Category: chronic pain

“it’s all in your head” – a project about me by my daughter

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome7 Comments

I’ve been invisible on the blogging scene for months now. I couldn’t explain why, but writing just seemed so difficult and I couldn’t put down words – not for the blog nor for reviews. At times the tiredness, fatigue and brain fog has been overwhelming – I accept that depression and Long Covid were setting in too.

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My lovely girl undertook an art foundation course at university this year – just the right course to be studying during a pandemic when the universities have had to close their physical doors. Imagine doing an art course over zoom and actually producing the art. So we found ourselves living in an art studio as the paints, pencils, canvases and sculptures gradually infiltrated into every part of the house. Back in the summer you would have been excused for thinking that my washing line was full of dripping body parts! I will explain….

The final project of the year needed to be a piece that would push the lovely girl to her limits creatively and also to explore a subject that she is passionate about. She chose to look at living with chronic illness, with a genetic condition and then more specifically how it feels to live with our genetic condition : Ehlers Danlos Syndrome. Her plan was to make a short film and who better to be her subject than her mother. She spent hours interviewing and recording me, some on good days, others on real brain fog days – I actually sound drunk in some of the recordings, although not a drop of vino had passed my lips! How many people like hearing the sound of their voice? Just imagine hearing it over and over again as it is used for the “sound track” for a film – it was awful. Hearing my speech slurred nearly brought hubby and me to tears.

It was during her time making this film that my lovely girl told me in no uncertain terms that I need to start writing again – she can see a difference in me when I am writing and interacting with my global body of chronic and blogging friends. She is now away at university studying liberal arts and pushing herself out of her comfort zone, and has inspired me to push myself. So without further ado I am sharing the link for our short film with you and hope that this is a fitting re-entry to my blogging world.

“it’s all in your head” https://vimeo.com/548817170

Farewell My Chronic Companion

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain30 Comments

This is the first time that I have managed to write this year – that is in 2020 – for so many reasons. How is it even possible that we are in 2020? Is it too late to wish you all a Happy New Year? I hope I can just about get away with it, although many of you will have already done “dry January” or “Veganuary” and might be well into “fit Feb”!

Farewell My Chronic Companion

I have felt so low, have had so much pain and have just not been able to write anything worth reading.  I am so sad.  Before Christmas I lost my chronic companion, my elderly fur baby, my dear old dog Samson.  Never did I imagine just how hard his loss would hit me, never did I imagine how many tears I would weep.  This daft, crazy, hairy boy stands for so much more to me than just my pet.

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Let me tell you about Sam.  Six months after I first went on long term sick leave from my nursing job, I had begun to accept that the chronic pain in my lower back and leg were not going away any time soon.  An epidural had caused a CSF leak and the cocktail of drugs that my old hospice consultant had put me on – pregabalin, oxycodone and mirtazepine – were not touching my pain.  The likelihood of returning to work as a ward based hospice nurse was looking highly unlikely.  The kids wanted a dog, but with us both out working very unsocial hours it was just not going to happen.  One fateful Sunday I made a throw away comment that as it was looking unlikely I would be going back to work “maybe we will get a dog sooner than we thought”.  The young engineer, aged 12, went online and immediately started searching animal rescue charities……

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To cut a long story short, I received a telephone call to say that our family had been matched with Samson – help, hubby had been at work and had no idea what was going on.  Sam needed rehoming as his human mum in Wales had been taken in to a hospice and his human young siblings were going to live with grandparents so “you don’t need to worry about the children as he is used to them”.  Ever a sucker for a sob story how could I say no? “Claire, what on earth have you done?” or words to that effect came out of hubby’s mouth “you can’t even stand up, let alone walk a dog!”.  Within a week we had been visited to check our home, garden and family set up, and found ourselves travelling to a foster home to meet him…..and bring him home.

You see hubby and I fell in love immediately with this beautiful, shaggy collie/retriever cross.  He was timid and terrified of hubby, and when he wouldn’t stay in the boot of the car managing to squeeze past the mesh dog guard, we probably should have guessed that there might be fun ahead of us.  Sammy and I bonded that night on the back seat of the car as we sped round the M25 motorway. He was shaking like a leaf but gradually settled with his head on my lap, looking up at me with big soulful eyes – from that moment he became my biggest fan, my protector and my constant companion.

Over the next months as my own pain issues worsened, Sam’s own “foibles” (sounds better than problems!) started to surface.  From day one he was wonderful with the kids, was house trained, never ventured upstairs and was happy to be left in the kitchen when we went out. But……it soon become apparent that he had never been socialised with other dogs, had probably been abused by a man and was terrified of so many things. He tried to round up cars and bikes and barked at anything that moved when we took him out. At this point we were beginning to think that the rescue charity hadn’t quite told us everything……..(if they knew!).

I had my first back fusion whilst Samson started at “special” dog training classes – that is classes where the training was done by other dogs, yes really!!  Whilst I was being prodded and poked with injections, physio and scans, Sam was assessed by the behavioural specialists at Dog Communications. He was deemed to be special needs – if human he would be on the autistic spectrum we were told – and the teaching dogs had picked up on his nerves and anxiety as they didn’t respond to his barking. Over the years we found few dogs did respond when he barked frantically.  Meanwhile I had a spinal fusion with bone grafts which failed to relieve my pain and actually accelerated my failing mobility and EDS problems.  But I now had a constant companion, a wonderful presence in the house to talk to, laugh with and cry with.

 

Our journeys ran on parallel rails as Sam’s special training was abandoned and yours truly had to accept that another fusion was necessary.  We really did give that training a good go as the young engineer (then just entering his teens) took Samson every Saturday morning to an often muddy, wet field at a local smallholding.  There they walked together around the edge of the field, whilst the other dogs were taught to socialise with various interactive activities.  Sam never stopped barking when the other dogs were around, and the canine crowd never took any notice of him. Eventually the trainers felt that actually our boy (maybe boys if we include the young engineer) was finding the whole experience too stressful and wasn’t getting any benefits.

I meanwhile had to accept that another fusion was a means to an end.  Without corrective surgery first – fusion at the correct point of the spine! – I couldn’t be referred for spinal cord stimulator consideration.  Eight hours of surgery and four nights in hospital later, I returned home battered, bruised and knowing that I had permanent damage to my nerve root. The consultant had been able to identify an actual problem and I knew it wasn’t in my head. How many times had I cried onto that black, fluffy head that no one understood and people thought I was imagining it?

Sam was there waiting for me on my return home, as he was after every trip away be it for hospital stays or just a few hours.  Over the years he knew when I was having a bad day and as I started to faint frequently as my POTS symptoms worsened, he began to anticipate it and was always there when I came to on the floor – ready with a tail wag and a lick of concern.  The last decade saw my movement and mobility deteriorate and as I worsened, so did Samson.  My decline was due to a myriad of health issues, Sam’s due to old age.  We never knew exactly how old he was, but last year he was at least 17.

We both started to experience increasing problems from arthritic joint pain and two years ago, as I increasingly had to mount the stairs at night on hands and knees, Samson became agitated at night downstairs.  Initially he would watch me climb the stairs and settle at the bottom, but soon he wanted to be upstairs and sleeping at my side.  Suddenly I was stuck between two snoring boys!!  This only lasted for as long as he was able to climb the stairs and last summer the pattern was broken after a week spent at his human grandparents’ home.

I think that it is commonly accepted now that animals can be so beneficial to our health in a multitude of ways and Sam definitely became a therapy dog for me. A mad, barking, exceedingly hairy one, but I knew that I was his number one. He followed me wherever I went even nudging the toilet door if he thought I had been in there too long.  During the increasingly frequent “bad” days when the pain and dislocations have become hard to cope with, he has always been there to comfort me and I loved him in return.  Towards the end of the year he was having more problems walking and couldn’t stand up on the wooden floors in the house.  I actually bought him little doggy non slip socks and the first time that I put them on, he walked as if he was wearing concrete boots – but they did help.

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As a family, we knew that a difficult decision lay ahead of us – the vet had already warned us that Sam had a dental abscess that couldn’t be healed by antibiotics alone.  But at such a great age we weren’t sure that surgery was the right thing to put him through.  Our aim was to keep him happy and comfortable and to see both boys come home for Christmas – he seemed on track.  Then one evening he began to behave strangely – even by his standards.  He was unable to walk in a straight line and kept walking round in circles, and then as the night progressed he became increasingly distressed. Hubby and the lovely girl spent the night on the floor camped out by his side, whilst I spent it feeling guilty that I couldn’t be on the floor with him.

The difficult decision had been taken out of our hands and by 9am hubby and I had arrived at the vets.  The journey there was awful as Sam cried in distress and I knew that his well being had to come first.  But as the vet examined him and diagnosed a probable brain event, the sudden realisation that I was about to lose my beautiful boy hit home.

The journey home was incredibly quiet as we both tried to “be brave” and hold it together. I failed completely, but hubby had to drive.  The feeling of walking into the house and knowing we had left him behind was indescribable.  Hubby lost it on seeing those silly little non slip socks…….then we had to call the boys with the news.  My guilt that I couldn’t keep him going until the politics student returned from university still hasn’t gone yet. I knew that I would find it hard, but I didn’t know just how tough it would be to adjust to not having my constant companion with me.

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I miss him every morning when I come down the stairs, every time I come home to an empty house, every evening when I’m not being pestered to get his dinner. I have refilled his water bowl, heard him snuffling in the night or caught the sound of his feet running down the steps in our back garden.  If you had asked me a few months ago if I thought it possible to miss his barking at the back gate, I would have thought you mad…..but yes, I miss that too.  Most of all I miss his unconditional love.

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I have recently started the application process to be paired with an assistance dog, something I had been looking into before Sam died.  It is completely irrational, but I feel so guilty.  There is a huge Samson shaped hole in my life and it represents so much more than my pet – my protector, my number one fan, my chronic companion.

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Some Chronic Pain Thoughts – A Chronic Voice Link Up

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain11 Comments

Every month Sheryl at A Chronic Voice hosts a link up for chronic illness bloggers giving prompts to share thoughts and experiences.  The prompts for September are Finding, Researching, Dating, Reusing, Recounting…….

Some chronic pain thoughts

September has rolled in and I find myself thinking about my pain – specifically my chronic nerve pain – even more than at other times.  This month is the anniversary of the trial for my spinal cord stimulator implant and I can’t help but find myself RECOUNTING the events that led to this.  The ongoing and relentless feelings from the lower back down to the toes – electric shocks, burning, creeping, cold, running fluids, sharp, creeping – to name but a few of the words that describe nerve pain.  Drug after drug, surgery after surgery and the accompanying feelings of hopelessness as each fails to bring some relief to this untameable beast.

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Another referral followed, this time to a pain clinic – but which health professional would stick their head above the parapet and take me on?  At some time most chronic pain sufferers will experience doubt – doubt about the physical symptoms being experienced, doubt about your own sanity and doubt as to whether family and friends believe you.  “How can it be possible to have so much pain if nothing shows on a scan?” “Try not to think about it all the time” “You need to pull yourself together” – just a taste of the messages that might be received.  By the time I was under the pain clinic in London, I was FINDING myself regularly questioning whether the pain was in my head, how I could carry on living like this and just what would the expectation of the clinic psychologist be.  I knew that my referral was with a view to having a spinal cord stimulator implanted, but I also knew that I would have to fulfil certain criteria first including attending a pain course. Most pain courses will have a large psychological element and this was no different – over the next fortnight we attendees would be FINDING ourselves sitting on a “metaphorical” bus with our fellow passengers representing the parts of life affected by our chronic pain: body, mind, loved ones, employment, friendships, emotions, self esteem, social interaction, sleep, finances, independence….the passengers were endless and deeply personal.

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It was important, and remains the case, to understand that our chronic pain cannot be completely alleviated by drugs and that no one should medicate to do so – as discussed recently by Chronic Mom – or by a device such as a spinal cord stimulator.  In fact the medics were very clear that this form of  symptom control will not help everyone and may even make some symptoms worse.  The months between leaving the relative safety of the course and returning to have the trial procedure were spent RESEARCHING spinal cord stimulators/neuromodulation and exactly how it might help mask chronic nerve pain.  This led me to the world of forums, self help/pain groups and blogs – what an abundance of information and support is out there.  Sadly there is also an abundance of suffering out there and at the time I was staggered by both the number of people living with chronic illness but also by the outpouring of support that I received.  I can honestly say that this led me to decide the night before my trial surgery to start my own blog for both family and friends and to offer my support/story for others.

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Hubby recalls the morning of the trial clearly and says that it was the most nervous he had ever seen me before surgery – and in many ways it was far less invasive and much shorter than my other ops, including my caesarian sections!  I felt physically sick and very scared to the point of standing on the doorstep of Guy’s Hospital, London at 7.30am and declaring I was going home.  Why did I feel like this?  I think it was the genuine fear of the future if it didn’t help – the fear of living alongside this pain with no control or relief for the next 40 or more years.  How many of my chronic pain friends have found themselves in this situation at one time or another, I wonder?  My guess would be the majority and this would cover a huge variety of different pains – maybe you can share with me!  This fear can be mentally draining and lead to psychological trauma, depression and even suicide.  I have been fortunate that the implant and connected wire/electrodes sitting snugly by my spinal cord do give me some relief, but there is a constant fear that one morning I will wake up, switch the device on and find that the wire has moved or the pain just is no longer covered by the device.  Of course this only covers one of the many pains weaving in and out of my body parts – at the moment I would love to have it extended to cover the nerve pain running from my neck to my fingers!  What a pity there is no easy fix, no magic wand for all our pain types.

So this brings me on to RE-USING some of the techniques that we were taught during the programme to help to manage pain.  These were all well recognised methods including:

  • gentle exercise – to improve physical fitness, stamina, muscle tone, spacial awareness and a sense of well being.  It is well documented that for back pain particularly,  immobility will often increase pain and muscle spasm.
  • mindfulness and/or meditation – including using guided imagery
  • breathing techniques and relaxation – to help challenge negative thoughts and stress which can increase pain levels
  • recognising and understanding the root causes of chronic pain – including how medication may or may not help to reduce pain
  • accepting that chronic pain can rarely be cured but that it is possible to move forward to live a full life
  • heat therapy (heat pads, wheat bags), cold therapy, hydrotherapy
  • pacing – learning to pace oneself in order to undertake daily tasks from washing to socialising
  • social interaction and talking – including talking therapies
  • combining all of the above to cope during a flare of symptoms

I am constantly reusing these techniques in order to live day to day with my own chronic pain.  It is important for me to have realistic and attainable expectations and yet still be able to live – remembering some days this is easier than others!

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So just how do I introduce the word DATING into this post?  Well my dating these days consists of a calendar highlighted with a series of “dates” with different hospitals and specialities – I believe that rheumatology and gastroenterology are to be personal highs in the coming weeks.  Add to this a mix of date nights with the spinal cord stimulator charger to ensure my internal battery never runs out(!) and binge watching favourite Netflix shows (currently iZombie) and you will be starting to get the picture of the heady extent of dating in the senior PainPals household……

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To read other contributions to this month’s A Chronic Voice link up visit here!

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This is also shared to Esme’s Senior Salon part of the Sharing, Inspiring and Promoting Bloggers group

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A Zebra Returns – when a Flare combines with Brain Fog and equals a Blog Drought

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain24 Comments

Why is it that chronic illness can leave you feeling like a hypochondriac? When one thing leads to another and then another and then yet another? A flare of days turns to weeks turns to months……

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Photo by Ana Bregantin on Pexels.com

When I wrote my last blog post I had no idea and certainly no intention that it would take me so long before I would be back again.  So often we speak of pacing and the need to prioritise for our own self preservation, but even this can become physically and mentally exhausting.

Chronic pain combined with brain fog, combined with the disability of the dislocated right shoulder (yes of course I am right handed), multiplied by the hot weather doubling the effects of POTS and the number of faints, equals in some strange algebraic type equation a hell of a couple of months!!

 

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I am lucky to be an admin for a great group called the Chronic Illness Bloggers and I always prioritise the scheduling of their posts to Facebook as number one each week.  This means reading each blogger’s post to check that it adheres to the group rules ahead of scheduling and this is a past time that I look forward to – my guilty pleasure, for sure.  There are some seriously good writers out there and each week I come away having learnt something new, hungry to try another different recipe and generally inspired by our community. Brain fog and painful hand spasms have led to writer’s block on several different levels for my own writing……and on reading some of these wonderfully written and thought provoking blog posts, I have actually questioned my ability to write and felt a little intimidated.

The longer my flare and writing drought have endured the harder it has been to find my way back.  The inevitable thoughts of losing readers and poor stats start to creep in as the ever popular “how to write a successful blog” type posts crop up daily on my social media feeds.  Social media – aghhh! Has anyone else found themselves drowning in the inability to keep up with all the different platforms, when a head that has been stuffed with a mixture of cotton wool and candy floss will not allow you to remember how to even eat breakfast?  Scrolling down the ipad on Instagram is enough to set off hand pains, and keeping up with world politics on Twitter is enough to trigger a migraine!

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Photo by Kat Jayne on Pexels.com

 

Two days later and I am back to try to finish this post.  The last couple of days have been filled with fainting, trip to the doctor, more fainting, CIB scheduling, even more fainting and….oh no, the increase in symptoms caused by monthly hormonal fluctuations!!  Great.  But….I have read and scheduled more blog posts – found great tips on managing pain, journaling, the importance of a great support network to name but a few – and I thought about why I started blogging in the first place.  I knew nothing about stats and social media platforms – I wasn’t on Facebook or Twitter, and Instagram was just a word that the kids threw about.  Not once did I think about the numbers who might read my ramblings about chronic illness and family life. I wanted to share my experience of living with chronic pain and chronic illness – at the time having a spinal cord stimulator implanted to help with nerve pain – and maybe give something in the same way that I had received support and hope from other blogs.  Writing can be therapy, a distraction, an outlet, a hobby and a sanctuary.

So here sits this zebra attempting to write…hopeful and thankful and wanting to re-engage with this wonderful blog family.

 

A Zebra Returns

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PS: I am also the owner of some fab mauve fingerless compression gloves that help keep the spasms at bay when I type – hurray! IMG_0600

 

When The Simplest Things Floor Us

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain14 Comments

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.

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Photo by Fabiano Rodrigues on Pexels.com

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!

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This has taken several days to type…..hopefully normal service will be resumed soon!

 

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The ActivePosture Vest – My Trial and 5 Star Review

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Ehlers Danlos Syndrome, Review5 Comments

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.

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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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“I Need You to Need Me” by Pamela Jessen

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, relationships, Sex5 Comments

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

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

On By Claire Saul (PainPalsBlog)In chronic illness, chronic pain, Invisible illness, Pain relief22 Comments

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.

tears

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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Pain, Pain pin

 

Some Ramblings for January Prompts with A Chronic Voice

On By Claire Saul (PainPalsBlog)In About me, Blog share, chronic illness, chronic pain, Link Up13 Comments

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!!

 

blog

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.

 

stomach

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