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.
Pin for later
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”!
This week I have been surprised and a little overwhelmed to find that I have been nominated in 2 categories for the WEGO Health Awards!
These awards are particularly special as nominees are described as a “Patient Leader” and “Advocate” – and I find myself mentioned alongside some Health blogging royalty. A huge honour and very exciting.
“WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics. Click here to learn more about their Patient Leader Network. The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities – but often without recognition.”
When I was first medically retired, I found the amazing world of bloggers and completely unexpected online support from those who had been through similar health experiences. Strangers who understood – I was bowled over that so many were happy to share experiences & lend an ear, but also to how many are living everyday with a variety of health conditions. This is what inspired me to start PainPals – if I can offer some support as well as take it, give friendship as well as make it and offer some words (I stop short of saying wisdom) and humour about living with a family and chronic illness – then I am happy!
So here I am, nearly 3 years on from my spinal cord stimulator implant and so nearly 3 years on from starting this blog. I find writing therapeutic on so many levels and find myself nominated for “Best Kept Secret” and “Best in Show:Blog” – thank you so much!
If….you would be happy to have a look at my Nominee Profile and endorse me, that would be fantastic. Take a look at some of the other great nominees too!
More specifically the pain from nerve root damage in my back is uncontrolled. Driving me insane! Those of you who have been Pals for some time will know that this pain is usually tamed by my spinal cord stimulator – an implant that scrambles the pain signals to my brain – but this week there is a battle going on between my body, the stimulator and my head…..physical, psychological and emotional. The heat and humidity is ensuring that the other pains in my joints and soft tissues are also flaring and my autonomic nervous system has frankly gone haywire.
The changes in air pressure and temperature have always affected the metal skeleton that bolts the bottom of my bony spine together. This spinal fusion currently hurts – it hurts at the immediate vertebra level above the fusion (my EDS means the spine overextends even more due to the bones below being fixed); it hurts in the bones that have been cemented and screwed together with titanium nuts and bolts; it hurts in the surrounding muscles and soft tissues trying to hold the whole lot together. In fact as it starts to feel more stormy, I am certain that the titanium is about to break loose and rip through my skin, which feels like it is stretched tighter than a drum.
I feel that I should at least be able to use this time and be useful. Write, read, catch up – but the symptoms have a way of robbing that time and creating a thick pea souper of brain fog and fatigue. Concentration is poor and I seem to spend periods of time lying on the floor, unable to do anything – this post is taking hours to write.
I am irritable, stroppy, snapping at the family. My patience level is zero.
I feel that I let myself and others down as I crawl between the sofa and the floor and bed. I know that staying still is the worst thing to do, but is is tricky to keep up that physical exercise that we are told we must do when in the thick of a flare. There is so much advice out there for coping with flares and chronic pain, the majority well intended, but there is no one size fits all or one quick fix. We are all different.
I have made this flare worse! Wise? Probably not. Worth it? Definitely! Tuesday evening we attended Prize giving at the lovely girl’s school – she protested that I didn’t need to go, but I was determined I would see her mount the stage! It was hot, there were performances, there were presentations to the year groups, there were presentations and words about every girl leaving the sixth form, there was the guest speaker’s speech. Then there was yours truly sat in my wheelchair – slap bang in the middle of the front row! A perk of needing more space to accommodate your wheels, but a definite disadvantage for quietly creeping out. When the dodgy shoulder slipped out of socket and the neck and whole arm started to shake with spasm, I couldn’t even have a sneaky puff on my Medipen CBD vape – best birthday present ever!! (more of that in another post). Might have raised a few eyebrows!
It was tough sitting still for so long and I had the feeling that my head was too big and heavy for my neck to support – lollipop head, but the guest speaker, an old girl of the school, left a lasting impression. Currently a senior figure in one of the “Big Four” accounting organisations, she spoke to the students about achieving their potential in whatever they chose to do – she said that whilst she knew she would never be saving lives, making significant discoveries or winning a peace prize, she had tried to be the best version of herself.
“Be the best version of yourself” – isn’t this something worth striving for no matter our individual circumstances? I have been thinking this week that even with a chronic illness there still a best version of you and of me. It may not be the same version from 20 years ago, and it sure as hell isn’t the best version that I had envisaged, but isn’t that true for everyone? Circumstances change and so do we. The 18 year olds who released balloons from the drinks reception after the ceremony have their lives ahead of them – exciting futures that will mould them and change them.
I won’t lie – the best version of me has not been a pretty sight nor one I particularly like this week! But it is something that I will strive for, and if my semi-adult kids can learn from this and try to be the best version of themselves, then I can be happy.
If you are British, you can’t fail to have noticed that our National Health Service celebrates 70 years since its inception today. Aneurin Bevan, Health secretary in the Attlee government, was the champion for a healthcare service that brought together all providers under one umbrella in order to provide care for all from “the cradle to grave” and “free at the point of delivery”.
This is not a political piece – there will be plenty out there to read – neither do I want to focus on the woes of our health service today or the shortages of money and staff. I have spent many years working in the service and am now find myself very much at the receiving end of it and I could write a book about the ups and downs. But today is for celebration of all that is good about our NHS and as a nurse in my former life, I could not let it pass unnoticed. These are just a few of my observations from personal experiences….
I spent my formative years growing up in London teaching hospitals with a group of like minded girls (and the odd chap!) who became family. We worked hard, we played hard, we were teens and able to cope with a night out followed by an early shift. The structures within the NHS then taught us self discipline, punctuality, reliability, pride, teamwork and respect (amongst other things!). We had experiences and encounters with patients and colleagues that would shape our young minds and remain with us for life.
I remember my first death, my first birth, my first still birth – all before I turned 20. I had never seen a dead body before (how many 18 year olds have?), but when an elderly patient whom I had cared for on my first ward died, she still needed to be cared for. In more recent times whilst working as a hospice nurse, I have often looked back and thanked a third year student nurse Kevin for teaching me not only how to lay a person out, but the importance to retain empathy and kindness whilst doing so. When I recall my first birth, I really don’t mean the birth of my first….although I do remember that, Young Engineer!! I was stood at the shoulder and then holding a leg during this labour and birth, and I can still recall the wonder when that little pink, slightly slimy being slid into the world. Actually he wasn’t so tiny at nearly 9lbs and was named Matthew, and I was privileged to be one of the first to have a cuddle. It has never left me.
The still birth came only weeks after the birth of baby Matthew. A couple had been admitted with a labour that had commenced at 29 weeks – third baby for mum, but first for dad. The midwife knew quickly that something was wrong and broke the heart breaking news that there was no heart beat. I was assigned as an inexperienced 19 year old to stay with this couple whilst labour progressed during my late shift. It is impossible to put into words all that I learnt that day. The bond that a carer can establish with a patient and relative under such intense physical, emotional and stressful circumstances was never clearer than that night. My shift ended at 10pm but I had to stay until that baby was born. Another baby boy entered the world at 2am the following morning, perfect, tiny and asleep. He was beautiful and that is the first time I have felt my heart break. His parents bathed him and dressed him for the first and last time. They held him, whispered to him, loved him – and whilst I felt that I was intruding on such a deeply personal experience, they were adamant I should stay. I carried that little boy away and cried my eyes out.
I have written about our experience as young nurses in a hospital in the 80s with an HIV and Aids unit here – a really challenging time for the NHS but rewarding, life affirming and so challenging for this bunch of young nurses. As a slightly more mature group some 30 years on we revisited our old stomping ground recently (read about it here) and it brought back so many memories – both from time as a student, and then as a young staff nurse in other London hospitals. During my time in palliative care I met some amazing patients, had the good fortune to have wonderful colleagues and learnt to appreciate life. I still miss being a nurse, I still feel like a nurse and I am still proud to have been a nurse in our NHS.
In recent years I have been in need of the NHS for friends, family and myself. From a dear friend dying from cancer, to the deaths of all my grandparents, to the middle child slamming a door on his sister’s hand that then required reconstructive surgery – the NHS has been there. A&E visits for broken bones, kidney stones and dislocations. The time when the lovely girl was taken seriously ill – “Mum, should she look like a zombie?” – and rushed in with a highly contagious gastroenteritis aged 6(Rota virus), and when dad showed all the symptoms of a brain tumour days before a holiday in Canada.
My experiences haven’t all been positive – particularly some of my own surgeries over the years – and I am now classed as chronically ill and at the mercy of our health service. I been on the receiving end of some dire care and have also had some fantastic care too (Medical professional to Professional Patient). But I do appreciate how far the NHS has come over the years, the technological & pharmaceutical advances that have been made, and the public interest in health. I have been inspired by some wonderful people over the years – Dr Joe Ford, a pioneer of breast cancer treatment in the 70s and wonderful teacher & colleague in palliative care: the staff nurse who cared for my great grandmother – she suggested to me, aged 17, that I had the makings of a good nurse; Julia Fabricius our nurse tutor; Paul Reeves, Charge Nurse at the Middlesex hospital who believed in me after my first back surgery and his friend Karen Aubrey who became my first ward Sister at Charing Cross Hospital and a great mentor; Geoff, my physiotherapist who worked with me as we both learnt about my condition; my pal Caroline who became a staff nurse on the first teen cancer ward in London – we laughed when she left our flat in her stripy leggings and purple Dr Martens boots as they didn’t wear uniform; and wonderful Cathryn, also in my set, who having fought for her registration now helps other nurses who face unfair dismissal or have been made scape goats. This list could honestly go on and on…..but must include everyone in my set, March ’88!
The National Health Service is a sum of all its parts – at times it is brilliant, other times it fails; there are the cutting edge treatments and the failing, understaffed departments. But today it turned 70 and there are some fantastic people who still strive to deliver health care for all, from cradle to grave, free to all; people who over the years have made it the institution, for better or for worse, that it is today – Happy Birthday!