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.
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.
To read the rest of Despite Pain’s post and to read MY story please click here
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 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”!
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!
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!
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!
Blog tour for the highly anticipated third novel in the trilogy by Eva Jordan – the follow up to “183 Times a Year” and “All The Colours In Between”. Many thanks to Love Books Group tours, Eva Jordan and Urbane Publications for the opportunity to take part.
The Blurb – from the publisher
Writer, Lizzie Lemalf, and her loving but somewhat dysfunctional family are still grieving over the loss of a much-loved family member. Lizzie is doing her best to keep her family together but why does the recent death of a well-known celebrity have them all in a spin? The police suspect foul play; Lizzie and other family members suspect one another.
Lizzie begins searching for answers only to find herself being dragged back to the past, to 1960’s London to be exact, and to the former life of her father, that up until now she has never been privy to. Every family has its secrets but how can the past hold the key to a present day celebrity death? They say the past comes back to haunt you. Surely the truth will out? Maybe, but only time will tell…
When I saw the final part of this trilogy was going to do the rounds on a blog tour, I just had to be a part of it. Those of you who have followed my book reviews will know that I absolutely loved Eva Jordan’s first two books in the series, reading them back to back (you can find my review here – All The Colours In Between). You simply must read the first books before embarking on Time Will Tell as the novel continues directly from the second and there is a large back story to be aware of. Normally I write my own book summary, but in this case I am so wary of giving away spoilers, that I have just given you the publishers’ “blurb” above to wet your appetite!!
Ms Jordan continues to tell the Lemalf family saga through the eyes of the family members, with different segments penned by different individuals. This book gives a voice to more people though, alongside Lizzie, Cassie, Connor and Maisy, as Lizzie takes a trip back in time to her early childhood and before in her quest to unravel family history.
I loved hearing from her father, Salocin (Nicolas spelt backwards!) as he found his way into employment in 1960s London, found love and the value of friendship and loyalty. Lizzie’s mother, Ellie, her Aunt Marie and Uncle Teddy also provide a narrative that both intrigues and fascinates Lizzie and the reader. Their stories take us back to Clerkenwell, the City and the EastEnd as they fall in love and marry, then struggle to set up home and make ends meet. Expect drama as the 60s tale unfolds across the narrative of the current day story – from early marriage and post natal depression to glamour, new homes and the murky world of organised crime and old style gangsters. Warning – there are some descriptions of violence.
The characters continue to grow, both in age and personality – I still love the strong, yet poignant Lizzie and the now more mature Cassie (although her tendency toward saying the wrong expression is still there!). The family dynamics remain dysfunctional yet loving, at times broken yet always fiercely loyal, both in the past and the current day. This instalment of the Lemalf family saga involves an investigation, death and bereavement, some surprises from past and more recent relationships, all presided over by the wonderful head of the family Salocin. I know that this is supposed to be the end….but I am sure there are some more stories left for Cassie, Maisy, Connor and the younger family members. Please, Eva Jordan!
I cried and I laughed – I couldn’t put the book down and sat up late into the night to finish it. The emotions that the characters put me through felt like a fairground ride – a true rollercoaster showing the myriad of family dynamics in technicolour! The last line has to go to Salocin though…..always remember “it’s not a life, it’s an adventure”.
Eva Jordan is a published writer of several short stories and Time Will Tell is her third novel. Eva lives in a small town in Cambridgeshire with partner Steve and three of our four children, who are a constant source of inspiration – they are all teenagers, need I say more! Eva’s career has been varied, including working in a Women’s Refuge and more recently at the city library. However, storytelling through the art of writing is her true passion.
I don’t think any of us would disagree that when we focus on the pain, it is worse. When we can distract from it and negative thoughts, it helps. But many of do not like to think we are ‘catastrophizing’. Because it sounds like we are making mountains out of molehills. But really it means we can’t stop thinking about how much it sucks climbing that mountain. Instead of climbing the mountain, because we must. The mountain…
It is half term break already – how did that happen? It feels like school has only just gone back! Anyway we and the lovely girl are doggy sitting for friends this week, whilst our own old boy, Sam, has his holidays at his human grandparents. I’m not sure if I have mentioned before but he was a rescue dog many years ago and the one foible we have never got him over is his dislike of other dogs. So he will enjoy a quiet week in a calm house being spoilt with his favourite breakfasts and gravy on his grits!!
Last night, feeling slightly energetic, I walked Sam up the road to my mum’s house. I say walked….I’m not sure who was the slower, me or the dog. If we had been going any slower we would be stationary and hubby was alternately pushing and pulling us. We dropped Sam off and then continued the slow amble around the block heading back home. Now when we had left home I was quite spritely – for me – so pooh-poohed the need for my wheelchair, taking just my stick and feeling quite invincible. Big mistake!! Half way back (it really isn’t far), and whilst going downhill, one foot was completely numb and the kneecap on the other side had dislocated….double whammy! By this point I had a fit of the giggles but hubby, who was inelegantly hauling me along the road, did not see the funny side. No more outings for me without wheelie back up!!
Talking of which the new car should be arriving soon, thanks to Motability agreeing to take back our current model so that we can have something that has a hoist fitted to take my new wheelchair. Once I have figured out how to get it out of the house we will be sorted!!! I am still waiting for an OT assessment which I hope will highlight the need for ramp access to the front door (amongst other things) – meanwhile we continue to encourage Sam to use the ramp outside the patio door rather than attempting, and failing, to jump off the side of it!
The young engineer is in San Francisco – a little bit of work, but mainly play. I had a message to say that the Air b&b is “OK but doesn’t have a kitchen” to which my response was well he only knows how to prepare tuna with pasta so doesn’t really need one! We have been introduced to the Forbes magazine lists this week – no I didn’t realise that they do the rich lists. Anyway the young engineer and his business partner have somehow made it onto the Forbes 30 under 30 Europe Manufacturing and Industry list – the lovely girl is just staggered that her brother features on the same series of lists that Jess Glynn and George Ezra feature on (yes, yes..different category!). Maybe one day it will be the rich list and he can keep his mother in the manner to which she would like to be accustomed….dream on, Claire!
This is a special post today and it feels fitting that it falls on Valentine’s Day. It combines a very rare chronic illness alongside a review for a book that I hope you will agree is a labour of love.
Have you heard of Ohtahara Syndrome? No, me neither. It is a very rare form of epilepsy and seizures usually start before the age of 3 months, often in the first days after birth. In fact after birth and the first signs of seizures, some mothers realise that their baby has been having seizures whilst still in the uterus. This form of epilepsy does not respond well to traditionally used seizure medications and treatment is very difficult. Many babies will be floppy, have difficulty feeding and suffer repeated daily seizures. The prognosis is poor. (Epilepsy.org.uk)
Leo White is a little boy who has Ohtahara syndrome and suffers many seizures daily that are as yet uncontrolled. When I was asked to review this book that his mother has written for him, I was delighted to be able to.
Many thanks to Leo and his family, the publishers and Love Books Group Tours for giving me the opportunity to read and review such a special book.
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Leo and the Lightning Dragons
Leo is a knight, probably the bravest knight, and he fights dragons. But the dragons that Leo fights are not normal everyday dragons, they are huge, lightning dragons inside his head. Everyone around Leo tries to help, but they can’t tell when the dragons might strike or for how long. The people of the kingdom and Leo’s parents all think this is so unfair and they try all sorts of special actions to help destroy the dragons, but Leo doesn’t seem to be strong enough to shake them off. But one day Leo becomes very angry and decides to fight as hard as he can, making him the bravest knight in the land.
This is a wonderful children’s book written with love and personal experience, and is beautifully illustrated by Gilli B. I am an adult who is able to understand the analogies cleverly used by Leo’s mother to describe the seizures that her little boy fights on a daily basis. The lightning dragons inside his head depict so well epileptic seizures, and I can feel the frustration that the potions from witches, the music from minstrels and the special food from the wizard can do nothing to help – so often medics are unable to find suitable treatments for chronic illnesses whether this be medication, complimentary therapies or special diets.
But what of the child reading this book? It is perfect to become a favourite bedtime story for the early years, with its pictures of knights, dragons, witches, wizards, kings and queens.
But it is also perfect for an adult to introduce to a healthy child the idea that some people have different battles and these are against things inside their own bodies. This need not be done in a scary way and indeed it isn’t in the book, as Leo the knight shows just how someone can battle with their own demons….or dragons in this case.
Leo’s mum also suggests ways at the end of the book to make this a “sensory” story and really bring to life the battles – wonderful and inclusive for all young children, including those with additional needs. What child wouldn’t love using foil to make crackling, lightning sounds, slime to be witches potion or blowing bubbles from the cauldron? And we are told not to forget the cuddles! Find more ideas on the website.
The royalties for the book are being donated to the Childrens Hospices Across Scotland, who continue to support Leo and his family and many others like them.
Leo’s mum says “Every day, my husband and I are amazed by Leo’s sheer determination and refusal to give up and we could not be more proud of our boy, the bravest knight we’ve ever seen.”
This is a lovely book that brought tears to my eyes, but will bring hours of fun to so many children. On Valentine’s Day what could be better than this beautiful love letter from parents to their brave little boy – a true knight!
“Gill wrote the story before Leo’s first birthday. It was a difficult time and Leo was having huge numbers of seizures every day. Feeling that Leo deserved a happier story, one in which his strength and bravery was rewarded, Gill wrote one for him.
She approached Gilli B, a Fife based artist, after seeing her artwork online and loving her whimsical and quirky style. Although she was only originally commissioned to do a few illustrations, she actually loved the story so much she asked to illustrate the whole thing and Leo got his own ’book’ for his birthday!
The following year, Gill had packed his book for a visit to the CHAS Hospice Rachel House and came back one day to find that the nursing staff had read it and written the most amazing comments inside.
Bolstered by their enthusiasm, Gill approached Edinburgh author Peter Burnett for some advice on how to get the book published. He took the book to Clare Cain at Fledgling Press, who fortunately loved the book. Fledgling Press do not normally publish children’s books but made an exception in this case, to help raise awareness of Ohtahara Syndrome and CHAS – Children’s Hospices Across Scotland.”
This is the week of love with Valentine’s Day fast approaching – red hearts, champagne, velvet wrapped boxes of chocolates and of course red roses. The shops are adorned and the internet is overflowing with suggestions of how to spoil your loved one. The thing that I would just love for myself is a week of sleep. Forget being wined and dined, fancy foil balloons or expensive flowers…..the secret to unlocking my heart is to give me sleep!!
Seriously I need to find some self love this week after a week of sleep deprivation. I never sleep brilliantly, but this week has felt like working night shifts again. I no longer panic in the night, but read from a dimly lit kindle or listen to dramas on the BBC radio iplayer or play soothing sleep mixes on Youtube. The problem comes half way through the next day when jet lag hits and after 3 sleepless nights this week it has well and truly hit!! Thursday night was one of these nights, but I didn’t drop off to sleep until Friday afternoon. By the time hubby woke me at nearly 7pm it was time to go out to play…..a takeaway with some close neighbours. Curry for breakfast – can’t remember the last time I did the equivalent! We had been tasked with taking liqueurs and wine – easy. Unpacking the bag when we arrived we had red wine, white wine, limoncello, espresso liqueur, coffee cream, sambucca, oxynorm……what??? Oh no, don’t panic, just a little something for Claire and her pain!
Something that did cheer me up this week was reading that chocolate shaped as hearts is calorie free…well, who knew? This is something that I am totally believing for the whole week, so come on hubby remember how the lovely girl and I have always woken up to a chocolate heart on February 14th? I promise never to say again that snoring from the other side of the bed requires noise cancelling headphones!
I haven’t given you a list of lovey, dovey red heart posts, but rather a diverse selection of blog posts. They range from the breakfast pizza, to giving empowering compliments to girls to random acts of kindness. My favourite has to be the slow cooker fudge brownies – there is a situation where the stomach rules the heart. So sit back with a cuppa, or maybe a glass of something bubbly and enjoy some great blog posts.
So you have probably already noticed that this is a day late, but somehow after reading and scheduling posts as admin for a Facebook group (Chronic Illness Bloggers – there are some seriously talented writers over there!), finishing a book review and just family life, I ran out of time yesterday. But I have found some great posts so thought I’d share them today!
This last week I have taken advantage of the cold weather and being sofa bound by catching up with reading blogs – I have managed lots of sharing but have been a bit rubbish at posting comments, so I apologise to my fellow bloggers. Do you know that the nominations for the 2019 Bloggers’ Bash Awards are now officially open? There are some great new categories this year so take a look and make sure you nominate your favourites!! You may even decide on someone in the list below – there is a great variety and some are new to me. I particularly enjoyed the Verve View post about the good side of social media and the post from Sonja “Shh – don’t tell” made me laugh out loud….I think that all parents will be able to relate to it. If anyone is in need of some pampering have a look at Brooke’s beauty product favs, or if like me you need to declutter then Shelley’s post about the Marie Kondo way might be better…..it would be so much easier if only the rest of the family understood what I’m trying to achieve!!
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A high and low point of the week was the last part of the BBC adaptation of Victor Hugo’s Les Miserables – high as the series has been fantastic, low as it was the final instalment. How will Sunday night measure up now?! If you have access to the BBC iplayer and haven’t seen it yet….it is well worth watching. The actors, costumes, set designs, make up (how did they make the beautiful Lily Collins look so awful?) are all wonderful. Those of you thinking “I hate musicals” be assured that there is not a song to be heard – unless you count young Gavroche’s odd little ditty here and there.
I’m keeping the preamble short today, having given you a long book review yesterday, so grab a cuppa, sit back and enjoy some great reads!