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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Some Ramblings for January Prompts with A Chronic Voice

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

january prompts

Dedicating

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

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

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

 

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Establishing

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

 

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Breaking

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

 

barrier

 

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

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

Strengthening

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

 

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Allowing

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

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

 

to be

 

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

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

Claire x

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!!!

Cake suggestion
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