It feels like forever since I shared some inspiring blog posts with you. If you read my last post you will know that for various reasons writing has not come easily recently, but I something that I really want to do is to get back into the habit of sharing great blog posts with you.
Back in June I did manage to get to the Annual Bloggers Bash Awards in London and once again was able to meet up with other bloggers – some were old friends, others I felt I knew and then there were others who, along with their blogs, were new to me. I was so excited that a fellow Chronic Illness Blogger – and one who I know – the lovely Caz from Invisibly Me won a category……you must have all heard my cheers!
The hotel was beautiful, situated in a perfect London square which actually boasted a small cricket pitch. I’m not sure that they liked the look of me though as we had to use the tradesman’s entrance round the back…….this was the accessible entrance with a stairlift that accommodated my wheelchair. The design seemed so clever until it was time to go home and the young receptionist blew the electrics when he turned the stairlift on. There was no way that it was going to budge, so yours truly had to get out and sedately make my way down the stairs whilst hubby carried the chair behind me! It was nobody’s fault, but it was a good job that I wasn’t in my electric chair…..nobody would have been shifting the weight of that down the stairs!!
Meanwhile the younger male members of the family have been off gallivanting to sunny climes. The politics student went away with uni friends to Spain where they stayed in a friend’s villa on the coast near Alicante. Maybe that should read a friend’s parents’ villa….. I am certain that they are lovely, but they must be totally and utterly mad to allow a group of 10 twenty year old “boys” to use their holiday home! More recently the young engineer and friends left London at its hottest for the cooler temperatures of stunning Crete followed quickly by a trip to Pride in Amsterdam – if the photos are anything to go by they had a wonderful time in both locations. I will save stories of our hols in dear old Blighty for another day!
What of the lovely girl? Well she and her friends have had their A level artwork “Inside-Outside-Inbetween” exhibited by the Royal Marsden hospital in Sutton (Surrey branch). The hospital reached out to local schools as they wished to display local young artists’ work in both corridors and treatment rooms. A private viewing was laid on for the students alongside friends and family – unfortunately I was too unwell to be there but hubby and parents had a great evening. Apparently the food that the Marsden laid on was great – and the art was pretty good too!! Anyone who is local and interested will be able to view the girls’ art until December.
Spot proud Grandma!
The Marsden have done the girls proud
The lovely girl’s exhibit
So that must mean that it is time to sit back and enjoy some great blog posts – this week all chronic illness and health related – as ever please like, comment and share posts that you enjoy.
Isn’t it funny how sometimes the simplest of things can floor us? Not the big things – the dislocations, the brain fog or even a recent A&E visit to check out an ankle injury for fractures. Over the last few weeks a new enemy has been creeping up, slowly and insidiously until a sudden movement caused spasm and pain off the Richter scale.
Where? Back pain? Neck pain? Well they still haunt me daily alongside the dislocations, but this is different and affects everything I try to do. One evening several weeks back, my right hand suddenly drew itself up with a sudden, intense spasm into a claw. There was no warning and the pain was searing – in fact I screamed the roof off leaving no one in any doubt that something had happened. Cramp? No, this was a very different feeling as the ligaments and bones within my hand felt as if they had become intertwined and stuck in a confusing rigid medley of pain and spasm.
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Several hours later the claw unwound as quickly as it developed, but the pain, now in both hands continues. Maybe it is a repetitive strain type pain or some of the nerve pain may originate in the problems in my neck, I don’t know, but it affects everything. Holding a cup of tea, brushing my hair, holding a book……and typing! Admin duties for the Chronic Illness Bloggers and emails have been prioritised but typing is painfully slow. Writing my own blogs has slowly but surely slipped away from me.
Nothing in life is predictable is it? But life with chronic illness has “unpredictability” as a middle name – no day is ever the same, it is impossible to know how the body or mind will present itself as it wakes each day. The bigger issues, “the big picture”, can be easier to cope with, but the little things that are unexpected can be the straw to break the camel’s back. The best laid plans can be blown apart, resentment hits, brain fog distorts memory and pain can take hold. Yet life goes on with or without functioning hands!
This has taken several days to type…..hopefully normal service will be resumed soon!
Inspiring blogs has slipped to midweek again, but as I had already found the posts I really wanted to share them. I didn’t get near my laptop on Monday as hubby was filling out the dreaded tax return online – this meant he had 2 laptops and the ipad spread out in front of him and he doesn’t even have a regular job! Who knew that the tax office struggles to cope with zero hour contracts?!
The politics student has returned to university this week, but not before a trip to A&E to check out his knee. I think that I mentioned last week that he had dislocated and then relocated his knee – the pain and terrible cracking continued and we were advised by the GP & a physio friend that he needed to go to hospital to have it checked.
So I duly packed off hubby and son, with flasks and sandwiches…..no, I didn’t but probably should have done as they were waiting for the best part of last Friday. The wait we could understand – there were a lot of emergencies and the waiting room was full – but it was a shame about the attitude of the nurse specialist. Son and hubby explained the problem and were slightly taken aback by the tone used to tell them that A&E is for really sick people!
They explained that the GP had sent them and were apologetic for taking up time…….but where does someone go with this sort of problem? No you are not seriously ill, but you do have something wrong that your GP can’t deal with……no wonder so many of us chronic bodies avoid going to hospital!
Enough moaning, yours truly has had an eventful week and managed several outings between the bouts of neck pain. A curry with friends – a fellow zebra who made contact via this very blog, another reunion at my old school as Chair of the alumni group – a group only 2 years behind me so I knew them which was great, and a National Theatre Live production of All My Sons at our local cinema. If you get the chance to see this it is fantastic – Sally Field, Bill Pullman, Colin Morgan (aka Merlin!) and Jenna Coleman. Getting out of the cinema was a challenge as although the spinal cord stimulator helps with the pain it doesn’t help with the dead leg and immobility after sitting. Good job I have a husband, eh? But it is no wonder I can hardly move today and am happy I have a new furry pal come to stay for a couple of days…….meet Jensen!
The posts encompass various things that have been happening this week – Mother’s Day in the USA (read Willow’s beautiful poem), ME/CFS awareness and mental health awareness. May is the awareness month for many conditions and I will put up a listing on another post – I don’t want to miss anyone out. Don’t miss the inspiring ladies featured at Tea and Cake for the Soul. So grab yourself a drink, sit down and relax!
Did you think that I’d forgotten about “IBFY” this week? I had a blog tour spot for Monday and didn’t want to overdo the musings, so thought a midweek spot might do nicely to share these posts that I had found for you.
We survived our week with hubby away…..just!……..and more importantly he survived an activity week with 64 ten year olds. The weather was really kind to them and he returned looking more like he had been to Spain rather than to Kent, the sun tan covering any signs of exhaustion! At this end I continued to share drugs and my CBD vape with the politics student as he nursed, and continues to, his dislocated knee; there was one faint/fall/dislocation and only one set of plans cancelled. Not too bad going! The lovely girl even managed to get out of bed every morning to do her paper round without her dad dragging her out of bed.
As hubby arrived home, the eldest and a group of friends headed off for Snowdonia, North Wales….to go camping! Pitching a tent in the dark on one of the coldest nights this year – not my idea of fun and I think the young engineer’s better half would have preferred a B&B. They actually had snow and built the snowmen to prove it!
Meanwhile yours truly now has the results of my neck x ray and unsurprisingly it shows disc and degeneration problems in both the cervical and thoracic spine. “Where shall we refer you?” pondered my GP……um, how about somewhere that can arrange new bodywork! I think that my neurosurgeon might go off for a very long holiday when he sees my name on the Back Pain Clinic patient list again. At the moment I have no expectations and want to avoid more surgery – be it on my shoulder or my spine……time will tell!!
I hope that you enjoy this mix of blog posts that I have found this week – I have finished with a short video to highlight pain in Ehlers Danlos Syndromes Awareness Month. So sit back with a favourite cuppa and happy reading!
For some time now I have been looking for a garment that would give my ever dislocating shoulders some support and yet that I would also be able to actually put on without dislocating said shoulders! More of this below. The Active Posture products were recommended to me and the company gave me a posture vest to trial in exchange for a fair and honest review.
Posture clothing: all you need to know
It can be difficult to keep an upright posture throughout the day, which is where posture clothing from ActivePosture® can help. Posture clothing activates muscle memory to help you achieve an improved, upright posture.
Posture clothing can be a comfortable and practical solution for problems induced by poor posture, or it can act as a supplement to training, exercise and physical therapy. Your posture has an influence on your physical health and overall well-being, so having aligned posture benefits us during work, training and in everyday life.
How does posture clothing work?
At ActivePosture.co.uk you can purchase clinically tested and medically approved posture clothing from leading manufacturer, AlignMed®. Our products are inspired by the concept of Kinesio-taping, which stimulates muscles, improves blood circulation and can aid in maintaining an aligned posture. Our posture clothing can be worn in everyday situations, whether it is during physical activities or when you are stationary.
Who is posture clothing suitable for?
Pretty much everyone can improve their posture from wearing posture clothing. It is also particularly beneficial to supplement physiotherapy and training, however, if you have a recent injury, we recommend consulting a physiotherapist or doctor before use.
ActivePosture offer products for both men and women in several different styles and colours. There is a classic v necked vest top, in petrol blue, white or black for gents or blue, nude, white, black or burgundy for ladies. A zipper fronted vest is available in both black and white for gents and ladies. There is also an AlignMe Interactive bra available in 4 colours.
The website gives clear instructions to measure for your posture vest and suggests that if between sizes you should opt for the smaller as the top must be snug. At 5 feet 8 inches and taking a 34 A/B bra, I wear a UK size 12 and ordered a Medium which fits well. I can’t comment for fit for ladies with a larger bust size, but please be aware that the vest is not fitted with cups.
My vest arrived quickly and was beautifully packaged, creating an excellent first impression for the product inside. The vest itself is made from a mixture of nylon, spandex and polyester and beautifully constructed with Neuroband support straps throughout the lower neck, shoulder and back area. These bands are all made from different levels of elasticity and exert different pressures on the body. I had requested a zipper version for ease when putting the vest on and taking it off – this is because I have recurrent dislocations, arthritis and chronic pain particularly in my right shoulder.
My Trial Period
I have had my vest since the beginning of February and was advised by the company to gradually build up the wearing time. The recommendation is to start wearing for an hour per day, but as I have a specific condition that means my connective tissue and joints work differently to the norm, it was suggested that I use it for 30 minutes per day.
The vest does feel tight initially and the shoulders need to be fitting correctly – if the vest is the correct size it is possible to feel a gentle pull across the shoulder blades and muscles, and this increases if the wearer begins to round their shoulders. There is also support around the lower back lumbar region too.
After building up wearing time over a 2 week period, I then opened a drawer and suffered a severe (even by my standards) dislocation which left my arm hanging low, immobile and in a great deal of pain. It took approx 2 weeks before the humerus would even pretend to stay in the socket…….and most days it continues to slip out as I cough, sneeze or just move! During this initial fortnight my pain was too severe to wear anything snug, but I had a long planned theatre trip and made the decision to wear the vest in order to try to support my shoulder – my main reason for wishing to trial the product.
I found the ActivePosture product to be of a high quality and very comfortable to wear. I have washed it several times, following the manufacturer’s instructions and it has maintained the shape and washed very well.
Please remember that my anatomy is slightly different and I am looking at the product for a different support – but I believe that for pure posture support and to run alongside physio programmes, this product works very well. I have worn the vest whilst sitting both at a table whilst typing and also relaxing in an easy chair and was definitely able to feel the posture support that it encourages.
I am not unrealistic and did not expect the vest to hold my shoulder in socket or to prevent my dislocations. If only it were so simple! My physio has always said that when dealing with my shoulders he must forget all that he has been taught, and instead work with me in the opposite way to how he would treat everyone else!! But I had been hoping that the vest would offer my joints and lower neck some support and I am delighted to report that it does. I have not worn the vest whilst my shoulder is completely out of joint – to be honest it is difficult to wear any top – but I have been wearing it when the shoulder/s are in the normal (for me) state of constant subluxing. My preference is without a bra underneath. I have found that the top acts rather like a compression garment and offers my stretched muscles and ligaments gentle support, whilst I hope also encouraging the muscles to do a little work themselves. (Please note that I do regular exercises when I am able to prevent too much deconditioning).
I have also noticed support across the lower neck where I have several vertebra that have a tendency to “pop” in and out. This leaves me at times with a “dowager’s hump” and I genuinely believe that the Neuroband support mechanisms in this vest have helped with better positioning and pain control. Many of you will also be aware that I have had major surgeries on my lumbar spine over the years, and a very pleasant surprise has been that this vest also gives me support and compression around this region – gentle compression (actually sometimes full on pressure!) really helps manage my nerve damage and pain.
So what of that theatre trip? Whilst still in an immense amount of pain and needing morphine for pain management, the vest helped me to sit through a loud and vibrating musical theatre experience. Since then I have also worn it to cinema film showings and out to dinner – it sits neatly and snugly beneath clothes and I have increased my wearing time. It is important to understand that the vest should be used in normal circumstances as an aid to better posture, so shouldn’t be worn all the time. You must work your own muscles too!
Have there been any negatives?
The vest is made from synthetic materials so can become quite hot and sticky in warm conditions – however it does look like a “top” so I have stripped off on the odd occasion and still felt dressed!
The ActivePosture products are expensive at a first glance – particularly as many with chronic conditions are unable to work and like myself rely upon benefits for income. The vest top retails at £99.95. However I would now say that for a product that has given me both support with my joints and my pain that it is worth the expense……I can see the research and engineering that has gone into creating a quality product and I would rather forego other clothes/meals/coffees in order to own a product that will give me support on those bad days.
In fact my final endorsement has to be the fact that I have been bought some more vests by a relative (taking advantage of the current offer!) as I love it so much!
The ActivePosture vest is a 5 star product for me!
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The company currently has a special reduced price for the products and are offering a volume discount – visit the shop here. (Note: this is not an affiliate post and I do not benefit from any orders made)
For information about research behind the product visit the site here.
I have just read a post that I could have written myself – it reminds me of a conversation that was had very recently in our house. When one half of a couple lives with a chronic condition – be it pain, disability, depression – the “normal” expectations of a relationship change, the boundaries move as partner and lover morphs into either carer or “patient”.
Pamela writes with honesty and gives some realistic suggestions for everyone in her post on There Is Always Hope blog.
I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:
I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.
How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple.
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!
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.”