This Zebra becomes a Film Star!! #EDSAwarenessMonth #EDS

OK not quite a film star!  I might have mislead you slightly in the title, but I hope it got your attention.  Hollywood is not calling any day soon, and I don’t think the beautiful girl is destined for a career directing or behind the camera, but we did laugh whilst doing our bit for “We Are Zebra Strong”!  I tried very hard to involve the younger zebras from the PainPals house, but when I suggested appearing in front of the camera the response was along the lines of “in your dreams”!

IMG_3852

We are nearing the end of Ehlers Danlos Awareness month – and awareness month for many other chronic illnesses – but for those of us living with these bedfellows the awareness is a daily reality, not just a month rolling around annually.

Chronically Jenni has once again put together some videos sharing lives of fellow zebras – in fact she had so much material this year that she made 5 Youtube features.  If you watch closely you might find yours truly in the mix!

 

 

 

 

 

Please take a look – bookmark for later – share with friends and family.  Just getting the name out there raises awareness for us!  Details of fellow zebras can be found on Jenni’s channel.

Find Jenni here:

Youtube

Instagram

Twitter

Blog: https://chronicallyjenni.wordpress.com/2018/03/14/chronic-illness-weekly/

Facebook

Thank you for watching!

 

Observe our Stripes – the Daily Prompt for EDS Awareness

EDS Awareness

 

OBSERVE our stripes – we are rare – we are zebras – we have a genetic connective tissue disorder – we have Ehlers Danlos Syndrome!

#EhlersDanlosAwarenessMonth #FragilebutUnbreakable

Ehlers Danlos Awareness Month Challenge! Spread the word and tell the world about EDS

EDS AwarenessTake the Challenge! (1)

 

This challenge has been started by Tayler @strugglinsmol on Twitter and she would very much like all zebras to take the challenge and help spread awareness!! Please share, tweet and join our #FragilebutUnbreakable challenge!

Here goes:

  1. Hypermobile EDS
  2. Officially in 2012 aged 43, unofficially aged 20 as a student nurse orthopaedic surgeon told me I had Marfans syndrome (another connective tissue disorder),  also hypermobility & Mum’s and my long limbs/fingers noticed by a GP when aged 7
  3. POTS, migraine, Raynauds, difficulty regulating body temp, gut motility probs/gastroparesis, chronic back pain & cauda equina syndrome.
  4. Very….slightly less so now than as a teen!
  5. Moderate
  6. Wheelchairs, walking sticks, crutches, motability car
  7. Spinal cord stimulator implant, heat, drugs, more heat, cushions & stretching, yet more heat
  8. Mainly all back surgeries – laminectomy, pedicle screw fusion, redo of fusion with extension, spinal cord stimulator implant, x3 c/sections, minor shoulder & knee exploratory
  9. For surgeries, pain management, gut management
  10. Normal now is constant back and leg pain due to nerve root damage – managed with spinal cord stimulator, limited mobility, worst POTS symptoms in the morning after breakfast, at least one dislocation per day and generalised background pain, poor stamina, nausea & slow gut, unable to feel when bladder is full
  11. Flares vary – generally pain is far less predictable & out of control, brain fog/memory problems, fatigue, POTS flare when unable to even sit up without fainting, blood pooling in hands and legs, breathlessness, lack of concentration, visual and smell disturbance (migraine)
  12. Fab GP, Pain specialists, Cardiologist, Rheumatologist, Orthopaedic surgeon, Gastroenterologist, Urologist……
  13. In our local small supermarket with hubby – I had walked with a Smart crutch, but as we got to the checkout those familiar POTSy feelings came and I was unable to sit down fast enough.  Next thing I knew I was coming round on the floor, shoulder dislocated as arm stuck in my crutch, with a very nice young man at my side rushing for water…..hubby? Well having checked I was safe on the floor, he carried on paying for the shopping telling the bemused cashier “Oh, don’t worry she does this all the time”!!! Her face was a picture.
  14. This has to go to be shared by 2 physios, 20 odd years apart…..the first told me as a 21 year old student nurse that “You nurses are all the same. It is in your head”…..despite my footdrop, no reflexes, and double incontinence – corda equina syndrome!!! Following my second spinal fusion and discovering I had nerve root damage & thus permanent pain, my rehab physio decided she would be able to “cure” me.  During my second visit she told me that I needed to work harder to get some movement into my lower spine…..erm, I don’t think so!  There are enough screws and filler in there to hold up a kitchen cupboard – IT  ISN’T SUPPOSED TO MOVE, WOMAN!  We agreed to part company.
  15. I have been so lucky – but my pain specialist at St Thomas’s actually believed me and has made life bearable AND my cardiologist who also believed me and knew about EDS & POTS (I was so convinced my tilt table wouldn’t show anything)

I will save you from more wittering today and publish the second half later this week!

#FragileButUnbreakable #EhlersDanlosAwarenessMonth #ZebraStrong

SONY DSC

Not even doing the full bend here – don’t do this at home!

 

 

May is Ehlers Danlos Syndrome Awareness Month – Why the Zebra?

AWARENESS-MONTH_ART_2018_FB_COVER-15

I warned you yesterday that I will be going totally overboard with the EDS awareness posts and zebra pictures this month.

To kick us off here is a quick explanation of “Why the Zebra?”

Medical students/junior doctors have always traditionally been taught to look for the simplest explanation when diagnosing a patient in order to prevent misdiagnosis of rare conditions.  If it looks like a horse and it sounds like a horse……if you hear hooves, think horse…..etc!

In medicine the term zebra is used to describe a rare disease/illness/condition, but often it can feel that medics forget that whilst rare, zebras do exist and can struggle to get a diagnosis and treatment.  This is frequently the case for Ehlers Danlos Syndrome patients, and so we have become known as medical zebras.  This has been adopted by the worldwide community now as the identity for EDS and through the use of social media helps to unite us.

images (4)

 

Monday Magic – Inspiring Blogs for You!

The last day of April and the showers are having a laugh as they are more like downpours.  Hubby has gone into the abyss this morning – or rather the Year 5 activity week in Kent where he has mud, zip wires, mud, archery, more mud, climbing, yet more mud and fun!  All with approximately 60 nine and ten year olds…eeekkkk!  There will even be a disco one night, so I hope he remembered to pack his sparkles.

MM 30th April

 

The main event of the week in our house has been the student engineer turning 22, although at times I wonder if it was 5.  His mood swings are off the scale at the moment and the lovely girl and I are counting down the days until his final exams are over – he is always a complete nightmare to live with during exam season!  But I don’t know where the time has gone but my little boy has grown into a young man about to enter the work force (hopefully with a top notch degree in Electronic Engineering) and a world where he speaks a different language to his parents (tech!!).

The lovely girl took her final art exam and passed with full marks.  Her work will have to be moderated, but unless the moderator looks at it with completely different ideas to her art teachers, she will have an A*.  She is so modest that she will hate me for even writing about it – I wish I could say she inherits her talent from her mother, but I’d be lying.  No, not from her father either before you ask!

 

Yours truly  has been fitting in a couple of book reviews and a trip to see the wonderful film Journey’s End around an ongoing migraine – you know the type that you think has gone and than a flicker of sunlight and bam, there it is again.  Several days on now and it has gone, but my head is still stuffed full of cottonwool and my tongue has been secretly pumped with fillers!  The film, adapted from the play by R.C.Sheriff an old boy of my school, is something that I would like to review as a separate piece for you, so watch this space!

Finally, May is Ehlers Danlos Syndrome Awareness month so I give you fair warning now that there will be a constant supply of zebra stripes on this blog.  Meanwhile I hope that you will find my selection of posts this week both enjoyable and useful.  There are pieces about tick bites and Lyme disease,  how to relax doing art, and getting a dog.  For ladies of a certain age Tasheenga brings us “That Bitch Big M” – seriously funny!!  There are also a couple of very inspirational posts from within the wonderful spoonie community!

So grab a coffee, turn off your phone and sit back to enjoy some great blog posts.

http://supermomhacks.com/stuff-i-love/protect-your-kids-from-tick-bites/

http://www.youcanalwaysstartnow.com/2018/04/23/painting-dot-mandalas/

https://tasheengawriteshere.wordpress.com/2018/04/16/that-bitch-big-m/

https://mydailyjournalonline.com/theres-lot-thankful-world/

https://www.unboundroots.com/earth-day-lesson/

https://imsickandsoareyou.com/2018/04/29/when-a-cat-person-gets-a-dog/

https://pseudomonaz.wordpress.com/2018/04/28/to-be-continued/

https://mashaellman.com/2018/04/27/take-time-to/

https://www.sicklessons.com/depressive-sleep-gift/

https://www.ajourneythroughthefog.co.uk/2018/04/be-proud-of-every-step-you-take/

As ever please share some love for these bloggers on your social media sites.

Have a great week,

Claire x

A Park Visit – Daily Prompt : Glimmer

Someone opened the door today

And out I went into the world.

The sky was grey and the earth was wet

A chill in the air permeated my bones.

Nerves and joints hurt so bad

The titanium inside felt icy cold,

Pains misfiring and doing battle

With the pulses of current sent

To stop them in their tracks

From the electrode sleeping

Against my spinal cord.

Someone fought the cold todaySONY DSC

As the park cafe beckoned,

A small alcove housed my wheels

And provided shelter.

Whilst an external heater,

At the lightest touch of a switch,

Spilt a glimmer of light and warmth

To wrestle with the cold world.

 

Daily Prompt – Glimmer

 

Review of “We All Send Cards” website by Mum’s The Boss – and using my girl’s art for Zebra Girl Cards #EhlersDanlosSyndrome

Zebra Girl fb cover

I have written before in my best proud mum style about the beautiful girl’s art, and not so long ago a friend suggested that we look at getting her work some exposure.  This new website was suggested, where we could show her drawings and paintings, but also create some lovely unique greetings cards for the public to purchase.

Pin for later

Cards by Zebra Girl (2)

 

Hubby and I talked about Unique Selling Points, the lovely girl just felt embarrassed and didn’t want her name on anything, so using the emblem for our genetic condition, Zebra Girl was born.  We are really hoping that alongside creating art, we might be able to fundraise for The Ehlers Danlos Support UK through selling some greetings cards.  I have just created a facebook page and would appreciate some likes and shares to get the word out there! Art by Zebra Girl facebook page

I know I am a hopeless salesperson and even worse at marketing, so that is why I am sharing a review from Debbie of Mum’s The Boss Blog.  She reviewed the We All Send Cards site, looking at it from an artist’s, business builder and customer perspective.  I hope you enjoy the review and take a look at the site by going direct to Zebra Girl or to the WASC site, – both links will help fundraise for EDSUK.

 

 

“Today I’m taking a look at WeAllSendCards  a new UK website for sending personalised printed cards, which also offers a fantastic business opportunity. There is also a giveaway at the end of the page so please read on…

How many cards do you send in a year? Even excluding the Christmas card marathon, how many do you send?

If you are anything like me, you probably don’t send as many as you would like to.  I’d love to send more birthday cards, thank you cards, and cards to celebrate all kinds of things. I love receiving cards and I think it is lovely to send them too. But the occasions creep up on me and I find I don’t have the right card at the right time and I can’t be bothered to go out and buy a stamp and post them…..does this sound familiar?

I sent myself a Thank you card  just to test out the concept – it was lovely to receive.  This would be great if you were in business – you could put company relevant images inside the card and thank your customers and suppliers. you could also put a coupon or QR code in there if you wanted to. But it’s also nice for your personal occasions.

You have two options for delivery with these cards.  Firstly you can have them totally printed and just send them directly to your recipient. Alternatively (and this is great), you can part-personalise them and then have them sent to you in cellophane – you can then hand write a bit on the card and send them on.  They tend to arrive at the first destination about 4-6 business days after you order them (more if you are posting abroad) but as long as you leave yourself a week or more of notice then this is a great service…….continued”

 

 

Debbie goes on to explain that as an artist or designer there are both business and creator opportunities at We All Send Cards.  For Debbie’s complete article please visit  Mum’s The Boss.

 

 

 

 

The-MondayMotivation

So Which Ology is it Today? The Chronic Life!

 

The winter Paralympics starts this weekend and once again my jaw will be undoubtedly hitting the floor as these athletes put themselves through feats that no human body should be exposed to.  Do they not know that this poor old body has not yet recovered from the near misses of the “Big Air”, the flips and trips of the ski slopes and the drama of the UK ladies’ final Curling match at the Olympics?  There is only so much stress one old girl can cope with!!

Pin for later

Which Ology

This has been another of those medical fortnights, doing the rounds of the hospitals and doctors.  I called on my very own “Dad cab” the other day and as we arrived at the hospital even he said “So which Ology are we seeing today?” to which the receptionist grinned and replied “If you’re seeing an Ology you’ll be OK”……it will only be the Brits amongst you of a certain age who will get this.  So just to make sure no one misses out here is the wonderful Beattie aka Maureen Lipman:

 

So where were we?  Visiting rheumatology on this occasion and the very nice consultant(wrote about him here!) who is still of the opinion that I’m managing my condition very well, but he will defer comments about care of the ever dislocating shoulder to the orthopaedic consultant – who I visit next week.  But he doesn’t have an Ology, so it might not go well!!

Then there was the visit to Gastroenter”ology” and a young man who introduced himself as Chris and told me his dad trained at the same hospital as me at about the same time. How to make a middle aged bird feel even better about herself – and I haven’t even hit the half century milestone yet!  Well Chris, actually a registrar, explained the results of the last camera which looked down my gut, and would now like to do another one from the opposite direction – oh joy!!  I have to admit to being pretty impressed though when he actually rang me yesterday to confirm that the latest armful of blood I gave shows that my anaemia is worsening….and then I had a call asking me to go in for said delightful procedure on Tuesday.  So yours truly is currently sitting waiting expectantly for a fed ex delivery – no not of flowers and chocs from my children….but for bowel prep from the hospital!!  I know that in the 24 hours before I will only be allowed clear fluids and I have it on good authority that white wine is allowed – when the said authority called his hospital to ask if he could imbibe, he was told it was the first time they had been asked that!

It comes to something when you find yourself discussing which hospital coffee shop serves the best coffee, as Dad and I were on our way home – or when the highlight of the week is a trip out to hospital.  I believe it is called the chronic life!  So now back to the Paralympics to be amazed by superhumans doing extraordinary things and I will continue to daydream of flying through the air on a snow board…..

snowboarder