Farewell My Chronic Companion

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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Farewell My Chronic companion 1

 

A Little Winter Magic and some Chronic Illness Reflections with Inspiring Blogs for You!

Hello PainPals!  I did start an Inspiring Blogs for you last week, but life seemed to get in the way.  This leaves a couple of weeks in the PainPals house to catch up on, yet the brain fog is leaving me struggling to remember what happened yesterday let alone last week – but I will try.

Winter Magic & Chronic Illness Reflections

 

When chronic illness (CI) slowly creeps up on you, often the “patient” and the “nearest and dearest” don’t notice how life has changed because we are all too busy living it.  A couple of weeks back I was very proud that I managed to successfully make a 50th birthday cake for a friend’s Silver and Gold party.  The cake took all week as I painstakingly cut out icing stars, painted them, baked the cake,  iced the cake – taught hubby how to ice the cake! – and decorated it.  I am so slow now as my hand frequently spasms (when painting on hundreds of gold “stars”) and the dislocated right arm is not conducive to handling a heavy icing rolling pin! But I did it.

 

Dancing queen

 

The next challenge was to get to the actual party.  Before CI, dressing up in silver and gold sparkles and spending my night on the dance floor being the dancing queen would have been a great night out.  With CI it can be a struggle to actually get out in the evening before fatigue sets in, but an extra strength is needed to overcome not just the physical limitations but the psychological ones too.  Before I could get through the door of the party venue in my electric wheelchair, I had to break through the barriers that my own brain was throwing up as I came to terms with no longer being an able bodied dancing queen.  The words drowning queen often spring to mind as the body won’t behave in the way that the head wants it to.  I still struggle, yet live this daily – and it soon became clear that it wasn’t just me having to come to terms with these changes.

 

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Photo by Engin Akyurt on Pexels.com

 

Several different friends asked if I had seen another lady – a mum from the primary school, where we all used to meet at the school gates when our now young adults were little. The interest here was that she was walking with a stick and “something” had happened to her – they wondered if I knew what?  I didn’t know, but immediately recognised that there would be people looking at me in the same light “last time we saw Claire she was up and mobile – for some it would have even been pre walking stick – what has happened that she is in now in a wheelchair?”  But for anyone who hasn’t witnessed that event or that general decline, so often they feel they can’t ask.

 

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Photo by Pixabay on Pexels.com

 

When this other lovely mum and I “bumped” into each other at the edge of the dance floor, I think that we immediately recognised kindred spirits and were also not afraid to ask “what happened?”.  She told me that she had suffered a stroke in her forties, I told her about my back surgeries and downward spiral with Ehlers Danlos Syndrome and chronic pain.  We discussed wheelchairs! When I later said to my friends that others (who hadn’t been with me over the last 10 years) would be wondering about me in the same way that my pals had mentioned the other lovely mum, at first they were taken aback and then realised this was true.  People who were not in the know were not “gossiping” about us, but rather were surprised to see such a huge change and I think this makes us think of our own frailties and indeed mortality. But I can assure you – a good time was had by all!

 

 

There has been a momentous event in the household – the young engineer has moved out! Hang out the bunting, change the locks……no, only kidding but I have to say that the household has used far less pasta and tuna in the weeks that he has been gone.  He has moved with a couple of friends into a swanky pad alongside the Queen Elizabeth park – home of the 2012 Olympics – in east London.  I did remind him that the new bedding would not only have to be put on the bed but also taken off the bed and put in the washing machine…..that gizmo sitting in the corner of the bright white new kitchen.  I wonder how long it will stay looking that way?!  This place is so smart that there is even a posh onsite gym for residents!  I am happy to report that he has not returned to the wrong address – at least not to this one, his better half may beg to differ!  Hubby and I have been sure to book our Christmas dinner at his place (we might be treated to tuna pasta).

 

 

The weather in the UK has been truly wet over the last fast weeks and with the changing of the clocks winter is arriving.  I have been reading some great wintery posts over the last few weeks so thought that I would share some before we enter December. So sit back with a cup/glass of something delicious and enjoy!

https://www.brainlesionandme.com/reasons-for-loving-winter/

https://chronicpainfighter.com/are-weighted-blankets-helpful-in-fibromyalgia/

https://chronicallyresilient.org/7-ways-to-beat-seasonal-affective-disorder-this-winter/

https://jademarie.co.uk/emetophobia-winter-coping-techniques/

https://crookedbearcreekorganicherbs.com/2019/11/25/the-herbs-and-spices-of-thanksgiving/

https://thecuriousfrugal.com/fall-soups/

http://www.paperseedlings.com/2019/11/wasted-snowflakes.html

https://www.momentsofpositivity.com/2019/11/believeing-in-yourself.html

https://mcwglenys.blogspot.com/2019/11/sex-isnt-everything.html

https://bysarahwhiley.wordpress.com/2019/11/26/peace/

Thank you for reading and please share/like/comment on the posts that you enjoy.

Have a great weekend,

Claire x

“In My Dreams…..”

When you wake are you still the same person that you were in your dreams? I’m never in a wheelchair or using a stick……and I think I’m forever 20!!!

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Forever 20!

In my dreams…..

I walk, I run, I dance

I laugh, I love, I cry

In My Dreams forever 20

 

In my dreams…..

I have a fit, healthy body

I feel forever young

My hair remains untinged by grey

My face unmarked by time and pain

 

Dream

 

In my dreams….

I am an independent working woman

A fully functioning wife and mum

I cook and clean (yes, really!)

I drive my car

I can even run

Dream 3

 

In my dreams…..

I stand up without fear of falling

I eat without a second thought

My memory works and my head is clear

I shower and wash my hair

 

Dream 2

 

In my dreams……

I am the woman I want to be

In a body that is whole

Unmarked by surgical wounds

Or the bend and flex of illness.

In my dreams.

 

In My Dreams

 

Midweek Magic – Inspiring Blogs for You!

Regular readers will have realised that Monday isn’t working out too well for the regular blog share post.  Maybe yours truly isn’t organised enough (yes, Mum, I know!), maybe I prioritise my admin role for scheduling within a Facebook group (Chronic Illness Bloggers, I love you all), maybe the day to day fluctuations of my own chronic illness just take over.

Monday Magic Inspiring Blogs for You!

One of the most frustrating aspects of chronic illness – chronic pain, Ehlers Danlos Syndrome, POTS etc etc – for me is being robbed of the ability to make plans.  Don’t get me wrong, I do still make plans but I hate having to cancel and at times it does feel easier just not to make those plans in the first case.  It would be so easy to slide into an oblivion of constant sofa days without ever having to worry about keeping an appointment.  But this is too often the reality for the chronically ill with regular flare days and once very active people find themselves unable to keep up with life – certainly true for me.  So I must still try to make arrangements and to get out and about when I can.  I won’t be running any marathons soon, but this week I have managed a couple of trips to the park (between rain days) and a cinema visit to watch a recording of Matthew Bourne’s ballet Romeo and Juliet from Sadlers Wells. Different, controversial, inspiring, beautiful, dark, amazing…..just some of the words to describe it.

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                                   “SOFA DAYS”                                          Photo by bruce mars on Pexels.com

 

The beginning of half term was dominated by A level English Literature course work, as the lovely girl battled to complete her comparison of two self chosen novels.  With hindsight – that wonderful thing! – I think that maybe she bit off rather too much in choosing A Little Life (Hanya Yanagihara) and The Goldfinch (Donna Tartt), both weighty tomes.  The first deadline came and went, as did the second.  Meanwhile a Whatsapp group gaggle was regularly checking in as they all struggled to complete their pieces on their respective books.  By the following morning the lovely girl’s piece was complete but needed to be cut by 1500 words!!!  Hubby and I were called in to help with proof reading/editing, which was hard enough for me as I have only read one of the books, but hubby has read neither!  We were both sent packing pdq, but we do feel that we know the books inside out now (I have read A Little Life and thoroughly recommend it – warning not a happy read!!).  Finally, 24 hours after the original school deadline, her piece was submitted…..now it is on to the Extended Project and the art coursework. I may not be physically doing the work, but I feel like I am (ha, ha, ha).

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I think that I have found some great new blogs for you this week and hopefully will brighten your day as we step well and truly into Autumn – the rain in my part of the UK has been horrendous.  Grab yourself a cuppa, sit back and enjoy!

 

https://debs-world.com/2019/10/19/want-to-know-what-you-said-here-are-your-responses-to-the-question-how-do-you-blog/

http://chronicallyhopeful.com/exploring-the-garden-and-our-first-family-bbq-in-years/

http://calminsights.com/come-lets-sit-and-heal-each-other/

https://teaandcakeforthesoul.wordpress.com/2017/10/20/apple-coconut-squares/

https://beingandniceness.com/2019/10/21/subjectivity-narcissism-and-self-psychology-freud-and-beyond-part-5/

https://novelisteer.wordpress.com/2019/10/18/i-wish-you-all-the-best-by-mason-deaver/

https://moriganna.com/work/starting-to-stress-out-practical-tips-to-prevent-spiralling/

https://lifewithspinabifida.com/2019/10/21/the-job-search-has-ended-why-am-i-relieved/

https://thereluctantspoonie.com/2019/10/21/3-pots-advocates-to-make-friends-with-today-dysautonomia-awareness-month-2019/

https://crookedbearcreekorganicherbs.com/2019/10/21/october-herb-of-the-month-safflower/

https://www.thecurvaceousvegan.com/2019/09/19/am-i-ever-going-to-be-enough-in-the-blogging-world/

Please comment, like and share – make a blogger’s day!

Have a great week!

Claire x

Midweek Magic 24th Oct

 

Feeling Isolated in a Storm #chronicillness

I’m without internet.  I’m without live TV.  There has been a storm here in the UK this morning – and I’m not referring to the events of the Supreme Court – and it has left this bendy body reeling.

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Feeling Isolated in a Storm

 

The baggy blood vessels and dodgy nerve signals that accompany dysautonomia have been complaining over the last couple of days, but the storm of thunder and lightning outside the window is now being mimicked by the different syndromes inhabiting this body of mine.

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In other words, yours truly is unable to sit upright, much less stand without a gross centre of gravity failure.  I should mention here that the dislocated shoulder tends to put me off balance too, but imagine the feeling getting off a fairground ride, add in black blobs in front of your eyes and you get the picture.

 

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Photo by sergio souza on Pexels.com

 

So, what is a girl to do? Attend a rheumatology appointment? No better cancel that as hubby can’t get me out of the house! Watch the news unfolding outside the High court and keep track of events on Twitter; tune in to favourite Netflix programmes whilst reading and scheduling posts for the Chronic Illness Bloggers; catch up with favourite bloggers and watch daytime TV? NO……

 

It is at times like this that I realise how much I value my online support and friendships from fellow bloggers to tweeters to Facebook groups and other chronic pals.  I appreciate how much more isolating chronic illness and disability must have been prior to the emergence of the IT world. The storm outside the window is over(ish) and the sun has been streaming in, but the damage it has done is ongoing to my technical equipment……but maybe the effect on the body can mimic the sunshine.  Here’s hoping! Now where did I leave my Kindle?

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(Written on Monday – I will publish just as soon as I can get back online!!!)

 

Some Chronic Pain Thoughts – A Chronic Voice Link Up

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.

Finding

 

 

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.

Researching

 

 

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!

Reusing

 

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……

Dating 1

 

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

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……

adult alone despair emotion
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!!

 

A Zebra Returns 1

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

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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When the simplest things

 

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!

Hand

 

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

 

When the simplest things 2

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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Posture Vest pin 2

 

 

 

“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