The ActivePosture Vest – My Trial and 5 Star Review

Disclosure

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.

ActivePosture

 

Background from the ActivePosture website

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.

 

 

The Product

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.

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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.

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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.

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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.

My thoughts

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).

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Not quite the models from the website, but you need to see the vest on yours truly!

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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Active Posture Pin

 

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.

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Monday Magic – Inspiring Blogs for You!

Welcome to the last week of March and another Monday Magic on a beautiful spring day.  We have managed two cinema trips this week – yes, two! – to see very different films but both equally striking.

Monday Magic Inspiring Blogs for You! (7)

The first was Bohemian Rhapsody and I know that we are very late to the party.  The portrayal of Queen and particularly Rami Malek’s performance as Freddie Mercury were outstanding (if sanitised!).  It is difficult not to be swept along by the soundtrack of Queen’s greatest hits and then for those of us who remember Live Aid, the depiction of the concert in the old Wembley Stadium was a true trip down memory lane.  What I hadn’t expected was to be so overcome with emotion towards the end of the film and find myself in tears by the end.  The depiction of a hospital waiting room and a young, emaciated man sporting a a very particular lesion on his face took me straight back to the late 80s and my London teaching hospital.

It was an extraordinary time to be working in one of the few hospital’s with a dedicated HIV and AIDS unit (see my previous posts here and here).  As young nurses we were confronted by fear and ignorance of a disease that then carried a death sentence and also by a greater intolerance of same sex relationships.  I can remember being asked if I had to touch the patients, or if they had different bedsheets and what happened to their cutlery after they ate!!  There were question marks about applying for mortgages and if you sustained a needle stick injury the subsequent HIV test would definitely reduce your chance of being granted a mortgage.  Then there was the series of commercials run in the UK by the government – brutal, scare mongering and to the point.  But for me the film brought with it a sea of faces – young men – all robbed of life at such a young age.  It was the first time that most of us had been confronted by the certainty of death in patients who were in our own age group.  We were comforting parents and getting to know groups of friends who might have been our own.  Those names and faces remain with me all these years later and as Freddie Mercury declared that he wouldn’t be a poster boy for HIV on the big screen, the tears flowed as I was transported back to that ward in 1990.

Gideon-Mendel
The Middlesex Hospital from Gideon Mendel

Last night we went to a special cinema screening to commemorate the 75th anniversary of the “Great Escape” – that is the actual escape during World War II that the Steve McQueen and Richard Attenborough film was based on.  Hosted by Dan Snow, historians were joined by family members of some of the actual RAF men who staged the escape in 1944, and also by actors and crew from the film made in 1963 to depict the events.

One of the stuntmen who set up the iconic Steve McQueen motorcycle stunt at the end of the film had been flown in from New Zealand – he had some stories!!  I was really struck by the comment that it was an officer’s duty to attempt to escape and to create as much turmoil for the enemy – the Germans in this case – as possible.  These men almost certainly did not expect to get home if they managed to escape, but they did plan to continue fighting and to be a thorn in Hitler’s side.  Meanwhile the RAF were amongst those also remembering the men in Poland at the site of the POW camp, where the prisoners had dug out 75 years ago.  It was a very long (nearly 5 hours) but worthwhile evening……even if I couldn’t stand up by the end!!  When I popped my ankle out, hubby said we needed the inflatable evacuation aircraft chutes to get me down the cinema stairs….cheek!

So today I have been recuperating from my night out and have found a great variety of blog posts for you.  I hope that you enjoy everything from the fire eating gutsy goddess to some fantastic tips about plastics and the planet…..sit back with a cuppa and enjoy!

 

https://laughingatthesky.blog/gutsy-goddess-tessa

https://relationshiphelpers.net/083-personal-growth-is-self-care-selfish/

https://nolightwithoutdarkness.com/2019/01/09/beat-irrational-fears/

https://ablissfulblue.com/people-pleaser/

https://wellnessmunch.com/2019/03/11/cinnamon-the-super-spice-in-your-kitchen/

https://www.crestingthehill.com.au/2019/03/expectations-to-free-yourself-from.html

https://carolcooks2.com/2019/03/25/plastic-the-latest-news/

https://fightmsdaily.com/2019/03/24/the-rant-about-healthcare-insurance/

https://lightscameracrohns.com/2019/03/25/why-my-husband-is-much-more-than-a-caregiver-dr-phil/

https://itrippedoverastone.com/2019/03/19/fake-it-until-oh-stop/

Please leave some comments, like the posts and make someone’s day!

Have a great week,

Claire x

Monday Magic Inspiring Blogs for You! (8)

 

 

“I Need You to Need Me” by Pamela Jessen

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.

intimatecouple

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.

To read the full post please visit There Is Always Hope Now

Supporting People on Rare Disease Day – My Story shared on Despite Pain blog

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.

Following on from my post last week, Why We Need to Support Rare Disease Day, I’d like to support a few people who have rare diseases by sharing their stories.

To read the rest of Despite Pain’s post and to read MY story please click here

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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
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”!
  • Loss of some sexual function/sensation

For more information read:

Science Direct

British Journal of General Practice

New Beginnings from the Storm – A Chronic Voice Link Up

This is written using the prompts given by Sheryl for February link up at A Chronic Voice

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New Beginnings from the Storm

The storm within my body brews

Changing the outlook daily

Swirling, drifting, creeping

One step forward, three steps back

Adjusting to the physical.

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What of my mind though?

How does the mental deal with the physical?

The physical is tiring

But the mental is exhausting,

Crushing the buds of hoping underfoot.

Some hope slumbers beneath the pain storm

As the first weak spring rays break out

Warming both my body and mind

Helping those surviving buds

To thrive and blossom.4k-wallpaper-baby-s-breath-backlit-1312449.jpg

Become something positive and hopeful

Harnessing my body and mind,

The physical and mental,

Into befriending both myself

And others living just like me.

Our virtual world of chronic storms

Brings the warmth and sunshine

Of support and care,

The awakening of new beginnings

New friendships, new hope.

 

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A Rare Chronic Illness, A Book Review and a Love Letter – “Leo and the Lightning Dragons” #LoveBooksGroupTours

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.

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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.

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Photo by Snapwire on Pexels.com

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!

5 Stars for both the story and the illustrations

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Photo by rawpixel.com on Pexels.com

Buy here:

Amazon:

Waterstones

Find on Twitter:

@FledglingPress

@leolightdragons 

Website: http://www.leoandthelightningdragons.com/

About the Book and Author

Leo and Mum

“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.”

Taken from the website

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Pain, Pain Go Away…When Pain becomes All Consuming and Overwhelming

I woke yesterday morning very early, having only dropped off to sleep in the early hours.  A couple of hours of unsettled sleep and I knew that my bedfellow, pain was going to kick me about for the day.  Despite shivering in the cold early morning, there was that unwelcome yet familiar thin, feverish sheen of sweat all over my body that only comes with deep, intense pain.

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Pain,Pain Go Away

 

The strange thing was that I couldn’t quite tell where the pain was.  Start from the feet and move upwards:

  • feet and ankles: pain, check; left nerve pain worse, check
  • lower legs and knees: pain, check; left nerve pain burning, check
  • thighs: burning, check;
  • hips: can’t move them, searing pain, check;
  • lower back: don’t even go there, hurts too much, check;
  • chest: every breath is creating pain somewhere else, check;
  • shoulders: both dislocated: do not move, check;
  • arms and hands: numb, yet burning, check;
  • neck: spasm and screaming, check;
  • head: did I drink last night???
  • face and teeth: really??!! Yes!

The problem with this pain is that when it peaks nothing will help to reduce it.  No amount of drugs, distraction, heat or other remedies will help.

Pain is deeply personal.  Your pain will be different to my pain.  My own pains are different – the neuropathic back and leg pain I experience from nerve root damage is very different to my other EDS pains. Our pain might be in the same part of of bodies, but we will probably describe it differently and it will behave differently.  The same bedfellow taking a different journey to reach the same location.

Pain (speaker)

When my constant companion reaches these dizzy heights, even my spinal cord stimulator struggles to jumble and alter the pain messages received by my brain.  Some professionals believe that chronic “neuropathic” pain signals are processed by the brain differently, making it more resistant and much harder to treat.  I honestly don’t know and when it reaches these levels, I don’t care.

“Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.” NHS Inform

“Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.” WebMD

 

There are many definitions for “pain” available and there are also definitions on American sites & Wikipedia for “intractable pain“.

The ensuing brain fog means I lose clarity of any situation and irrational behaviour follows. “Mum, why are you trying to do housework like a mad woman?” asks my teenage daughter…..just because!

  • because I can’t sit still
  • because my brain has gone into overdrive yet feels like candy floss
  • because I can’t think straight
  • because I can’t stand still
  • because I feel sick
  • because I have to do something
  • because breathing hurts
  • because doing nothing hurts
  • because doing anything hurts
  • because I don’t know what to do to make it just F.O!

Pain on rain

Remember the old rhyme “Rain, Rain Go Away, Come again another Day”? Mine goes like this “Pain, pain go away, don’t come again another day!”  In this state pain killers just make me vomit, they don’t help anyway.  My beloved heat pad gives a little relief for a short period, but my body seems to know that the external temperatures have dropped despite central heating and layers of clothes.

This pain is exhausting and all consuming.  Eventually I am overcome and sink into a heavy, pain ridden slumber under a weighted blanket yet wake several hours later unrefreshed and still in pain.  What is to be done?  Watch the weather forecast, curse the temperatures (I know Chicago and other places have it a LOT worse, but my body doesn’t know that and anything near zero degrees is horrendous), try distractions and sit it out knowing that this peak will pass.

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Another day may feel wasted – another day of being unable to function, to be online with like minded pals, to read, to watch TV, to listen to music.  But this will calm, it will reduce from the peak to a trough and tomorrow is another day.

So today….I am here, I survived.  I am still in pain and currently sitting charging my spinal cord stimulator as I really can’t cope with turning it off during this cold weather.  The Six Nations rugby is on and feel like I have been in one of those scrums! My other pains are vying for attention now….when the nerve pain is at its worst the others fade into background noise, but today the shoulder and gut pain are shouting loudly.

But here I am typing, smiling, talking and tomorrow is definitely another day!

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Some Ramblings for January Prompts with A Chronic Voice

Every month I have great plans to take part in link up parties and then life seems to get in the way of writing.  One link up that I particularly love is Sheryl’s on A Chronic Voice where she gives prompts aimed specifically for people living with chronic illness to express themselves and share experiences.  January seems like the perfect month to join the party again…..so here goes!

january prompts

Dedicating

This is a great prompt for a new year isn’t it?  It could also be very cheesy!

I think that I would like to be dedicating more time and energy to working with fellow bloggers this year.  Sometimes I see others who give so much of their time to commenting on and sharing the writing of others (Sheryl at A Chronic Voice, Caz at Invisibly Me, Esme at Esme Salon, Sue at Sizzling Towards Sixty – to name but a few) that I feel a bit inadequate in my feeble attempts.

So maybe I should say that I will try dedicating my own time to working effectively and to stop procrastinating.  I had a teacher at school (Latin) who used to ask us “what is the thief of time” to which we 11 year olds would chant “pro..cra..sti..na..tion” without having a clue what it meant. Sir…I get it now!!

 

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Establishing

I really need to start establishing some proper self care routines that will see me through both the good days and the bad days.  For me self care revolves around reducing stress levels, which in turn will help keep the pain at bay.   At the moment “self care” – healthy eating, regular exercising (in our neighbours’ gym – so lucky!), pilates, meditation, mindfulness, rest etc etc – or maybe I should just say putting myself first in my schedule, well it seems to come way down the list of priorities and almost feels rather decadent.

 

love begins at home

Breaking

I’ve written before about chronic pain and illness being my constant companion and there are so many times that it feels like my companion is putting up barriers for me or tying me down in knots.  I want to be breaking through barriers and ties, physical and mental, that are holding me back and stopping me from feeling like the person I used to be, being the person I can be.

 

barrier

 

This might mean breaking some of the rules that I self inflict and wrap myself up in – one is the need for a clean, tidy house!  The biggest problem is that my idea of clean and tidy does not quite match with the rest of the family……this causes me more stress than anything else, and whilst I will try to be more laid back, this will be a tough one for me to break!

Breaking crockery is also something I’d like to do less of in my kitchen!!  Dislocated wrists and thumbs frequently equals dropped plates and mugs……BREAKING!!

Strengthening

Strengthening has to apply to my core!!  Whilst I was still mobile and fit, I practised yoga daily and attended classes several times a week, and had even been asked to train as a yoga teacher by my teacher!  My back has been troublesome ever since my surgery aged 21, so it has been important to keep my core muscles strong to support my weak back.  I wouldn’t boast a 6 pack, but I had a very flat stomach which pinged back after each of my 3 caesarian sections!  But….since turning 40 and my mobility and health have gone into free fall, those core muscles have gone into hiding……apparently muscle memory is a thing, if I can only coax them out.

 

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Allowing

I am not very good at just allowing myself “to be” – to accept my own limitations that come with my condition, to acknowledge the bad but to celebrate the good.

I want to allow myself to take a rest without beating myself up; allow myself to say “no”; allow myself to sit and just be without feeling guilty.  Most of all I want to allow myself to accept my conditions, warts and all – accepting is not a weakness, I believe it is a strength and liberating!

 

to be

 

So there we have it – my ramblings to add to the thoughts and writings of other bloggers that can be found here on A Chronic Voice. I hope you enjoy them all.

Update….as I type I have a new cleaner in the house – a lovely lady who works for a friend who said she could fit me in…..hurray.  Now I just need to make sure I don’t fall into the trap of cleaning before she comes – just nagging the kids to make sure that the floors in their rooms can actually be seen to vacuum!!

Claire x

My Guest Post “Claire’s Story” on Young, Sick & Invisible

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.

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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

Claire S.

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!

 

Old Year, New Year and being a Versatile Blogger

A few weeks back I was nominated for the Versatile Blogger Award by the wonderful Nikki, the Brainless Blogger.

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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!

THE RULES:

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. 

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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…….

  1. 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!
  2. 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! img_1650
  3. 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.
  4. 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….
  5. 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!

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    My old boy Samson
  6. 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.
  7. 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!250px-darknetflixposter

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!

Lorna at Gin & Lemonade

Orla at Fancy Paper Blog

Anindya at My Daily Journal

Debbie at Debs World

Josy at A Walk and A Lark

Jo at A Journey Through the Fog

Rhiann at My Brain Lesion and Me

Sam at My Medical Musings

Lainie at Trend-Able

Sue at Sizzling Towards Sixty

Kerry at Kerry, Life and Loves

Pamela at There is Always Hope Blog

Jen at Tripping through Treacle

Liberty at Liberty on the Lighter Side

Arv at Jaipur Thru My Lens

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I could have tagged so many blogging friends here – some are other chronic illness bloggers, others I have met in groups or follow.

Enjoy and have a very Happy New Year!