The Trouble with Chronic Illness…..

It has been months since I have written and the world has changed beyond all recognition. The global pandemic has changed the course of life for all of us and in recent weeks another spotlight has been shone on events that have resulted in global demonstrations to highlight that #BlackLivesMatter.  There have been an enormous number of beautifully written posts that I have read about both subjects from fellow bloggers and I salute you all.

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The Trouble with Chronic Illness

 

Initially my Ehlers Danlos bendy body parts were responsible for my lack of writing, as the recurrent right shoulder dislocation became a near permanent dislocation and this in turn increased the problems in my neck vertebra and referred pain down my left arm.  I have had the most fantastic excuse to avoid cleaning and cooking…….but it has been wearing both physically and mentally.  The longer it has been since I have put pen to paper, the harder it has been to come back – actually reading some of the fantastic writing out there has also made it harder to come back. I mean why should anyone be interested in my chronic ramblings? But here I am with a catch up, joining with Sheryl’s June link up on A Chronic Voice and a post that has been floating in my cloudy brain for several months.

A Chronic Voice June prompts

 

The prompts for the June link up are: Searching, traumatising, responding, hoping, honouring

It feels like the whole world is searching for answers right now, particularly of the COVID-19 variety, but this is a situation that those with chronic illnesses find themselves in regularly.  The trouble with chronic illness is that many of us will have several conditions alongside our primary diagnosis known as co-morbidities and this usually involves being under the care of several different medical teams.  At the beginning of March my own searching for answers led me to 3 different hospitals within 10 days as I underwent a scan on my neck, a nerve conduction study, an x-ray and an orthopaedic consultation.  My wonderful shoulder consultant has agreed that hubby can’t go on doing the cooking, oops….I mean that I can’t go on with the pain and neck spasms, so he has referred me for fusion surgery to a specialist London orthopaedic hospital.  Not great timing and no expectations of being seen any time soon.

Shoulder 1

Suddenly the country, indeed the world, was on high alert.  We had one son and his partner on holiday in San Francisco and the other still at university 150 miles away, whilst closer to home our bathroom had been ripped out in order for yours truly to have an adapted wet room.  Every day new advice – wash your hands (took me back to nurse training), keep 2m apart, no unnecessary journeys, no theatre or restaurant outings – and the news kept coming in from across the world of rising numbers and death rates.  A sunny weekend in the UK saw beauty spots flooded with visitors and the voices of NHS staff expressing their anxiety, concern and disbelief at the sheer numbers admitted with suspected corona virus.  Our eldest managed to board one of the final flights home to Heathrow, lockdown was announced and our builder had to stop work. The bathroom was a shell!

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A day later the first cough started in PainPals house – yours truly. Flu like symptoms hit hard and we went into isolation, expecting it to last for 2 weeks.  After a week hubby developed symptoms whilst I seemed to rally, but it was not to last.  The cough worsened accompanied by chest pain and a temperature that was up and down like a yoyo, and my NHS letter arrived telling me that I was vulnerable.  A couple of weeks after the first cough, hubby and the lovely girl (17 years old and completely asymptomatic) called an ambulance after watching my breathing deteriorate as the horrendous cough and chest pain increased.  When someone is struggling to breathe – each inhalation feeling like drawing in syrup through a straw and causing a hacking dry, cough – it is probably as traumatising for the family to witness as for the patient.  I remember their anxious faces and the reality dawning that this was pretty serious. The paramedics spent over an hour rechecking basic observations and heart traces until they were happy that my oxygen saturation had crept back up and I could stay at home “you are better off here with your medical history”.  My active symptoms persisted for another 4 weeks keeping us in isolation, and during my first short trip out in my electric wheelchair I was set back again as the fresh air hit my lungs causing the hacking cough and chest pain to start up.  I am one of the lucky ones and avoided hospital, but recovery has been slow – this virus is truly traumatising.

Covid 19

Responding to this pandemic has led to descriptions of a new “normal” and a whole new vocabulary – furlough (who knew?!), social distancing, social isolating, shielding, social bubbles to name a few. Life has changed as populations have been told to stay at home, schools and businesses have shut and many have found themselves alone and afraid.  Job security and finances are uncertain, plans for the future impossible to call.  But many of my fellow chronic illness pals will no doubt have drawn the comparisons with the new “normal” and our everyday chronic normal. The social isolation that a failing body inflicts, feeling cut off from friends and family, financial insecurity due to inability to work and the ever present stress and anxiety that accompanies a chronic illness.

In the weeks before the UK went into lock down, I was filling out various forms for my application for an assistance dog and unsurprisingly one needed to be from a doctor.  Ideally this doctor should be someone who knows the applicant well and has a relationship with them.  In normal circumstances for me this would be my GP, a lovely lady who sees me monthly and is closely involved with all aspects of my care. But even  prior to the pandemic she was on long term sick leave and I found myself having to consider who to turn to.  This takes me back to the beginning of this post – the trouble with chronic illness and the related co-morbidities is that there is rarely one consultant, one doctor who oversees all our care. One of the moans that comes up time and time again at my EDS support groups is that there is never one doctor who can oversee all a patient’s needs – in our case for Ehlers Danlos Syndrome.

Doctors 2

 

Which of your medics knows you best? Who is best placed to answer questions about you, from your medical background to your home circumstances? How often do you see the same doctor at each hospital visit? Would any of those different medics truly be honouring you, the patient, properly by filling out a report without really knowing you?  These questions went round and round in my head during the second week of March as the UK looked set to close down and I really questioned which of my medical teams actually know me.  From gastroenterologist, urologist, cardiologist, rheumatologist to pain team, I eventually decided that my orthopaedic consultant has probably spent the most time with me over several years and he knows my previous physio very well.  He is also approachable and I felt confident that he would be prepared to “vouch” for me – sadly not something that can always be said.  I was right and he was more than happy to help, and I was very fortunate to have another GP from my practice spend the time on a telephone appointment to go through the application form with me.  Hospital appointments tend to figure highly in any spoonie’s social calendar and even these are entering into a new “normal” – I had my first virtual video appointment with a spinal consultant a couple of weeks ago.  An interesting and surprisingly easy experience – no tiring journey, no difficulty parking, no waiting as appointment times overrun.  The lovely girl also had a virtual appointment for an ear infection, but hubby wasn’t so lucky with his tooth ache on an old root canal filling.  When the dentist was still closed I offered to pull it out for him but he didn’t take me up on it! Time will tell how well this new appointment system works.

Light at end of tunnel

As the UK and other areas across the world begin to emerge from lockdown, I think that many of us are hoping that a light can be seen at the end of the tunnel.  The tunnel remains long and winding, but hope is what we must cling to. Whilst most people are hoping to return to a new “normal” life soon, those of us with chronic illness and classed as vulnerable have a much slower journey ahead of us. I am hoping that we don’t get left too far behind or forgotten.  Keeping my future assistance dog in mind, I am also hoping that the staff for this small charity will soon be back from furlough, they can continue fund raising and the placing of these wonderful dogs can begin again soon!

Finally it would feel remiss if I did not use the word honouring for the memory of all those who have lost their lives during this pandemic and their loved ones, and for all the front line workers who have worked relentlessly throughout.

Honouring

 

There it is – my first blog post in months. I am back! And in case you were wondering…..I have a bathroom.

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The Trouble with Chronic Illness 2

 

 

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.

 

underwater photography of woman
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!!!

Claire 2
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

 

Falls and Bruises, Mixed with Magic – Inspiring Blogs for You!

It feels like forever since I last posted Monday Magic…..in fact writing still remains a bit of a challenge with the dislocations and whatnot getting the better of me.

Monday Magic Inspiring Blogs for You! w:c 14th Oct

I did learn a valuable lesson last week.  Hubby was out coaching year 6 football (10-11 year olds!) so I was home alone with our 17 year old dog.  IMG_0654Before the front door slams I always hear the same phrase leave hubby’s lips “Don’t do anything stupid!” – I mean as if!!!  I had helped the dog up – he can no longer stand unaided which prove problematic for yours truly – and then headed for his pottery water bowl.  “That looks a bit manky, Sam, I’ll get you some fresh water” :just as I was crossing the kitchen, heavy bowl in hand and stretching the ligaments to the limit – one hip decided to go disco dancing all by itself. Pop!  Out of socket it leapt and left its owner leaping across the floor, skidding in the dog’s manky water and the owner nose diving toward the hard tiles of the kitchen floor.

 

You know that feeling when something happens in slow motion, yet there is nothing you can do to prevent the outcome?  After face planting the ground I slowly attempted to move, gently checking for injuries.  Who am I kidding, everything hurt like crazy, most joints had popped out by this point and I couldn’t have told you if anything had broken or not.  Could I stand up? um…..Could I sit up?…..maybe, if I could manoeuvre myself without using arms or legs.  No that really wasn’t going to work, particularly as there was water all around me.  After heaving myself up the kitchen cupboards into a quasi seated position, I managed to use my mobile phone which happened to be tucked in my pocket and ring my parents, who live up the road.  Hurray – they were home and came straight down, but I was still soaked through to my underwear by the time they arrived and of course Dad laughed. I can see the funny side – the dog had scarpered and was waiting in the hall for them, whilst I was spread eagled across the kitchen floor surrounded by water and smashed crockery. What a sight to see!

Slump

 

Anyway my lesson was that when the family “fuss” and tell this old know-it-all that I must behave and always carry a phone when home alone……they are right.  In fact I think a key box may be a good idea – not for when the lovely girl or the young engineer forget their keys – but in the event that I have to “phone a friend” for help in the future.

The bruises have been monumental down my legs, side and arms – the whole Ehlers Danlos easy bruising skin has been in full view, but they are now fading.  Our dog is the proud owner of a brand new PLASTIC blue water bowl.  Hubby has managed to get me to the theatre and on a university art school open day with the lovely girl – with lots of velcro fastenings and tapes to keep everything in place.  But as you can imagine the call before the front door slams has now become “I mean it this time, Claire – don’t do anything stupid!!”

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I have read numerous blog posts over the last few weeks whilst nursing my sore body and have picked a few favourites that I think are inspiring.  So sit back with a cuppa and enjoy!

https://rachelintheoc.com/2019/09/how-boundaries-can-help-us-avoid-burdens-by-guest-judith-staff-jcstaff_/

https://weareholistic.wordpress.com/2019/10/07/2811/

https://despitepain.com/2019/10/10/are-online-support-groups-helpful-for-people-with-pain/

https://morethanaspoonie.blog/2019/10/10/the-depression-greyzone/

https://ritubhathal.com/2019/10/08/when-youre-still-waiting-what-to-do/

https://ourfavouritejar.home.blog/2019/10/08/10-things-to-know-about-hospice-care/

https://keirancrying.com/2019/10/07/home-is-wherever-i-live-my-tips-for-moving-house/

https://the-tea-chest.blog/2019/10/13/%e2%99%a5-charity-tea-%e2%99%a5/

https://kateonthinice.com/planning-for-happiness-with-a-good-plan/

https://www.morganprince.com/2019/10/self-care-activities-10-minutes.html

Please comment, like and share these posts!

Have a great week,

Claire x

P.S. I am ok and live to fight another day!!

Monday Magic Inspiring Blogs for You! 14th 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.

Recounting 1

 

 

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……

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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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Midweek Magic – and some Inspiring Blogs for You!

It has been a momentous week for several reasons.  Hubby and I were planning a trip to visit his parents and true to form I was so unwell at the beginning of last week that it was looking like we would have to cancel….yet again.  I am ashamed to say that it has been over 3 years since I last managed the 4 hour journey, in fact it was when I stayed with them after my spinal cord stimulator surgery.  Please believe me when I say that it is not that I don’t love my in laws but rather that every time we have planned a visit my body has disagreed.  There have been shoulder dislocations, POTS flares and neck problems – not forgetting that my chronic back pain prevents me from sitting still for long periods.

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Midweek Magic Inspiring Blogs for You! 22 Aug

Something that goes hand in hand with a chronic illness is unpredictability and then the inability to make plans – and the guilt at having to break plans.  So when Tuesday morning dawned and I couldn’t sit upright, I felt that I had let everyone down yet again.  Wednesday arrived and we decided to give it a go.  The electric wheelchair was hoisted into the car, I was settled in surrounded by cushions, an Audible series was downloaded and we were away.  It wasn’t an easy journey, but I made it even if I did have to swap one sofa for another!

IMG_2418I had a different furry friend to keep me company following a faint – Lexi the pug – and I enjoyed the freedom that my electric wheels gave me during a trip into Hereford city centre.  My driving skills are improving!  IMG_0605With the weather breaking in the UK my symptoms are more manageable now and the fainting is under control – would you believe though that the wet, clammy, stormy weather causes as many problems with this body barometer of mine as the really hot days?!

 

 

 

 

 

This week the lovely girl started work experience with big brother, the young engineer.  How I wish I could have been a fly on the wall!!  He wants her to help with design elements of…….um, I wish I knew or understood!

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It seems to have gone well, but she laughed in the change in her big brother as soon as they got home reverting from boss to twit!  The whole family has enjoyed playing with my latest toy that arrived this week – a recliner chair which has already saved me during a POTSie episode today as it will lay me almost flat.  The young engineer was so excited by the integral USB port that he almost face planted on the floor when lifting himself to standing too far!! I will give you a chair review when I have had it for a couple of weeks.

So back to business and sharing some great blog posts with you.  I have found a couple of posts about writing – for lovely Ritu the publication of her novel is in sight (if it is as good as her cakes it will be fab) – tips to boost your family’s health, and some lovely posts from chronic illness pals.  So sit back with a cuppa and enjoy!

https://www.therollingtwenties.com/2019/08/love-to-write-part-3.html

https://ritubhathal.com/2019/08/20/when-it-all-gets-a-bit-too-much/

https://livelovetexas.com/homemade-apple-cinnamon-sugar-scrub-recipe/

https://hughsviewsandnews.com/2019/08/12/blogging-with-a-little-help-from-your-friends-a-guest-post-by-sherri-matthews-writersherri/

https://www.realisticoptimism.org/post/can-exhaustion-work-for-you

https://www.angiecruise.com/how-to-boost-your-immune-system-naturally-before-school-starts/

https://crazychroniclife.wordpress.com/2019/06/25/a-pep-talk-to-myself-and-anyone-else-that-needs-it/

https://bucketsoftea.co.uk/happiness/five-things-to-put-a-real-smile-on-your-face/

https://chronicrants.com/2019/08/21/would-it-be-different-if-i-werent-a-woman/

https://positivelyrachel.com/2019/08/14/mindful-impact/

Please make someone’s day with a like, a comment or a share if you enjoy their post!

Have a great week,

Claire x

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Midweek Magic Inspiring Blogs for You! 1 22Aug

 

 

 

 

Monday Magic is back – Inspiring Blogs for You!

It feels like forever since I shared some inspiring blog posts with you.  If you read my last post you will know that for various reasons writing has not come easily recently, but I something that I really want to do is to get back into the habit of sharing great blog posts with you.

Monday Magic is back

Back in June I did manage to get to the Annual Bloggers Bash Awards in London and once again was able to meet up with other bloggers – some were old friends, others I felt I knew and then there were others who, along with their blogs, were new to me.  I was so excited that a fellow Chronic Illness Blogger – and one who I know – the lovely Caz from Invisibly Me won a category……you must have all heard my cheers!

 

The hotel was beautiful, situated in a perfect London square which actually boasted a small cricket pitch.  I’m not sure that they liked the look of me though as we had to use the tradesman’s entrance round the back…….this was the accessible entrance with a stairlift that accommodated my wheelchair.  The design seemed so clever until it was time to go home and the young receptionist blew the electrics when he turned the stairlift on.  There was no way that it was going to budge, so yours truly had to get out and sedately make my way down the stairs whilst hubby carried the chair behind me!  It was nobody’s fault, but it was a good job that I wasn’t in my electric chair…..nobody would have been shifting the weight of that down the stairs!!

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Photo by Ekaterina on Pexels.com

Meanwhile the younger male members of the family have been off gallivanting to sunny climes.  The politics student went away with uni friends to Spain where they stayed in a friend’s villa on the coast near Alicante. Maybe that should read a friend’s parents’ villa….. I am certain that they are lovely, but they must be totally and utterly mad to allow a group of 10 twenty year old “boys” to use their holiday home!  More recently the young engineer and friends left London at its hottest for the cooler temperatures of stunning Crete followed quickly by a trip to Pride in Amsterdam – if the photos are anything to go by they had a wonderful time in both locations.  I will save stories of our hols in dear old Blighty for another day!

 

What of the lovely girl? Well she and her friends have had their A level artwork “Inside-Outside-Inbetween” exhibited by the Royal Marsden hospital in Sutton (Surrey branch).  The hospital reached out to local schools as they wished to display local young artists’ work in both corridors and treatment rooms. A private viewing was laid on for the students alongside friends and family – unfortunately I was too unwell to be there but hubby and parents had a great evening.  Apparently the food that the Marsden laid on was great – and the art was pretty good too!!  Anyone who is local and interested will be able to view the girls’ art until December.

 

 

 

 

So that must mean that it is time to sit back and enjoy some great blog posts – this week all chronic illness and health related – as ever please like, comment and share posts that you enjoy.

https://www.simplyemma.co.uk/slowing-down-to-smell-the-flowers/

http://rockabillyspoonie.com/2019/08/12/for-the-records/

https://thechronictraveller.com/2019/08/11/the-milan-bone-church-san-bernardino-alle-ossa/

https://pamelajessen.com/2019/08/09/cannabis-for-fibromyalgia-and-invisible-illness/

https://weareholistic.wordpress.com/2018/04/14/self-care-is-simple/

https://youcanalwaysstartnow.wordpress.com/2019/04/29/mighty-ugly-not-me-the-book/

https://3sistersabroad.com/2019/08/03/a-day-in-salamanca-spain/

https://livingwithme.blog/2019/07/07/life-update-and-goals-for-2019/

http://www.shipwithnosails.com/2019/04/20/facing-the-fire-what-to-do-when-you-are-first-diagnosed-with-crps-rsd/

https://www.jumbledbrain.com/2019/08/12/are-these-brain-zaps-just-anxiety-or-my-brain-injury/

Have a great week,

Claire x

Monday Magic 12 Aug