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.
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”!
Tomorrow I go back to St Thomas’ hospital, London to the Pain clinic and it struck me that this is where my new life as a blogger began. Three years ago I was first seen in the Pain clinic for the start of physical and psychological interviews to assess my suitability for a spinal cord stimulator trial. Just over two years ago I became the recipient of an implant. So much has changed in this time.
The last time that I was seen – approx 20 months ago – I walked into the clinic and was able to report that the scs had made a huge difference to my pain but we made a decision not to try to link it in to my neuropathic bladder damage. Tomorrow the clinical nurse specialists might be surprised to see me enter in my wheelchair, albeit a smart burgundy number, rather than on my sparkly walking stick. They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
All in all I think we can safely conclude that the body is behaving more like that of an eighty something, rather than a forty something (no, my own kids….I have not yet hit half a century!). So it feels like time for a tune up……last week it was the cardiologist – heart still ticking, although the pipework could be in better nick! Saggy vessels were the delicate descriptors for the network carrying the blood of yours truly. Yesterday it was the turn of a new consultant – the upper gastro intestinal – to cast an eye upon this beauty. She deemed a camera necessary to check out the fuel pipes and investigate the pains and possible paralysis of the stomach. Something to look forward to. Next week there is a trip to the bone man – yes Mr Orthopaedic Shoulder Specialist is going to look at the dodgy joints, check the scan which will show a classic dislocation and hopefully come up with a solution to glue the arm permanently in place and all with minimum pain. I think there may be a visit to the rheumatologist on the cards sometime soon, but don’t want to be greedy.
So tomorrow I hope that I can have a tune up – maybe the frequency and bandwave of the stimulation increased and widened to cover my right hip and leg too. At the moment it covers the chronic, constant nerve pain in my back, left leg and foot – the result of nerve root damage in the lumbar spine. The pain in my hips is different and is caused by a mix of arthritis, recurrent dislocations and stretched ligaments/soft tissue. But the whole host of chronic pain types are all as a result of my Ehlers Danlos Syndrome, literally a pain in the neck that has gradually overtaken life, but no use whinging as my kids remind me daily! So when the nurses express surprise to see me so altered, it won’t be because the scs isn’t working – would I have it done again? In a heartbeat as it has given me a way to manage some of the pain.
But I am hoping that with their little box of tricks, that looks very like a mechanics electronics box for tuning a modern car, the nurse might be able to switch on a couple more electrodes, alter the band width, tune in some good music and drown out some of this other bl**dy pain. They might not be able to get rid of the rust, but will report back when I am wired for sound!
We are now well and truly into the countdown for Christmas, PainPals, so it seems only right that Monday Magic for the next couple of weeks will become Christmas blog posts for you! Here in the UK the old song “It’s beginning to look a lot like Christmas” is very true as a blanket of snow has enveloped great areas of the country. The snow here south of London hasn’t settled, but other parts of the country have ground to a halt with schools and Christmas markets closing, ice rinks shutting and grid lock on the roads. Those of you in other parts of the world accustomed to snow must look at us and laugh…..
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So it is bitterly cold – pretty awful for the nerve pain – the Christmas tree is bought and just about decorated and the outside lights are up…..but only half are working! Aghhh. This weather is pretty grim for us spoonies and believe me that the cold and damp really do make a huge difference to our ability to do things. Friends, please still ask us to parties and carol concerts, but don’t be too upset if we have to bail at the last minute. I for one will always get to a party if I can!! At the moment though the cold, nerve pain and spinal cord stimulator are doing a manic battle in my back and leg!
On a family note, for those who sent such lovely messages when I wrote about my lovely girl and her friends’ exams – she did really well and is so pleased. So fingers crossed for next summer. Meanwhile the art coursework takes priority….
Sketchbook street scene by Lucy
I have really enjoyed reading some fantastic Christmas posts over the last few weeks and have pinned many. This is a selection of just a few – they vary from traditional recipes(check out the slow cooker hot chocolate – gorgeous), a Christmas book review, gift ideas for the family and for those with chronic health, ways to keep stress at bay and some classic Christmas movies. But to start off I’d like to direct you, with some mulled wine or cider in hand, to a Christmas limerick….enjoy!
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.
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.
Hello and Happy Monday! I hope that you have all enjoyed a relaxing weekend and are ready to face the week ahead.
This past week has offered us a smorgasbord on the world stage from the battle of words between the White House and North Korea to the retirement of possibly the greatest athlete to date, Usain Bolt. As America’s top military officials arrive in South Korea and the leaders of China and Japan speak out publicly, let us all hope that this becomes no more than a war of words, not only for the the people of Guam, but for the world at large.
Over the last week our household has been glued to the IAAF World Athletics Championships. There have been some amazing highs and some breathtaking lows. Athletics on the international stage is experiencing its own war at the moment: doping scandals, athletes fighting to prove that they are “clean” and able to compete, medals being stripped and bans imposed. The public made their feelings very clear with the booing of US athlete Justin Gatlin – an runner who has served 2 drug related suspensions and has become the representative bogeyman of all those accused of doping.
But we can also view many aspects of the championships as beacons of light in our allegory for world peace. The final track races of sporting legends Usain Bolt and Mo Farah didn’t end as fairytales do, but instead showed these remarkable men to be human. They both won medals – just not the colour that everyone hoped for. If Farah’s races had been the other way around and he had won his silver first and the gold medal last would this really have altered his achievements – or just the way his final race was reported in the media. I don’t believe that anyone wanted to see Bolt fall in pain to the track rather than finishing his final race, but he showed his strength of character by returning to take a final bow for his international fans as the games closed. Out with the old guard….but in with the new. So many talented young people have sprung onto the world stage this week showing a spirit and enthusiasm that fires up even a chronic illness old crone like me! There have been inspiring stories of overcoming injury and surgery, tears of disappointment and tears of joy. For me a really memorable moment was when the Syrian high jumper realised that he had won a bronze medal, the first ever World Championship medal for his country. The disbelief and ecstasy on his face told such a story of this man who lives and trains in war torn Damascus. What an inspiration to us all!
Bronze High jump World Champion Majd Eddin Ghazal Picture from IAAF.org
You must have wondered where that was all leading, but it can only be to one place – one set of inspirational people to another! So grab a drink, sit down and allow yourself some “me time” finding and exploring some inspiring posts from some more inspirational bloggers!
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!
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.
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!
Having suffered with chronic pain for many years, I know first hand that at times it can feel like there is little support out there for sufferers. It was after using some of these websites myself, that I was inspired to start writing Pain Pals, to document my journey as I had my spinal cord stimulator trial for the chronic pain due to nerve root damage in my back. My underlying chronic illness, Ehlers Danlos syndrome, has caused me even further deterioration and pain……meaning that I continue to look for support in day to day life.
This blog post from Barbara details some great sites that might be able to offer you or a loved one pain support:
My first choice has to be A Way With Pain – I was first introduced to this site back in 2013 after seeing an article on Julia Kelly a chronic pain sufferer, and founder of the charity A Way With Pain . In her Father’s words about Julia’s chronic pain,” Whilst the levels of pain and financial pressures have not changed, her positivity, self- confidence, and self- esteem are slowly returning. …..
I have to share this post with you from My Stripy Life blog – a fellow EDS zebra. Except part of this post has been written by 7 year old Rubie and incorporates a review of her favourite story. Enjoy……
“The story tells of a prince who wants to marry a princess, but is having difficulty finding a suitable wife. One stormy night a young woman drenched with rain seeks shelter in the prince’s castle. She claims to be a princess, so the prince’s mother decides to test their unexpected guest by placing a pea in the bed she is offered for the night. She covers the bed in 20 mattresses and 20 feather-beds. In the morning she asks the princess how she slept. ……..
Picture from My Stripy Life
For decades I have related to the story of the Princess and the Pea. As a child I was always tossing and turning in bed at night uncomfortable…………Now, I have my own princess who feels every bump in her bed and is finding parallels with this story and her own life. When she had to complete a book review for homework this week on her favourite traditional tale she immediately chose this story……”
They might be shocked to learn that my autonomic nervous system has become increasingly worse since the implant onto my spinal cord – merely coincidence, I couldn’t really say – causing me to regularly have severe dizzy spells, faints and difficulty controlling my body temperature. I did dislocate several joints whilst I was on the residential 2 week pain course so this wouldn’t be new, but the fact that my right shoulder is out of place more than it is in and the faints generally knock a few body parts out of alignment might raise eyebrows.
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