough boot space, and we actually could not fit the wheelchair into one jeep  – it is important to remember that this car is not yours, it is effectively a leasing agreement albeit an excellent one, so long as you don’t spend out too much in the first place as the car is handed back after 3 years.

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Ramp adaptation for wheelchairs & scooters

However the sky is the limit and if you want to put down a large payment intitially, it is possible to have a plush car with all the trimmings – all down to personal taste & finance.IMG_20170909_133122830

Having said this, we discovered that there are some excellent deals with some requiring little or no down payment for a really great car.  The show definitely helped us to understand what we didn’t want/need and has ultimately this week helped us to choose and order a car that fits my needs on the scheme.  With my back problems and the spinal cord stimulator, the seat position and shape is the most important thing – particularly the headrest.  The electrode in my back which helps to control my chronic pain is very positional, so I only have to have a headrest in a car or the cinema push my neck forward, and Bang! the scs might IMG_20170909_133108400just as well be turned off as I can no longer feel it.

Sadly the downside is that when my new shiny, estate car (yes, an estate that accommodates my wheels, my shopping and the dog!) arrives, I currently can’t drive it!

 

Little post script……I saw a couple of great looking electric scooters too.  My fave was the Genny, but at £16k it is just not going to happen; but I wonder if any of you out there have this nifty little number – the Go Chair ?IMG_20170909_161956070_HDR

Monday Magic – Inspiring Blogs for You!

Monday Magic

Good Morning, all!  Hope that those of you enjoying a Bank Holiday are having a fantastic day, and that everyone else has had a great weekend!

The weather is beautiful here and we have a family BBQ planned for later in the day – coincidental, but it just happens to be my parents 52nd wedding anniversary.  Dad would tell you that he would get less for a life sentence!!

A very good friend contacted me earlier in the week with the sad news that her mum had died.  She has been living in a nursing home for several years now and has gradually deteriorated, but in recent weeks she took a turn for the worse with a bad chest infection and just wasn’t strong enough to fight it. This week has been very hard for my friend, her brother & sister, and particularly her dad.  They had been married over 60 years.  It struck me that no matter how old or how sick a loved one is, the sense of loss at a death just can’t be anticipated.

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Beautiful bank holiday Monday!

When I received that message my own mum was here and I should probably point out that we have a great relationship.  She has been staying with me whilst the family have been away and has effectively been my carer again! Talk about turning the clock back, becoming the child again.  I felt so dependent physically and even a short car journey left me struggling, but it never fails to amaze me how that parent/child psychological bond is always there.  No matter how old you are,  it is always possible to feel like a teen again! A naughty teen at times!  Seriously though, thanks mum, I couldn’t have managed without you.

This week I have been able to spend time finding new groups and meeting new bloggers online.  So the inspiring blog posts I have for you are from a mixture of sources – one of them being the Facebook group Big Up Your Blog! – run by Suzie from “Suzie Speaks”.  I have included her post about self censorship on our blogs – it is something all bloggers should read, no matter what your content matter. I think that I have probably failed miserably on all counts!!  There is also a beautiful poem about a relationship break up, the role we play ins supporting new mothers emotionally and a shout out for a new disability campaign for parents later this year.

So as usual, grab a coffee, sit back and enjoy…..

https://suzie81speaks.com/2017/07/08/should-you-self-censor-your-personal-blog/

https://fancypaperblog.wordpress.com/2017/08/22/mental-health-be-kinder-to-new-mothers/?fref=gc

https://iwillnotliveinvain.wordpress.com/2017/08/26/vaguely-nauseated/

https://mindovermetablog.wordpress.com/2017/02/22/why-its-sometimes-good-to-look-back/

https://jellified.wordpress.com/2017/08/25/from-the-start/

https://addandsomuchmore.com/about-the-name-add/

https://nolightwithoutdarkness.com/2017/08/23/when-your-mental-health-affects-your-job/

https://fibromyalgia-chronic-pain.blogspot.co.uk/2017/01/to-reduce-stress-and-pain-in-your-hands.html

https://cfsmeandkingdomliving.wordpress.com/2017/08/27/redefining-the-dark/

http://blossomandcompany.co.uk/italkdisability-campaign/

Please remember to comment, check out other posts on these blogs and find a new writer to follow,

Claire x

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Models of Diversity – Challenging Stereotypes

I recently came across this young lady Selina Towers and was initially drawn to her story as she lives with the same genetic condition that I have.  When I read a little more I couldn’t help but be struck by her zest for life and her desire to raise awareness of the beauty of all body types…..

Only this morning BBC Breakfast covered the story of former Vogue editor Alexandra Shulman who has this week posted a selfie wearing a bikini.  No great shocks there, except that the picture is unfiltered and Ms Shulman aged 59 looks like any middle aged lady on her hols – or rather she does not resemble an airbrushed model.  Do these “perfect” images often published on social media influence the body image of those viewing them?  Last week actress Kate Beckinsale spoke about giving positive advice to her daughter on body image and the importance of not trying to live up to an impossible stereotype. In Australia a new campaign targeting parents of pre school age girls, aims to celebrate body shape and size diversity, celebrate skills and personality traits, as well as teaching parents healthy language around food and bodies.

In this article Selina looks at disability within the modelling and fashion world, and how disabled models could challenge stereotypes, if given a chance.

Are Disabled Only Runways A Good Way To Showcase Disabled Models?

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Selina Towers – photo from Models of Diversity

A year ago, I wouldn’t really have thought about it, I would have just thought it was an absolutely brilliant thing bringing to light the beautiful disabled models that we rarely see on the runway but then, I didn’t truly understand how it felt from a disabled person’s point of view.

I was born with a condition called Ehlers-Danlos Syndrome which didn’t start to really affect me until I was around 10 years old, but even then it was only the odd dislocation here and there. Although it did affect my every day life and limited what I could do, I didn’t really consider myself as having a disability, just some fairly cool party tricks where I could bend bits of me that really shouldn’t bend that far! However last year, I had an unfortunate bout of flare ups with unfortunately led to me having to become reliant on a wheelchair.

For the full article go to Models of Diversity

Chronic pain, opiates…& where does that leave me? (Part 2)

continuing from yesterday’s republished post, this is the follow up written at the time with a few additions and adjustments for today…..

So where does this leave me?  I am the person sitting in that seat desperately in need of help.  This “me” refers to all of us experiencing chronic pain whatever the reason – pain that has lasted for longer than 12 weeks – 6 months depending upon who you read!

From that first visit to our general practitioner to the physio to the surgeon, it can feel like everyone is giving conflicting advice.  I don’t blame the GPs for starting so many of us on opiates.  When the gabapentin or lyrica isn’t sufficient, and the amitryptilline doesn’t touch the sides, there isn’t much else left to turn to when this desperate individual is begging for help. images (20) In the same way, how many of us have surgery out of desperation?  I am sure that the neurosurgeon who performed my first fusion really didn’t know what else to do with this weeping woman on his consulting room floor, declaring she couldn’t take any more!  I don’t think that anyone takes these drugs lightly as the side effects can be so debilitating and vary from person to person.  The consultant from my last job prescribed my first cocktail and I never dreamt that I would be taking them for so long or quite how they would affect me.

We’re prescribed tramadol, sevredol, oromorph, MST, oxynorm/contin, and at first there is usually some relief.  For me the drugs never completely masked the pain and the dose of pregabalin was soon topping the scale and the oxynorm started creeping upwards soon to be replaced with the long acting variety.  I smile now when I think how at work the “control” drugs are kept in double locked cupboards and yet my bottle of oxynorm was stuck on the kitchen window sill to take a quick swig when the pain became too much.  My GP never tried to limit amounts and gradually increased the dose over the years.  I had also been prescribed mirtazepine to take at night – another antidepressant drug prescribed by my old consultant.  The side effects were horrendous.  I tossed and turned all night yet was unable to function the next morning to the extent that I knew the kids were in the room, but I couldn’t open my eyes.  Eventually I weaned myself off. But at my very first appointment at St Thomas’ Dr P took one look at my meds and informed me that the opiates would have to be reduced.  Yes, he did explain why with the reasons from part 1, but I think that everything that came after was a blank.  There is a feeling of panic – how on earth will I cope with less than I am taking?  This isn’t even working!  A fear deep in the pit of your stomach as the realisation that you may be forced to try to tolerate higher levels of pain hits home.images (21)

St Thomas’ hospital, London, policy for patients on the spinal cord stimulator programme is that you should not be taking any liquid or injectables; breakthrough doses should be weaned right down before the trial; and high doses of long acting opiates should be weaned down (MST & oxycontin).  I don’t know why different hospitals have different policies.  In my experience over the years consultant preference has always played a huge role in this type of policy.  I have no idea how other countries deal with this issue, but I do know that the USA carry out a huge number of  nerve transmitter inplants each year.  We all have different pain and maybe a one policy fits all is not the right way to go.  Within our group a lady barrister had a chronic bladder problem (interstitial cystitis) which left her with constant raw areas on the bladder wall.  Her pain had very specific flares resulting in a trip to A&E approx monthly and pethidine injections until the flare subsides.  She was unable to imagine how she could possibly cope during these times of crises.

Telling us that we must cut back is the easy part. Doing it is somewhat trickier.  There will be several people on SCS facebook support groups at any one time who are currently struggling as the pain spirals up as the drugs go down.  It is tough on nearest and dearest too.  Every time that I have lost the plot in recent weeks, my daughter looks knowingly at the rest of the family and mouths “drugs” – even when she deserves to be yelled at!  So is there a simple answer?  I guess the obvious would be not to prescribe opiates in the first place, but until a suitable alternative becomes available, I don’t believe this will happen any time soon.  So meanwhile, we dependents will have to ask you friends, carers and medics to bare with us as we attempt to wean down our dosage, to offer love, support and most importantly, please don’t judge when the going gets tough, as it certainly will.

Update 2017:  I was still taking oxycontin when I had my scs trial and the permanent implant, although I had managed to reduce the dose.  Over the following months, with huge support from my GP, I continued the process of weaning down my dosage – afterall one of the reasons for having the implant was to be free of drugs.  Bloody mindedness stepped in and I came down the doses considerably quicker than my GP wanted me to, but be under no illusion, it was not easy.  Upset stomach and cramps (for someone with EDS gut issues normally), sweating (additional to POTS symptoms), concentrations issues, insomnia (worse than previously) and more.  I met up with several friends I mad on the pain course last summer, and whilst we had all had different experiences with the scs, we were all agreed that we felt better since ceasing opiates.  We still have chronic pain.  But we have found that we have better nights (remember I can’t have my scs switched on at night so have no relief for my nerve pain) – not necessarily sleeping more, but better quality sleep – and the feeling of being oneself again.

For me a noticeable difference has been an increase in the pain associated with my Ehlers Danlos syndrome in my joints and soft tissues since stopping the oxycontin.  I believe that the opiate was masking my deteriorating condition and I am now having to learn to manage this without resorting to strong opiates again.  On bad days it would be very easy to open those bottles of oxynorm again!  download (1)Funnily enough I actually find that weak opiate based drugs, such as codeine phosphate/paracetamol mixes, give me more side effects causing me to reach for alternatives first (heat, gentle movements, gels etc etc). On the bad days……! The spinal cord stimulator has definitely given me control over the chronic pain in my back and leg caused by nerve root damage – I can go as far as to say that I would be unable to manage life without it.  But I am not drug free – I remain on the highest dose of pregablin/lyrica – and it currently is unable to provide any relief for my other chronic pain.

I plan to cover some of the more recent innovations in neuromodulation and also pregabalin?Lyrica – please send me your thoughts or suggestions!

 

Monday Magic – Inspiring Blogs for You!

Another week, another Monday – so that means one thing here at PainPals!  Thank you so much for the feedback for this feature – I love to hear if you are enjoying it, but please do send other comments and suggestions for anything you would like to see!

Monday Magic

There have been two major events in our house over the last week.  The first was a long awaited appointment with a geneticist for the beautiful girl(BG).  I can’t remember if I have mentioned before that we were struggling to find a consultant of any specialism who would accept the kids – just for a consultation.  Unfortunately University College Hospital London Hypermobility/EDS unit no longer take referrals straight from a GP but instead it needs to be from another hospital – this has changed since my own diagnosis.  My GP tried 2 rheumatologists – one recommended by UCLH – and both turned the requests down as the A level student (soon to be known as the politics student – we hope!!) and the BG were then under 18.  So..we tried a local paediatrician and by the time the referral was churned out through the system, said A level student had turned 18!  Then the children’s department decided that they really weren’t the right people to see the BG.  Finally a fantastic lady in the hospital bookings found a genetics consultant from a London hospital who runs a satellite clinic monthly in our local hospital – and even better she specialises in children! Hurray.

Meanwhile the BG has become convinced that she is just making a fuss and doesn’t really need to have a confirmation of symptoms – her biggest concern was that using the Beighton scale she doesn’t have a high hypermobility rating.  Hmmm…..mother here keeps explaining, as her shoulder clunks out of joint for the umpteenth time and she can hardly walk due to hip and knee pain, that there are so many other elements to consider here, particularly a very strong generational family history.  The consultant was a lovely lady who listened to me, my history, the family history, the issues my boys have had and then to the BG herself.  No she isn’t the most hypermobile person she has ever seen, but can she can already see that the BG has hips that are out of alignment and the dislocations are causing the same with her shoulders, so this immediately puts her back at risk of scoliosis and future problems.  Ringing bells in my ears!!!  More of this in another post…..

The second major event was our old dog Sam having a massive haircut with our fantastic groomer.  Now I don’t wish to play down the wonderful care given to my girl, but Sam is about 15 (rescue dog so not entirely sure) and like his human mum, has a very dodgy lower back,  hips and rear legs.  He has YuMove pills daily and struggles to walk now, so getting into the doggy bath and being strapped in the harness before the Jacuzzi begins is no mean feat for an old boy!  He came home a couple of hours later smelling wonderful, looking fab as always but absolutely shattered – doggie spoonie here.

Sammy

Spoonie Sammy

Back to all of you and I have found yet more great inspiring blog posts by writers who I haven’t featured before.  Whilst the majority have some sort of chronic illness background, the posts aren’t necessarily about health!  Did you know that National Cheesecake Day approaches? Find out about it at This Auto Immune Life and about the design and sewing of beautiful clothes from a fellow zebra at Sew Pretty in Pink – I don’t even own a sewing machine!! I may be a bit late to the party, but have found the wonderful Youtube channel from the SleepySantosha website – Spoonie yoga…great!  If you only have time to check out one piece of writing the poem by Bethany Kays is inspiring and heartbreaking in her quest to survive abuse. In fact I struggled to pick just 10 posts this week, so I am featuring 15 with a couple from some of my pals at the Chronic Illness Bloggers who have been here before.

Grab a cuppa, sit back and enjoy some great posts – and hopefully make some new online friends!  The first post is a shout out award for all us spoonie bloggers!

http://www.balancedespitethechaos.com/blog/an-award

https://jamisonwrites.com/2017/07/12/this-is-why-i-hate-summer/

https://sewprettyinpink.wordpress.com/

http://www.thisautoimmunelife.com/2017/07/23/national-cheesecake-day/

https://whenwomeninspire.com/2017/07/22/mental-health-tips-for-women/

https://bethanykays.com/2017/07/24/poetry-45/

https://beingcharis.com/2017/07/20/qa-with-charis-about-her-journey-with-ankylosing-spondylitis/

https://sleepysantosha.com/how-to-start-yoga/   plus Youtube channel: https://www.youtube.com/channel/UC0ROkm_8Bjk0qOQ13XYOebg/feed

https://carlyscrazychroniclife.wordpress.com/2017/07/11/alternative-therapies-or-not/

http://voiceathlete.co.uk/dystonia/

http://momssmallvictories.com/self-care-for-moms-with-chronic-pain/

https://www.my-ra-perspective.com/single-post/2017/04/24/Working-and-Disability-Advice-on-working-while-disabled-and-knowing-your-limits

https://edsjour.blogspot.co.uk/2017/07/10-tips-for-coping-while-in-waiting-room.html

http://www.bloomingmindfulness.co.uk/?p=440

http://www.mesheacrysup.com/blog-living-a-fibrolife/re-visitedfibrosecretc-part-5-i-was-afraid-to-have-a-good-day

Funfetti-Cheesecake

Picture from “this autoimmune life” blog

Please make someone’s day with a follow, like and comment!

Claire x

I have shared this post with Honest Mum blog


Brilliant blog posts on HonestMum.com

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

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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Enabling rather than Disabling – A great post from I Told You I was Sick….and inspiration from a great little boy

I have just read a great piece on Jaime’s blog “I Told You I was Sick” and as someone who was given a walking stick – albeit a pink, sparkly stick – for her 40th birthday and now has a variety of aids including 2 wheelchairs about the house, this rings so many bells. Earlier in the week I watched a BBC programme called The World According to Kids and one delightful 9 year old boy was meeting his a wheelchair for the first time.  This little lad has a very rare form of dwarfism and whilst fiercely independent, he is now getting pains in his legs when walking any distance.  This prevents him from joining in with his family, taking part in activities with his friends and he described feeling sad that he had to be different.  This lovely boy is truly inspiring and actually had me in tears.

It was during this that my lovely girl, who is starting to experience more subluxations and pains herself, said that she really wished that everyone could see mobility aids such as wheelchairs as “enabling rather than disabling”.  Wise old head on young shoulders – that is my 14 year old!  She has seen first hand what a difference wheels have made for me.  So, please have a look at this great blog post:

Anxious about considering a mobility aid to help you get around? The thought of your disease or condition getting to a point which requires mobility help can be heartbreaking. And, especially if you are younger, the embarrassment or ridicule you anticipate for having to use a mobility aid might be hard to swallow.

Remember:

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Find the rest of the article at this link:   8 Signs a Mobility Aid Could Improve Your Life

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