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.

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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

 

 

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……

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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New Beginnings from the Storm – A Chronic Voice Link Up

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

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New Beginnings from the Storm

The storm within my body brews

Changing the outlook daily

Swirling, drifting, creeping

One step forward, three steps back

Adjusting to the physical.

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What of my mind though?

How does the mental deal with the physical?

The physical is tiring

But the mental is exhausting,

Crushing the buds of hoping underfoot.

Some hope slumbers beneath the pain storm

As the first weak spring rays break out

Warming both my body and mind

Helping those surviving buds

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

Become something positive and hopeful

Harnessing my body and mind,

The physical and mental,

Into befriending both myself

And others living just like me.

Our virtual world of chronic storms

Brings the warmth and sunshine

Of support and care,

The awakening of new beginnings

New friendships, new hope.

 

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New Beginnings pin

June Link Up Party with A Chronic Voice

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I have been saying for months now that I would get my act together and join in with Sheryl’s Link Up Party over on A Chronic Voice…..so this is finally me getting my act together, just in time to sneak into June!  Sheryl provides prompts so that we bloggers can learn just a little bit about each other – and ourselves!

Prompts for the Month

  1. Reminding
  2. Pacing
  3. Surrendering
  4. Improving
  5. Flowing

 

Reminding

Over the last couple of weeks my kids lives have been galloping at  a great speed, reminding me that I really am that middle aged woman who stares out from the mirror!  The household exams came to a finish this week as our girl took her final GCSE – as a parent I have been through them 3 times and that is it, no more!  Then my baby went off with her bag containing a party dress, shoes and makeup to get ready with friends for their end of year party – I doubt that she will let me post a picture, so you will have to take my word for it that the girls looked beautiful.  Reminding me how long ago I was 16!

Lucy & Sharelle
I have been allowed to post – my lovely girl and her beautiful friend!

Son number 2 came home from his first year at university sporting a slightly shaggy, slightly ginger beard and looking skinnier and taller.  Last night the hall was suddenly full of very large shoes as a group of 19 year old males gathered for drinks and football before heading off to a party. “Don’t wait up!” reminding me yet again that my youthful days of partying are long behind me.

The final straw came in the form of a large white envelope addressed to son number 1 bearing the stamp of Companies House.  “This is really happening” said my girl at the realisation that her annoying big brother has finished university and is entering the big wide world with a tech Start-Up! Reminding me that I really do have adult kids!

Pacing

If yours truly had remembered all that I read on a regular basis and tell myself about pacing, perhaps today (Saturday) wouldn’t have been a “crash & burn” day.  It has been a major crash at that, meaning PJs and sofa all day.  But it is not every week that hubby goes away on a school trip to France and my birthday falls slap bang in the middle of said week.  Now of course hubby going away means that my new carers for the week are the kids, so pacing in the house goes out of the window immediately.  But add into the equation several lovely groups of friends wanting to take me out to celebrate and the kids actually arranging a meal out too, then there is the recipe for an epic failure at pacing.  It has been great though!

Surrendering

Recently I have recognised that “surrendering” to my diagnoses and accepting my limitations need not be a negative.  Too often we think of ill health in terms of “cure”, and with ever changing medical advances there can be an unrealistic expectation of the medical profession to be able to put everything right.  But the reality of many chronic conditions is that there is not a cure and the best that can be done is to manage symptoms and keep as healthy as possible.  I know that some people didn’t understand why I started to use a wheelchair when I can still walk, and they will view my surrendering as something very different.

Surrendering & liberating
June Link Up with A Chronic Voice

But for me surrendering to my conditions and accepting them has been liberating.  No, I’m not “giving in” and am definitely not negative, but rather acknowledging that to live my life in the best way possible way sometimes I need a bit of extra help.  If using a wheelchair means that I can still go round the shops, or on a family walk then so be it!  If I need to rest and binge watch on Netflix, I won’t feel guilty (that is a work in progress!).

Improving

Much to the disgust of my kids, I think that my computer and social media skills are really improving.  If you listened to them you would be forgiven for thinking that I am the mother who constantly posts pictures of my little darlings every move.  Get over your selves, kids – I have other things in life to tweet, post to Facebook and Instagram!!  I have finally swapped to a .com blog account with wordpress, I am now able to link up all the relevant SM sites on my book reviews, I have set up several Facebook pages and I am an admin to a group.  Of course when I asked the then student engineer to set me up a blog when I had my spinal cord stimulator, it was just laughable in the kids’ minds that anyone would want to read anything their dopey mum had to say.  But my followers have grown slowly and steadily from all walks of life, and this old girl is pleased to report ongoing, improving IT skills!

Flowing

I’m going in a completely different direction with this prompt and want to share some fun that we had a few weeks ago.  For the past couple of years I have made the birthday cakes for the daughters of a friend, varying from My Little Pony to Cat Woman to a magic unicorn tiered cake.  This year the brief was sent by the soon to be 8 year old in the form a photograph with attaching note – NO fondant or buttercream icing!  “OK, leave it with me” I said to mum, wondering on earth I would achieve anything vaguely resembling the finish on the picture.  Then I learnt about “Mirror glaze” cakes!!!

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The picture I was sent!

So, with cake made and Youtube videos watched and admired, the lovely girl, hubby and I set to work creating.  The covering is made using a combination of gelatine, white chocolate, condensed milk and a few other goodies.  Then the colourings are added before pouring the icing over the cake until it is flowing down the sides and completely covers the cake.  Depending upon when the colouring is added and how many are added to one layer will alter the final cake covering.  It was great fun, the kitchen saw more flowing condensed milk than it has ever seen but for a first time I was pretty happy with our Mirror glaze galaxy cake!

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Our cake!

 

Hope you have enjoyed my prompts!

Claire x

 

 

Meet and Greet: 9/2/17

Meet n Greet courtesy of Danny on Dream Big blog!

Dream Big, Dream Often

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It’s Meet and Greet time everyone!!  Strap on your party shoes and join the fun!  

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!
  3. Edit your reblog post and add tags.
  4. Feel free to leave your link multiple times!  It is okay to update your link for more exposure every day if you want.  It is up to you!

  5. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new blogs to follow.

See ya on Monday!!

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