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.”
How often do you have those weeks when life seems to have sped by and yet you’re not sure what you have done in that time? I made a birthday cake with a robin theme – birds that is…..not Batman or Bristol City football club (me to hubby: “why on earth would I make a 7 year old little girl a Bristol City football club cake? She’s not a football fan and lives nowhere near Bristol” – he supported them as a child and still does!). We went out for a family Chinese for hubby’s birthday as my brother and nephew were here – this birthday rolls on and on. I started another blog post – wrote the majority of it in fact, but never quite got it finished (one for later this week) – and I cancelled plans a couple of times. Oh….and I had several sleepless nights.
It never fails to amaze me just what sleep deprivation can do and when that insomnia is down to pain the resulting fatigue and drain is even worse. Now I look back at the many sets of night shifts and then a period working continuous nights when the kids were young and wonder how I did it….much like any other shift worker. The constant tiredness must be akin to constant jet leg, but without any promise of far off sunny climes! I did get phone calls from school on more than one occasion back in the day when I had slept through my alarm and failed to pick my kids up from school. It is one thing dropping off at 8.30am in your PJs and boots, but quite another thing picking up inn your dressing gown at 3.30pm!
My own blog may have failed to spring any new writing over the week, but I have managed to read some great posts that did make the light of day. I have found some great new and very different bloggers on a couple of meet and greets (Danny’s Dream Big Dream Often and Esme’s Senior Salon) as well as some familiar faces. So sit back, enjoy some you time and get stuck into some fabulous reads.
We are already half way through January and in the PainPals house this means that a significant birthday has been celebrated by the hubby. I couldn’t say anything in my last post as I had booked a surprise weekend away and he reads these blog posts!
For those of you who know me or live with a chronic health condition yourself, you will know that planning any sort of trip away is tricky. The variability and unpredictability of symptoms and general wellbeing can make it difficult on a day to day basis – so it felt like a risk to book a trip away and I wasn’t confident enough to look too far afield. We haven’t taken a holiday abroad since before I was disabled from work, and an annual holiday is a thing of the past for many reasons. So it was with some trepidation that I plotted with the family and arranged a couple of nights away in a haunted 15th century inn on the coast in East Sussex.
Hubby had no idea! We all managed to keep it a surprise and let nothing slip, only letting on the night before we left. I had seen a review on the Mermaid Inn, Rye on Kerry’s blog Kerry’s Life and Loves and fell in love with the history and photographs of this historic hotel and town. “How on earth will you manage on the cobbles and all those hills?” asked my mum, alongside a nagging little voice saying the same in the back of my head, but the bloodyminded side of me was determined to enjoy just a couple of days. Sometimes it is so important to throw caution to the wind and let the chronic illness take a back seat, whilst “normal” life takes over! The inn is everything that Kerry promised – steeped in history, former residents include Elizabeth I, Shakespeare and Elizabeth the Queen Mother to name but a few, and the beams, low doorways and open fires are all other worldly. The maze of tunnels beneath and around the inn were thought to have been used by smugglers and it is rumoured that several inhabitants are of the ghostly variety! No strange happenings on our watch….
Hubby was in for another surprise as we were shown to our room – he was not going to be allowed to forget his special age with the enormous helium balloons that the young engineer had arranged. With the low beamed ceilings they took up nearly the whole room….did I mention that he had also arranged for a bottle of champagne to be chilling?!
We had a wonderful meal in the restaurant and the staff were all friendly and accommodating – even if they did wonder why this woman who was struggling to walk had booked to stay in really old building with steep stairs and no lifts!! I managed though….even walking for some of the day in Rye on Saturday. A word of warning – Rye with its cobbles and hills really is not wheelchair friendly!
I still find it frustrating that I couldn’t manage a whole day out and we spent Saturday afternoon watching a film in our room, but pacing is the name of the game. This allowed me to go out for dinner Saturday night – to a lovely new restaurant called The Devil in Rye, which overlooked the gardens and walls of the ancient monastery – and then we spent the rest of the evening listening to jazz in a neighbouring Champagne & Jazz bar. So grown up, nearly sophisticated and great fun.
It is a shame that I then slept for long periods on Sunday and all this morning, but sometimes it is worth using up all those spoons in one go. So Monday Magic is teetering into Tuesday as I catch up from my slumbers……but I have found some blogs for you (even one about Elizabeth I) and hope that you will sit back and enjoy!
To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”. I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.
So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:
1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?
Guest Post: ‘Claire’s Story.’
January 1, 2019
Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)
I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds
The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue. Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.
POTS is condition that affects the circulation on changes in movement, temperature. When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out! This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.
Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.
EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage
My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic). I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).
The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history. Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms. I was given a diagnosis very quickly, but no support or follow up – was told that my management needed to be local.
But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42
To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!
Thank you so much to Bethany for having me as a guest blogger!
A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.
I met her on the “chronic illness” circuit – have a look at her site The Brainless Blogger here – but she also writes fantasy fiction and you can find some of her work under her pen name Lil Hamilton. I think you will agree her own Versatile Blogger award is very well deserved. Thank you, Nikki, so much for nominating me!
1. If you are nominated, congratulations – you have been awarded the Versatile blogger award!
2. Thank the person who gave you the award and include a link to their blog.
3. Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.
4. Nominate those 15 bloggers for the Versatile Blogger Award.
5. Tell the person who nominated you 7 things about yourself.
At the beginning of the New Year many bloggers reflect on the year that has just gone before and think ahead to set goals and/or resolutions for the year to come. I thought that I would try to do something slightly different and incorporate my seven Versatile blogger answers with my New Year post! So here goes…….
I have a chronic genetic condition, Ehlers Danlos Syndrome, which means that rather than producing connective tissue that is elastic, mine is more akin to chewing gum. It can affect any body part that has collagen/connective tissue. I can’t remember a time when I didn’t dislocate one joint or another, or experience a pain free day but my first major problem came aged 21 resulting in major back surgery, nerve root damage and chronic pain. Whilst a consultant picked up that I had a “syndrome” when I worked in his theatre as a student nurse, ironically it wasn’t until 20 years later that I was formally diagnosed at my old training hospital, University College London!
I was a nurse in a former life. It still hurts to say “was” rather than “am” – one of my greatest sadnesses to come with chronic health and disability has been losing my career and registration. My passion was “head and neck” cancer nursing and later Palliative care – I was privileged to work in both specialities for many years. 2018 marked 30 years since the start of my nurse training and I was so fortunate to be well enough to spend a weekend with some friends from my nursing set, to visit the hospital and a few of our old haunts!
I am a book worm! Remember the days before mobile phones using a torch under the bed covers to read? I was one of those kids! I still prefer proper books really, but will admit to reading nearly everything on my Kindle as easier for dodgy joints – but I remain a bit OCD with my books as I can’t stand for anyone to crease the spine let alone fold down a page corner! These days I write the odd review, belong to book clubs and will read just about anything. I go into 2019 pleased that I made my personal 2018 reading challenge (on goodreads) and hopeful that I can continue reading and reviewing.
I am a mum to 3 young adults aged 22, 19 and 16. This last year I have felt the most pride as a mum and also the most stress and angst as a mum to date – these kids don’t come with a manual and it definitely doesn’t get easier as they get older. I guess my parents would agree!! Let’s hope that the next 12 months are less of a rollercoaster….
I love dogs. All shapes, sizes and colours. I am currently broody for a pup but our old (16 years) collie cross Samson is not in agreement with his mum. He is my constant companion – a completely batty boy with special needs who we rescued aged 6 – and has seen me through the years since I was forced to retire. He is completely in tune with my bad days and is very protective of me. We also have a surrogate boy, the beautiful viszla Chester, who we have looked after for friends a couple of times a week since he was 6 months (Sam goes to Grandma on those days!) – we love him to bits. Being at home, sometimes for long stretches, I couldn’t imagine being without a furry friend at my side!
I make celebration cakes. Not professionally, but for friends and family. I have always made birthday cakes for my kids, but when I had to stop working I started to play about with some more ideas and experiment with icing. The strangest request was from a friend wanting a “Tesco” carrier bag for her husband!! The icing is becoming more and more difficult though as my joints deteriorate – rolling out a sheet is nigh on impossible with a dislocated shoulder, so I’m trying to teach hubby! Fingers crossed that I will be able to make a few masterpieces (ha, ha, ha) in 2019.
My guilty pleasure is binge watching box sets – Netflix and Prime have become my best friends in recent years and I blame my daughter for the binge watching! These days it is much harder to join in with family activities, so it is great to be able to spend time on the sofa with my lovely girl…..some favourites for us in 2018 were the finale of Sense 8, the German series “Dark” and “You are Wanted”, “Travelers” and “Anne with and E”. We are both looking forward for the next season of Dark to be released in March!
There you have it – seven things about me, with a bit of looking back and looking forward thrown in. Maybe I should have said that I don’t make resolutions – I’ve never been able to stick to them beyond the first week of January so years ago I just thought why set myself up to fail?! I am happy if I can go into the new year with some positivity and hope!
Tagged Bloggers who are versatile and interesting – great if you take part, no problem if you don’t. You are all still versatile!
It is such a busy time of the year when everyone is supposed to be jolly, enjoying the madness of Christmas shopping, wrapping gifts and dressing for parties. You probably don’t know, but food and drink play a huge role in the festivities – meals out with loved ones, chocolates and nuts, mince pies and egg nog, Christmas cake and plum pudding. The television is overflowing with chefs telling us how to prepare for a magnificent feast timed to perfection.
Shop fronts and homes are transformed into a winter wonderland as decorations and lights sparkle. The smell of a real Christmas tree invades the crevices of many a house, this one included. The sights, sounds, tastes and smells of this time of year can be truly wonderful – glitter and glamour, carols and Michael Buble, cinnamon and nutmeg, mincemeat and mulled wine.
I want to enjoy it. I want to take part and accept invitations to party. I want to bake and give gifts to friends and family. I want to feel joyful.
You are my closest companion – with me 24/7, you know me better than anyone. But the Christmas message doesn’t seemed to have reached you.
You hinder me and slow me down, meaning that I can no longer join in how I want to. The invitations turned down at the last minute, the exhaustion after one trip to the shops, the increased difficulties dressing the tree and “decking the halls”. The guilt at putting more on loved ones, being unable to host parties or bake up a storm. The food once so tempting, now leaving only discomfort and tears.
You watch the weather and as the cold and damp creep in with the winter, you ramp up the chronic pain leaving my body struggling to leave bed, let alone leaving the house. My hands fumble over Christmas wrapping, my back fails to keep me upright, dislocated joints reach a new level on the pain charts.
The expectation that Christmas should be “the most wonderful time of the year” is not the perfect mixer for brain fog and reactive depression. Some days it is a toxic cocktail.
But as you are my constant companion, I must teach you about the festive season and in turn you must teach me how to live it with you cradling me. I will try so hard to feel acceptance of you rather than resenting limitations that may be placed upon me. When I feel you knocking at the door, I will learn to slow down, to say “no”, to pace myself. My limitations will become my strength as I enjoy a slower, quieter but no less precious time with loved ones.
I know that you won’t be taking a holiday for the festive season. I know that neither you nor I can guarantee how present you will be at the festivities from hour to hour, day to day. But I do know that we must rub along side by side and cope in the best way that we can. If an outing to a party is skipped or a visit to relatives proves too much, then so be it. If it is impossible to throw off a low mood for festive cheer then so be it.
We will wake together each morning and go to bed together each night. Just like every other day, we will take the holidays as they come……but perhaps now that you know Christmas is coming, you could loosen your cradling arms just a little and give me some slack?
When a person loses their “raison d’etre”, what do they become? Blood and bone and tissues.
I have just watched a young athlete win her heat in the European championships with an enormous Personal Best and the delight on her face, in her body language, in her voice were infectious and special. The training and the hard work that she has put her body and mind through over weeks, months and years is paying off today.
The thing that drives each and every one of us to get out of bed in the morning will be individual and change at different times of our lives. Dreams and aspirations aged 20 will alter, expectations change with life experience and maturity. But what happens when that reason for being feels like it is “stolen’ away by chronic health issues?
Personally I found that something that affected me greatly was medication. The combination of strong anti convulsant drugs combined with opiates used for nerve pain combined with a night time drug usually used in severe depressive disorders, at times created side effects that were as difficult to cope with as the chronic pain for which they had been prescribed. The combination of pain, sleep deprivation, brain fog and inability to concentrate just felt like a recurring cycle – a domino effect as one thing caused another caused another in ever decreasing circles. I didn’t know whether I was coming or going and the antidepressant drug, mirtazepine, left me unable to function in the mornings – my kids, the younger two at primary school then, would have to physically get me out of bed and then I would drift off into semiconsciousness sitting on the loo. I could hear them talking to me but I just couldn’t open my eyes.
Slowly but surely it felt as if the ordinary things in life were being stripped away, including my lifelong passion for reading. I have always had a book or two on the go, and no matter how late is is, I always have to read at least a couple of pages before turning the light out to sleep. Over a period of a couple of years I found my ability to read a book diminished – despite being awake until the early hours night in, night out, I was unable to complete a book as I read the same page over and over. What the heck was happening to my brain? A friend bought me a magazine subscription for my birthday and I couldn’t even manage to read a whole article. But my pain was so severe and uncontrolled that my inability to read was the least of my problems, as some days I couldn’t imagine living another week like this let alone another 40 year years.
When joining the pain programme at St Thomas’s hospital (London), before I had my spinal cord stimulator trial, I had to agree to reduce my oxycontin (oxycodone – double strength synthetic morphine) with a view to coming off it entirely. I have written about the current opinions re use of opiates and chronic nerve pain before and about my “withdrawal” – that is not what I want to concentrate on here. My opiate dose reduced over a period of time and gradually my sleep improved along with my concentration. How is it possible that my sleep got better with no pain relief (I cannot have my scs turned on at night)? I had not realised just how huge an effect the drugs were having on my sleep and general well being – and not a good one!
Gradually my brain has allowed me to start reading again and to finish a book or an article. I found a local book club that meets monthly in the pub and we read any genre as long as it is a recent publication, so that no one has already read it – no issues to be had with discussing someone’s all time favourite! I love the fact that we don’t take our discussions too seriously and I have met some lovely new friends. My love of books led me to some social media book groups and it was here that I discovered the world of reviewing.
The fact that authors and publishers are generous enough to share their new pieces of work with an amateur reviewer like me feels amazing. I have discovered the joy of receiving an advanced copy (ARC) of a new piece of writing and being one of the first people to read it. Books have always been a part of my home and as a bit of a puritan, I would only ever read an actual book – I like the feel of a book in my hands, the smell of new paper and the beauty of a new cover and uncracked spine. But……becoming a book reviewer has converted me to a Kindle user. Don’t get me wrong – nothing competes with a brand new book or a well thumbed favourite classic – but I do appreciate having so many books available in one place and as my ability to hold a book has worsened, the ease and weight of a Kindle is perfect, particularly when lying down!
I know that authors are grateful to the band of book reviewers that are out here in the blogosphere, on goodreads and Amazon. We help to get their titles out in the public domain. For me though, I have so many reasons to feel grateful to these wonderful authors, publishers and social groups as becoming a reviewer has given me back a role and with it a sense of worth. The first time that I saw my name on a banner for a blog tour, I knew that I could still make a difference. I might not be able to hold down a job due to my chronic conditions and the unpredictability of my symptoms – but this is something I can do!
There still are days when I am unable to read, and others when I might have read the book but brain fog stops me from getting a review from my head onto paper. I have had times when I will know that a deadline is looming and the stress of being unable to write will increase my symptoms, thus starting a vicious circle. But I appreciate that I have been gifted someone’s work, something precious to them that they have poured their heart and soul into. I am entrusted to care for it and I will always do this. There may be times when I struggle to get a review written, literally when I have dislocations, but I will always read a book sent to me and give a fair, honest review. In school many years ago, I was taught how to write a book review and I have never quite been able to shake off my old teacher’s instructions – some of you will know that this means my book reviews can be a bit long. But if I have been given an author’s “baby” the very least that I can do is spend the time to give it due care in my review.
Reading and writing has given me a new purpose. It can never take the place of my lost life, but it can sit alongside it and over time reviewing has become an important motivator for me. I am reading a huge variety of genres, some that I would never have chosen myself and thoroughly enjoying expanding my horizons. I have discovered audio books and use these to help motivate me when doing physio and exercise plans – I can be often be found pacing my neighbours’ treadmill whilst listening to a thriller! It isn’t easy to do the necessary exercise to keep conditioned when everything hurts, but a good drama or mystery certainly helps to distract from pain and dodgy joints.
At times living with a chronic illness can roll one day into another into another, but amidst the fatigue, pain and failing body, I believe that it is important to have a reason to get out of bed and keep the brain “moving”. For me reading and reviewing has given me a new “raison d’etre” – something to keep my brain working, to feel some pride in and to appreciate my self worth.
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.