Supporting People on Rare Disease Day – My Story shared on Despite Pain blog

Today is Rare Diseases Day and I was delighted to be asked by Elizabeth on Despite Pain blog to share my story of having Cauda Equina Syndrome, alongside Tom Seaman who has Dystonia; Jenny Jones who has Familial Adenomatous Polyposis and Short Bowel Syndrome; and Zoe (aged 12) who has Chronic Recurrent Multifocal Osteomyelitis.

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Supporting People on Rare Disease Day – Despite Pain

It can take a lot of courage to discuss health issues with friends and family, but sometimes people put their own health in the public spotlight to help others.

Sharing Matters

When someone has a rare disease, there is often very little information and support, therefore, what these people do really matters so much to so many people. Sharing their stories matters too.

Following on from my post last week, Why We Need to Support Rare Disease Day, I’d like to support a few people who have rare diseases by sharing their stories.

To read the rest of Despite Pain’s post and to read MY story please click here

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The lowdown on Cauda Equina Syndrome
What does cauda equina mean? Well quite literally it is the horse’s tail and the bunch of nerves exiting the base of the spinal cord resemble a tail.
Cauda equina
Cauda equina syndrome occurs when something invades the spinal space and compresses the cauda equina bundle of nerves. Most commonly this is a lumbar disc herniation (as in my case where the disc completely ruptures).
The defining symptoms for CES are
  • Sciatica (neurogenic pain) in the lower back and radiating down one/both legs
  • Bladder dysfunction usually leading to retention but occasionally to frequency, change in flow or incontinence
  • Altered perineal sensation or lack of feeling in the “undercarriage”!
  • Loss of some sexual function/sensation

For more information read:

Science Direct

British Journal of General Practice

Monday Magic – Inspiring Blogs for You!

I can never believe how quickly Monday Magic comes around, but what I do know is that week after week I find just how many fantastic blogs and bloggers there are in the blogosphere!

Monday Magic 25th Feb

The stand out story for me this week was that of Tony Foulds, the Sheffield pensioner who has cared for the memorial to 10 US airman who, as a child, he saw crash in his local park.  The crew of the Mi Amigo attempted to land their damaged aircraft in the Sheffield park where Tony and his friends were playing, but when the airman waved to the children to move, the youngsters merely waved back.  It remains the biggest regret of Tony’s life that as an 8 year old he thought the pilot was waving to him, not at him to move, and thus flew the craft into woods where the plane crashed.  When a BBC journalist heard that Tony’s greatest wish was to have a flag pole and a fly past on the 75th anniversary of the crash, he set about making it happen.  Relatives of the Mi Amigo crew joined thousands of local people as Tony watched the US and British airforces fly overhead – one plane for each airman.  Every time I have watched, Tony Foulds has reduced me to tears with his passion and his firm belief in caring for the memorial of the strangers he calls family. (See the full story here: https://www.facebook.com/bbcbreakfast/videos/642676716166370/)

In our household hubby went to Cambridge with my brother who had treated him for his birthday to a Prog Rock weekend….not my cup of tea, but they had a good time listening to loud music (Steve Rothery of Marillion fame) and visiting RAF Duxford.

 

So that left me in the capable hands of my lovely girl – yes, a girls’ weekend! I would love to be able to report a time of shopping and clubbing – once upon a time definitely! – but it was more like artwork (hers not mine) and a film.  The weather has been beautiful for February, so we managed to get ourselves to my parents’ house under our own steam.  Now I know that friends who know us in person are laughing now and yes, it is the same road…..but yours truly had the very tricky job of steering the new motorised chariot out of the patio doors, down the ramp, along the side entrance and out into the street.  Then the local council have seen fit to install temporary traffic lights at the roundabout that separates our end of the road from theirs, so I had an unexpected negotiation and a girl getting very worried her mum was going the wrong way in the road!  Fear not – my driving skills are improving and I was able to report to hubby that we had made it in one piece and then I used the headlight he had fitted to guide us home in the dark.  Well, ok it is a bike light and the street lights were on, but it still means that I can be seen coming!!  But to be serious, I really enjoyed the feeling of independence which I hadn’t quite expected!

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I mentioned above that I have found some fab blog posts for you and some of these are from a lovely facebook group that I belong to – Sharing, Inspiring, Promoting Bloggers.  The first on the list is giving a shout out to Rare Disease Day, later this week on 28th Feb – please have a look at the bloggers who have shared their stories in part one of Despite Pain’s series.  Yours truly will be featured in the next episode talking about cauda equina syndrome – I will share this with you later this week.  Meanwhile sit back, grab a cuppa and enjoy!

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https://despitepain.com/2019/02/18/why-we-need-to-support-rare-disease-day/

https://wheelescapades.com/2019/02/21/12-frustrations-of-being-a-wheelchair-user/

https://ginlemonade.com/2019/02/13/house-hunting-as-a-wheelchair-user-other-stories/

https://yesterdayafter.com/2019/02/19/art-for-music-series-aurora-portrait-new-release/

https://jumpstartpositivity.com/simple-things/

https://youcanalwaysstartnow.wordpress.com/2019/02/18/dont-be-rigid-and-brittle/

https://collinscrohns.wordpress.com/2019/01/04/top-chronic-illness-books-and-blogs-of-2018/

http://angelanoelauthor.com/guest-post/published-elsewhere/out-of-my-comfort-zone-why-i-wrote-an-essay-that-scares-me-a-little/

https://anhistorianabouttown.com/six-the-musical-review/

https://myblurredworld.com/2019/02/24/online-world-accessibility/

Please like, comment and share!

Have a great week,

Claire x

 

 

From the Lancashire Evening Post: Swimming star, her chronic illness and decision to retire from the sport #EhlersDanlosSyndrome #RareDiseaseDay

It is unusual for me to publish 2 posts on one day – but it is Rare Disease Day and this is another example of an amazing Zebra #EhlersDanlosSyndrome. The Lancashire Evening Post have kindly allowed me to share their article with you.  To view the accompanying video to the post please visit Lancashire Evening Post

Big Interview: Swimming star Stephanie Slater opens up on decision to retire from the sport

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As Stephanie Slater succinctly puts it, ‘To look at me, you wouldn’t think there was anything wrong’.

Indeed with her almost permanent beaming smile together with her bubbly personality, the Longridge lass – who won a glorious gold medal at the Paralympic Games in Rio – does not look anything other than ‘a picture of health and happiness’.

Congratulations on being an inspiration to so many and accomplishing your Olympic Dream!! Happy Retirement @StephESlater !!

However, the swimming sensation last week made the shock announcement that her pool career was over at the tender age of just 27 due to ongoing health issues.

It is a little known fact that Slater almost did not make it to Rio after struggling with a severe neck injury the year before.

After a series of tests, she was eventually diagnosed with Ehlers-Danlos syndrome and Postural orthostatic tachycardia syndrome (POTS) – conditions which she has unknowingly struggled with for all of her life.

Passed off by a series of medical professionals as just growing pains when she was a child, it is remarkable to think that Slater reached a level where she was considered a potential competitor for the 2012 Olympics.

Stephanie Slater
Exceptional Zebra, EDS swimmer Stephanie Slater

Stephanie Slater

However, the conditions would eventually put paid to her able-bodied career in the lead up to the London Games and almost curtailed any hope she had of competing as a paralympian.

Through sheer guts and determination, Slater made it to Rio and all the pain was worth it when she returned with a gold in the medley relay and silver in the S8 100m individual butterfly.

“It was actually touch and go as to whether I was going to make it to the Paralympic trials in 2015 – I was out of the water struggling with a severe neck injury,” Slater said.

“But with rehabilitation and just basically pushing myself, I managed to get the qualifying time.

Stephanie Slater shows off her medals.

Stephanie Slater shows off her medals.

“With the amount of pain that I was in, I was eventually diagnosed with Ehlers-Danlos syndrome.

“The condition is to do with your connective tissues throughout the whole of your body and basically mine is faulty. It means my body is not held together like it should be.

“I was also diagnosed with POTS.

“It was that condition which kept me out of the pool and preventing me from training because it causes you to collapse unexpectedly.

Stephanie Slater moments after winning her silver medal in Rio

Stephanie Slater moments after winning her silver medal in Rio

“So being around a pool made me nervous because I did not know whether I was going to collapse or not.

“Both of my conditions are invisible.

“To look at me you wouldn’t think there was anything wrong with me.

“But there is and it badly affects me.

“Because it’s so rare, they had not been able to diagnose it when I younger.

“I have had all these problems growing up and it was just put down as growing pains or that I had been doing too much training.

“It was just brushed off, but actually I have been battling with it since I’ve been a baby.

“It’s kind of nice in a way to finally have a diagnosis.

“At the same time, because there is no cure, it’s one of those where it’s like, ‘It’s got a name, but it doesn’t change anything’.

“I have just got to get on with it

“It answers the question of how I got the injury to my arm when I was training for the London Olympics in Swansea.

“Back then, they didn’t know why, but now there is an answer.

“Hopefully by stopping swimming now, I will stop myself from suffering any more nerve damage or even worse paralysis.

“With my neck, it’s quite fragile, so I have to be really, really careful that I don’t cause further damage.

“People can’t believe what I have achieved with what I have been dealing with.

“I have never complained about it or spoken about my condition and how it has affected me.

“At the end of the day, I wanted to achieve my goals and I wasn’t going to let anything stop me.”

There are certainly pangs of regrets for Slater that she has been forced to give up the sport she loves doing the most prematurely.

“It was really, really hard and it took quite a few months to come to the decision,” said Slater

“I spoke to a lot of medical professionals and also to my support team at British swimming.

“I had to make the hard decision to retire for my own health and well being.

“I always felt that I had a lot more left in me to give so that is what has made it really hard to stop.

“I know that it is the best decision for me and I have just got to look at what I have achieved.

“My last competition was Rio and the Paralympics, so it’s nice to think that I finished on a high – winning a gold and a silver.”

Slater’s memories of her time in Rio will never leave her and she breaks out into an even wider grin – if that’s possible – when she thinks back to her time at the Paralympics.

“It was just a party atmosphere,” she said. “The atmosphere was incredible.

“I remember doing an interview with Clare Balding in the village where all the different venues were and the amount of people who were crowding around us was incredible.

“They all wanted to speak to us and have pictures. It was amazing.

“I had been to the Commonwealth Games in Glasgow two years earlier and I was expecting it to be like that.

“But the Paralympics were so much bigger.

“Just the size of the food hall was incredible – it was like the size of four Asdas.”

Slater’s achievement in winning gold in the relay was a double delight as the team also broke the world record.

“The relay was between us and the Australians,” she said.

“That was how it had been four years earlier in London, but on that occasion it was the Australians who had actually pipped GB.

“When I dived in, I had to catch the Australian girl up.

“I just thought, ‘I have got to get the gold – there’s going to be nothing stopping me’.

“I just put my head down and went – when we touched that wall and we saw that we had broken the world record as well, it was such an amazing feeling.

“It was so, so nice to stand on the top of the podium and see the GB flag rise.

“All of the GB supporters were there with their flags and I could see my mum and dad in the crowd.

“That was really, really special for me.”

It is #RareDiseaseDay – this is a great post written by Sarah on My Stripy Life

Today is Rare Disease and I have a wonderful piece for you to read about my own rare disease….I wish I had written it but another UK Zebra friend & mum, Sarah, is the author! Enjoy!

1 in 12 million

 

I’m not going to dwell on the detailed science involved with EDS and CMT, the genetics behind the conditions so to speak.  I may get into that all in a bit more detail at a later date.  I will try to explain what it means to live with them each day.  Why I might look fine one day and not the next.

CMT is genetic, it has been passed to me from my mum.  We were unaware it was in our family until I was diagnosed after complications having my first baby.  It is thought that around 23,000 people in the UK are affected.  I have a 50% chance of passing it on to my children.  I have three children now, our youngest had a positive diagnosis just before her second birthday, one of the boys has a negative result and one hasn’t been tested.

CMT affects the nerves in your peripheries, your arms and legs.  Our body’s system of nerves is similar to a network of electrical wires………continued

My EDS diagnosis came later, 10 years later.

At first we thought that CMT explained everything in our families weird and vast medical history but as time went on gaps showed.  Rubie blessed our lives with her beautiful smile and the skills of a contortionist and we started to want answers to all of our unanswered questions.  It was recommended that I see the amazing professor Rodney Grahame before my foot surgeon would consider surgery, at this point I had been reading his books to gain answers to Rubie’s gross hypermobility.  After an hour and a half’s consultation I now had a shiny new badge to wear.  The missing pieces of our puzzle now slotted into place.

EDS is the term given to a whole collection of inherited conditions that fit into a larger group known as hereditary disorders of connective tissue. Connective tissues provide support in skin, tendons, ligaments and bones, it is the glue that holds the body together.  There are several different, distinct types of EDS, but they have some features in common, loose joints, stretchy skin and tissue fragility. I have Hypermobility Ehlers-Danlos Syndrome. The exact cause of HEDS is unknown. The features suggest that there is a problem with connective tissues and possibly collagen. The condition appears to be inherited which suggests that there is a genetic cause. It is likely that there is an alteration in a gene, or several genes, containing the instructions for making connective tissue. This results in the connective tissue being less effective.

It leaves me with joint hypermobility, my joints having a wider range of movement than usual, they are loose and unstable, can dislocate and subluxate.  I sublux my joints daily, this week cutting a slice of cheese I popped out my wrist and couldn’t lay on my back in bed or one of my shoulder blades would sublux.  In my 20’s I would dislocate my knees on a daily basis with minimal trauma, walking into Regal’s on a Saturday night or turning over in bed.  I had major knee surgery to realign things and tighten ligaments so it happens less now than before but is gradually becoming more of an issue again.  As my joints are less stable they are prone to sprains and strains……” continued

Envy (1)

 

This is just a small part of Sarah’s post and I would really like you to visit her as this is my story too…well at least the EDS parts including the daily dislocations, dysautonomia, pain, gut problems and in our family neck issues with recurrent migraines.  All 3 of my kids have symptoms too, with the boys both experiencing dislocations of the knees in early teens, one has bizarre stretch marks on his back whilst the other has mild pectus excavatum (deformity of sternum), and one has severe migraines & I suspect a Chiari malformation.  The lovely girl has chronic pain (which she deems not too bad although it is daily), dislocations and difficulty holding a pen.  All three have poor proprioception (are clumsy), have snow vision on standing (dysautonomia) and anxiety…..

Find Sarah’ complete post here : One in 12 Million 

Be sure to watch her wonderful kids’ film here: https://youtu.be/rTtcT5qaiZw

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