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

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

adult alone despair emotion
Photo by Ana Bregantin on Pexels.com

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

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

 

A Zebra Returns 1

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

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

adult alone anxious black and white
Photo by Kat Jayne on Pexels.com

 

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

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

 

A Zebra Returns

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

 

When The Simplest Things Floor Us

Isn’t it funny how sometimes the simplest of things can floor us?  Not the big things – the dislocations, the brain fog or even a recent A&E visit to check out an ankle injury for fractures.  Over the last few weeks a new enemy has been creeping up, slowly and insidiously until a sudden movement caused spasm and pain off the Richter scale.

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Photo by Fabiano Rodrigues on Pexels.com

Where? Back pain? Neck pain?  Well they still haunt me daily alongside the dislocations, but this is different and affects everything I try to do.  One evening several weeks back, my right hand suddenly drew itself up with a sudden, intense spasm into a claw.  There was no warning and the pain was searing – in fact I screamed the roof off leaving no one in any doubt that something had happened.  Cramp? No, this was a very different feeling as the ligaments and bones within my hand felt as if they had become intertwined and stuck in a confusing rigid medley of pain and spasm.

 

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When the simplest things

 

Several hours later the claw unwound as quickly as it developed, but the pain, now in both hands continues.  Maybe it is a repetitive strain type pain or some of the nerve pain may originate in the problems in my neck, I don’t know, but it affects everything.  Holding a cup of tea, brushing my hair, holding a book……and typing!  Admin duties for the Chronic Illness Bloggers and emails have been prioritised but typing is painfully slow.  Writing my own blogs has slowly but surely slipped away from me.

Nothing in life is predictable is it? But life with chronic illness has “unpredictability” as a middle name – no day is ever the same, it is impossible to know how the body or mind will present itself as it wakes each day.  The bigger issues, “the big picture”, can be easier to cope with, but the little things that are unexpected can be the straw to break the camel’s back.  The best laid plans can be blown apart, resentment hits, brain fog distorts memory and pain can take hold.  Yet life goes on with or without functioning hands!

Hand

 

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

 

When the simplest things 2

The ActivePosture Vest – My Trial and 5 Star Review

Disclosure

For some time now I have been looking for a garment that would give my ever dislocating shoulders some support and yet that I would also be able to actually put on without dislocating said shoulders!  More of this below.  The Active Posture products were recommended to me and the company gave me a posture vest to trial in exchange for a fair and honest review.

ActivePosture

 

Background from the ActivePosture website

Posture clothing: all you need to know
It can be difficult to keep an upright posture throughout the day, which is where posture clothing from ActivePosture® can help. Posture clothing activates muscle memory to help you achieve an improved, upright posture.

Posture clothing can be a comfortable and practical solution for problems induced by poor posture, or it can act as a supplement to training, exercise and physical therapy. Your posture has an influence on your physical health and overall well-being, so having aligned posture benefits us during work, training and in everyday life.

How does posture clothing work?
At ActivePosture.co.uk you can purchase clinically tested and medically approved posture clothing from leading manufacturer, AlignMed®. Our products are inspired by the concept of Kinesio-taping, which stimulates muscles, improves blood circulation and can aid in maintaining an aligned posture. Our posture clothing can be worn in everyday situations, whether it is during physical activities or when you are stationary.

Who is posture clothing suitable for?
Pretty much everyone can improve their posture from wearing posture clothing. It is also particularly beneficial to supplement physiotherapy and training, however, if you have a recent injury, we recommend consulting a physiotherapist or doctor before use.

 

 

The Product

ActivePosture offer products for both men and women in several different styles and colours.  There is a classic v necked vest top, in petrol blue, white or black for gents or blue, nude, white, black or burgundy for ladies.  A zipper fronted vest is available in both black and white for gents and ladies.  There is also an AlignMe Interactive bra available in 4 colours.

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The website gives clear instructions to measure for your posture vest and suggests that if between sizes you should opt for the smaller as the top must be snug.  At 5 feet 8 inches and taking a 34 A/B bra, I wear a UK size 12 and ordered a Medium which fits well.  I can’t comment for fit for ladies with a larger bust size, but please be aware that the vest is not fitted with cups.

My vest arrived quickly and was beautifully packaged, creating an excellent first impression for the product inside.  The vest itself is made from a mixture of nylon, spandex and polyester and beautifully constructed with Neuroband support straps throughout the lower neck, shoulder and back area.  These bands are all made from different levels of elasticity and exert different pressures on the body.  I had requested a zipper version for ease when putting the vest on and taking it off – this is because I have recurrent dislocations, arthritis and chronic pain particularly in my right shoulder.

 

My Trial Period

I have had my vest since the beginning of February and was advised by the company to gradually build up the wearing time.  The recommendation is to start wearing for an hour per day, but as I have a specific condition that means my connective tissue and joints work differently to the norm, it was suggested that I use it for 30 minutes per day.

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The vest does feel tight initially and the shoulders need to be fitting correctly – if the vest is the correct size it is possible to feel a gentle pull across the shoulder blades and muscles, and this increases if the wearer begins to round their shoulders.  There is also support around the lower back lumbar region too.

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After building up wearing time over a 2 week period, I then opened a drawer and suffered a severe (even by my standards) dislocation which left my arm hanging low, immobile and in a great deal of pain.  It took approx 2 weeks before the humerus would even pretend to stay in the socket…….and most days it continues to slip out as I cough, sneeze or just move!  During this initial fortnight my pain was too severe to wear anything snug, but I had a long planned theatre trip and made the decision to wear the vest in order to try to support my shoulder – my main reason for wishing to trial the product.

My thoughts

I found the ActivePosture product to be of a high quality and very comfortable to wear.  I have washed it several times, following the manufacturer’s instructions and it has maintained the shape and washed very well.

Please remember that my anatomy is slightly different and I am looking at the product for a different support – but I believe that for pure posture support and to run alongside physio programmes, this product works very well.  I have worn the vest whilst sitting both at a table whilst typing and also relaxing in an easy chair and was definitely able to feel the posture support that it encourages.

I am not unrealistic and did not expect the vest to hold my shoulder in socket or to prevent my dislocations.  If only it were so simple!  My physio has always said that when dealing with my shoulders he must forget all that he has been taught, and instead work with me in the opposite way to how he would treat everyone else!!   But I had been hoping that the vest would offer my joints and lower neck some support and I am delighted to report that it does.  I have not worn the vest whilst my shoulder is completely out of joint – to be honest it is difficult to wear any top – but I have been wearing it when the shoulder/s are in the normal (for me) state of constant subluxing.  My preference is without a bra underneath.  I have found that the top acts rather like a compression garment and offers my stretched muscles and ligaments gentle support, whilst I hope also encouraging the muscles to do a little work themselves. (Please note that I do regular exercises when I am able to prevent too much deconditioning).

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Not quite the models from the website, but you need to see the vest on yours truly!

I have also noticed support across the lower neck where I have several vertebra that have a tendency to “pop” in and out.  This leaves me at times with a “dowager’s hump” and I genuinely believe that the Neuroband support mechanisms in this vest have helped with better positioning and pain control.  Many of you will also be aware that I have had major surgeries on my lumbar spine over the years, and a very pleasant surprise has been that this vest also gives me support and compression around this region – gentle compression (actually sometimes full on pressure!) really helps manage my nerve damage and pain.

So what of that theatre trip?  Whilst still in an immense amount of pain and needing morphine for pain management, the vest helped me to sit through a loud and vibrating musical theatre experience.  Since then I have also worn it to cinema film showings and out to dinner – it sits neatly and snugly beneath clothes and I have increased my wearing time.  It is important to understand that the vest should be used in normal circumstances as an aid to better posture, so shouldn’t be worn all the time.  You must work your own muscles too!

 

 

Have there been any negatives?

The vest is made from synthetic materials so can become quite hot and sticky in warm conditions – however it does look like a “top” so I have stripped off on the odd occasion and still felt dressed!

The ActivePosture products are expensive at a first glance – particularly as many with chronic conditions are unable to work and like myself rely upon benefits for income.  The vest top retails at £99.95.  However I would now say that for a product that has given me both support with my joints and my pain that it is worth the expense……I can see the research and engineering that has gone into creating a quality product and I would rather forego other clothes/meals/coffees in order to own a product that will give me support on those bad days.

In fact my final endorsement has to be the fact that I have been bought some more vests by a relative (taking advantage of the current offer!) as I love it so much!

The ActivePosture vest is a 5 star product for me!

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Active Posture Pin

 

The company currently has a special reduced price for the products and are offering a volume discount – visit the shop here. (Note: this is not an affiliate post and I do not benefit from any orders made)

For information about research behind the product visit the site here.

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Posture Vest pin 2

 

 

 

“I Need You to Need Me” by Pamela Jessen

I have just read a post that I could have written myself – it reminds me of a conversation that was had very recently in our house.  When one half of a couple lives with a chronic condition – be it pain, disability, depression – the “normal” expectations of a relationship change, the boundaries move as partner and lover morphs into either carer or “patient”.

Pamela writes with honesty and gives some realistic suggestions for everyone in her post on There Is Always Hope blog.

intimatecouple

I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:

I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.

How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple.

To read the full post please visit There Is Always Hope Now

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

I woke yesterday morning very early, having only dropped off to sleep in the early hours.  A couple of hours of unsettled sleep and I knew that my bedfellow, pain was going to kick me about for the day.  Despite shivering in the cold early morning, there was that unwelcome yet familiar thin, feverish sheen of sweat all over my body that only comes with deep, intense pain.

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Pain,Pain Go Away

 

The strange thing was that I couldn’t quite tell where the pain was.  Start from the feet and move upwards:

  • feet and ankles: pain, check; left nerve pain worse, check
  • lower legs and knees: pain, check; left nerve pain burning, check
  • thighs: burning, check;
  • hips: can’t move them, searing pain, check;
  • lower back: don’t even go there, hurts too much, check;
  • chest: every breath is creating pain somewhere else, check;
  • shoulders: both dislocated: do not move, check;
  • arms and hands: numb, yet burning, check;
  • neck: spasm and screaming, check;
  • head: did I drink last night???
  • face and teeth: really??!! Yes!

The problem with this pain is that when it peaks nothing will help to reduce it.  No amount of drugs, distraction, heat or other remedies will help.

Pain is deeply personal.  Your pain will be different to my pain.  My own pains are different – the neuropathic back and leg pain I experience from nerve root damage is very different to my other EDS pains. Our pain might be in the same part of of bodies, but we will probably describe it differently and it will behave differently.  The same bedfellow taking a different journey to reach the same location.

Pain (speaker)

When my constant companion reaches these dizzy heights, even my spinal cord stimulator struggles to jumble and alter the pain messages received by my brain.  Some professionals believe that chronic “neuropathic” pain signals are processed by the brain differently, making it more resistant and much harder to treat.  I honestly don’t know and when it reaches these levels, I don’t care.

“Chronic or persistent pain is pain that carries on for longer than 12 weeks despite medication or treatment.” NHS Inform

“Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.” WebMD

 

There are many definitions for “pain” available and there are also definitions on American sites & Wikipedia for “intractable pain“.

The ensuing brain fog means I lose clarity of any situation and irrational behaviour follows. “Mum, why are you trying to do housework like a mad woman?” asks my teenage daughter…..just because!

  • because I can’t sit still
  • because my brain has gone into overdrive yet feels like candy floss
  • because I can’t think straight
  • because I can’t stand still
  • because I feel sick
  • because I have to do something
  • because breathing hurts
  • because doing nothing hurts
  • because doing anything hurts
  • because I don’t know what to do to make it just F.O!

Pain on rain

Remember the old rhyme “Rain, Rain Go Away, Come again another Day”? Mine goes like this “Pain, pain go away, don’t come again another day!”  In this state pain killers just make me vomit, they don’t help anyway.  My beloved heat pad gives a little relief for a short period, but my body seems to know that the external temperatures have dropped despite central heating and layers of clothes.

This pain is exhausting and all consuming.  Eventually I am overcome and sink into a heavy, pain ridden slumber under a weighted blanket yet wake several hours later unrefreshed and still in pain.  What is to be done?  Watch the weather forecast, curse the temperatures (I know Chicago and other places have it a LOT worse, but my body doesn’t know that and anything near zero degrees is horrendous), try distractions and sit it out knowing that this peak will pass.

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Another day may feel wasted – another day of being unable to function, to be online with like minded pals, to read, to watch TV, to listen to music.  But this will calm, it will reduce from the peak to a trough and tomorrow is another day.

So today….I am here, I survived.  I am still in pain and currently sitting charging my spinal cord stimulator as I really can’t cope with turning it off during this cold weather.  The Six Nations rugby is on and feel like I have been in one of those scrums! My other pains are vying for attention now….when the nerve pain is at its worst the others fade into background noise, but today the shoulder and gut pain are shouting loudly.

But here I am typing, smiling, talking and tomorrow is definitely another day!

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Pain, Pain pin

 

Some Ramblings for January Prompts with A Chronic Voice

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.

 

love begins at home

Breaking

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

 

barrier

 

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

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

Strengthening

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

 

stomach

Allowing

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

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

 

to be

 

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

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

Claire x

Monday Magic – Inspiring Blogs for You!

We are already half way through January and in the PainPals house this means that a significant birthday has been celebrated by the hubby.  I couldn’t say anything in my last post as I had booked a surprise weekend away and he reads these blog posts!

monday magic inspiring blogs for you! (3)

For those of you who know me or live with a chronic health condition yourself, you will know that planning any sort of trip away is tricky.  The variability and unpredictability of symptoms and general wellbeing can make it difficult on a day to day basis – so it felt like a risk to book a trip away and I wasn’t confident enough to look too far afield.  We haven’t taken a holiday abroad since before I was disabled from work, and an annual holiday is a thing of the past for many reasons.  So it was with some trepidation that I plotted with the family and arranged a couple of nights away in a haunted 15th century inn on the coast in East Sussex.

Hubby had no idea!  We all managed to keep it a surprise and let nothing slip, only letting on the night before we left.  I had seen a review on the Mermaid Inn, Rye on Kerry’s blog Kerry’s Life and Loves and fell in love with the history and photographs of this historic hotel and town.  “How on earth will you manage on the cobbles and all those hills?” asked my mum, alongside a nagging little voice saying the same in the back of my head, but the bloodyminded side of me was determined to enjoy just a couple of days.  Sometimes it is so important to throw caution to the wind and let the chronic illness take a back seat, whilst “normal” life takes over! The inn is everything that Kerry promised – steeped in history, former residents include Elizabeth I, Shakespeare and Elizabeth the Queen Mother to name but a few, and the beams, low doorways and open fires are all other worldly.  The maze of tunnels beneath and around the inn were thought to have been used by smugglers and it is rumoured that several inhabitants are of the ghostly variety!  No strange happenings on our watch….

Hubby was in for another surprise as we were shown to our room – he was not going to be allowed to forget his special age with the enormous helium balloons that the young engineer had arranged.  With the low beamed ceilings they took up nearly the whole room….did I mention that he had also arranged for a bottle of champagne to be chilling?!

 

 

We had a wonderful meal in the restaurant and the staff were all friendly and accommodating – even if they did wonder why this woman who was struggling to walk had booked to stay in really old building with steep stairs and no lifts!!  I managed though….even walking for some of the day in Rye on Saturday.  A word of warning – Rye with its cobbles and hills really is not wheelchair friendly!

 

I still find it frustrating that I couldn’t manage a whole day out and we spent Saturday afternoon watching a film in our room, but pacing is the name of the game.  This allowed me to go out for dinner Saturday night – to a lovely new restaurant called The Devil in Rye, which overlooked the gardens and walls of the ancient monastery – and then we spent the rest of the evening listening to jazz in a neighbouring Champagne & Jazz bar.  So grown up, nearly sophisticated and great fun.

 

It is a shame that I then slept for long periods on Sunday and all this morning, but sometimes it is worth using up all those spoons in one go.  So Monday Magic is teetering into Tuesday as I catch up from my slumbers……but I have found some blogs for you (even one about Elizabeth I) and hope that you will sit back and enjoy!

https://www.radiantnubeginnings.com/smile/

https://helensjourneysite.wordpress.com/2019/01/09/wellbeing/

https://despitepain.com/2019/01/11/how-to-help-doctors-listen-and-understand-better/

https://invisiblyme.com/2019/01/10/12-life-changing-reads-2019/

https://playdatesparties.com/how-to-get-motivated-to-clean-when-overwhelmed-by-mess/

https://www.eclecticevelyn.com/include-yourself-in-your-schedule/

https://notesfromtheuk.com/2019/01/11/professional-hazards-of-being-a-virgin-queen/

https://christiehawkes.com/forgiveness-starting-2019-with-a-clean-slate/

https://wehavekids.com/parenting/Encouraging-Children-to-be-Independent

https://www.momfever.com/2019/01/a-positive-way-to-look-at-january.html

Please follow, like and share these bloggers! By the way we somehow managed to wedge the balloons in the back of the car, around the wheelchair, and they are now adorning the lounge!

Have a great week,

Claire x

 

My Guest Post “Claire’s Story” on Young, Sick & Invisible

To start the new year I am honoured to have had my health story featured on the blog “Young, Sick and Invisible”.  I do know, painpals, that I don’t strictly fall into the group “young”, but Bethany who writes the blog does and is a pretty inspirational young lady, so please have a look at some of her posts and her regular guest blogger post.

guest post claire's story pin

So if you feel like reading a bit more about my Ehlers Danlos Syndrome and chronic pain – and to see some very glamorous pictures – have a look here where I answer the following:

1. Who are you? Name. Engaged/ Married Any children/grandchildren? Give as much or as little information as you feel comfortable with.
2. What Chronic illness/illness’s is it you have ..? With a brief description on what it is/what they are
3. What did you love doing before you was diagnosed ..?
4. Are you still able to work (explain briefly what you do and if you’ve have to lower hours because of the illness/illness’s)
5. When did you first develop the chronic illness/illness’s (or think they started – what were the beginning signs)
6. Was the diagnosis easy or not ..? – also explain how you was diagnosed and any struggle you had
7. Did you search the internet looking for help ..?
8. Where do you flare ..? – describe a flare
9. Try and describe the pain (maybe even using a metaphor like (Raynauds is like being sunk deep into ice numerous times a day)
10. How long do you flare and how do they affect you ..?
11. How do you manage/cope with the flares ..?
12. What are your main triggers ..?
13. What medicines/supplements do you take ..? (Briefly explain ones you have tried but don’t/do help)
14. What is your biggest tip for those who suffer from the same illness/illness’s as you ..?
15. How has your illness/illness’s impacted your life ..? (Positively and negatively)
16. What has it stopped you doing ..?
17. How has it impacted on your friendships/relationships ..? (If it hasn’t then don’t worry about this question)
18. How do you stay positive ..? – what has your illness/illness’s allowed you to do or become (positive) for example have you become more understanding ..? You might have stopped work but learnt to spread awareness ..?
19. What is your hope for the future ..?

Guest Post: ‘Claire’s Story.’

January 1, 2019

Claire S.

Hi all, I’m Claire Saul, married to Duncan, 3 children aged 22 (boy),19 (boy), 16 (girl)

I have Ehlers Danlos Syndrome with POTS (postural orthostatic tachycardia syndrome) chronic pain & nerve root damage, migraine, gut motility problems, Raynauds

The EDS is a genetic condition of the Connective tissue – my body produces faulty collagen – so it can affect any part of the body that contains connective tissue.  Normal connective tissue is like elastic, EDS connective tissue is more like chewing gum. I have regular dislocations, particularly my hips and shoulders – I started dislocating aged about 8.

POTS is condition that affects the circulation on changes in movement, temperature.  When I stand up my blood pressure drops, meaning my heart has to beat quicker and harder to get blood round the body – but the circulation to the brain is reduced, causing me to pass out!  This can happen when I stand up, get out of the shower or when the weather is hot/sunny. My hands and feet turn purple as blood pools in them.

Before I was diagnosed I loved my job as a palliative care nurse, I loved socialising  & hosting dinner parties – dancing and going to yoga classes! I am not able to work – I was a palliative care nurse, but due to the chronic back and leg pain was medically retired due to disability.

EDS is genetic so I had signs from an early age – “knocked knees”, flat feet, dislocations, poor coordination, pain, headaches (prob early migraines) all before age 10, then during my teens dislocations increased, def migraines, fatigue, circulation probs (now realise POTS), Raynauds and “growing pains” IBS. Aged 21 a disc ruptured in my back and went into cauda equina (foot drop, severe pain, bowels and bladder not functioning) – had first back surgery. Chronic back problems – started here with nerve root damage

My shoulder pain was increasing and preventing me from doing some normal activities, so my GP referred me to the Hypermobility clinic at UCLH (Prof Graham’s clinic).  I was lucky that then a secondary referral from a GP was accepted – it has changed now and the patient has to be referred from another hospital consultant (tertiary).

The actual diagnosis was easy as I fulfilled so many criteria and my mum had gone with me so was able to give family history.  Although she isn’t formerly diagnosed, we can see that both she and my grandma when she was alive have symptoms.  I was given a diagnosis very quickly,  but no support or follow up – was told that my management needed to be local.

But the time it took to join the dots of various illnesses was not easy. I was finally diagnosed aged 42

To read the rest of my answers to Bethany’s questions visit Young, Sick & Invisible here!

Thank you so much to Bethany for having me as a guest blogger!

 

Dear Chronic Illness – has anyone told you that Christmas is coming?

Dear Chronic Illness pin

Dear Chronic Illness,

Has anyone told you that Christmas is coming?

It is such a busy time of the year when everyone is supposed to be jolly, enjoying the madness of Christmas shopping, wrapping gifts and dressing for parties.  You probably don’t know, but food and drink play a huge role in the festivities – meals out with loved ones, chocolates and nuts, mince pies and egg nog, Christmas cake and plum pudding.  The television is overflowing with chefs telling us how to prepare for a magnificent feast timed to perfection.

Christmas dinner

Shop fronts and homes are transformed into a winter wonderland as decorations and lights sparkle.  The smell of a real Christmas tree invades the crevices of many a house, this one included.  The sights, sounds, tastes and smells of this time of year can be truly wonderful – glitter and glamour, carols and Michael Buble, cinnamon and nutmeg, mincemeat and mulled wine.

I want to enjoy it.  I want to take part and accept invitations to party.  I want to bake and give gifts to friends and family.  I want to feel joyful.

Christmas cake

You are my closest companion – with me 24/7, you know me better than anyone.  But the Christmas message doesn’t seemed to have reached you.

You hinder me and slow me down, meaning that I can no longer join in how I want to.  The invitations turned down at the last minute, the exhaustion after one trip to the shops, the increased difficulties dressing the tree and “decking the halls”.  The guilt at putting more on loved ones, being unable to host parties or bake up a storm.  The food once so tempting, now leaving only discomfort and tears.

You watch the weather and as the cold and damp creep in with the winter, you ramp up the chronic pain leaving my body struggling to leave bed, let alone leaving the house.  My hands fumble over Christmas wrapping, my back fails to keep me upright, dislocated joints reach a new level on the pain charts.

The expectation that Christmas should be “the most wonderful time of the year” is not the perfect mixer for brain fog and reactive depression.  Some days it is a toxic cocktail.

But as you are my constant companion, I must teach you about the festive season and in turn you must teach me how to live it with you cradling me.  I will try so hard to feel acceptance of you rather than resenting limitations that may be placed upon me.  When I feel you knocking at the door, I will learn to slow down, to say “no”, to pace myself.  My limitations will become my strength as I enjoy a slower, quieter but no less precious time with loved ones.

cradle
You cradle me

I know that you won’t be taking a holiday for the festive season.  I know that neither you nor I can guarantee how present you will be at the festivities from hour to hour, day to day.  But I do know that we must rub along side by side and cope in the best way that we can.  If an outing to a party is skipped or a visit to relatives proves too much, then so be it.  If it is impossible to throw off a low mood for festive cheer then so be it.

merry christmas greeting card
Photo by rawpixel.com on Pexels.com

We will wake together each morning and go to bed together each night.  Just like every other day, we will take the holidays as they come……but perhaps now that you know Christmas is coming, you could loosen your cradling arms just a little and give me some slack?

Merry Christmas,

Claire x