Tuesday 24 July 2018

It wasn’t down to the NHS to ‘fix me’ - a harsh but much needed truth


Well as I recently read ‘sometimes you have to go back before you can move forward’. So finally I’m returning to writing this blog, as something in my heart tells me I need to. Why? Well so much has happened since my last post on 28th March 2014. So many lessons I’ve learnt, as I’ve gained the confidence and knowledge to acknowledge that there really is no separation between mind and body, and the harsh truth that it wasn’t down to the NHS to ‘fix me’.

Let’s go back then to where I left off. Reading my last post, I can clearly see I wasn’t in a good place. Back on morphine for muscle spasms in my lumbar spine, I’d been signed off work. I’d only just returned to the world of work after years out due to pain, and there I was. Two weeks into a new job I was off on sick, and as things turned out I didn’t return to work for seven months. 

Full of anger and frustration as pain dictated yet again – or so it felt. On reflection I now know that my spine – which is my stress barometer – was actually communicating with me.  Or rather ‘screaming’ at me. Six months before returning to work I had witnessed the demise of my beloved Nanna Dolly – my rock, my ‘safe’ person. A proud lady who lived to 92 years young, her final few months I would not wish on anyone. A story for another time and place, but let’s just say that following her death I consulted the Parliamentary and Health Ombudsman, which upheld my complaint and positive changes happened as a result, all be it too late for my nan who had suffered delirium in her final weeks, and was on a ward alongside people with dementia.

So when I secured a job working for a dementia charity, it would turn out my subconscious mind didn’t think it was so great. Still grieving for my nan, yet surrounded by older people, many who presented symptoms / behaviours I had witnessed, the mindbody (let’s keep that as one word as there really is no separation in the two), thought it would protect me. Rather than acknowledge what was really happening – the mental anguish associated with grief – it started firing off pain signals. A pattern that had become all too familiar, but something that in some ways is easier to deal with. You have pain – you go to the doctor. They give you a pill (or in my case lots of pills), and you wait for them to numb the pain. If you are lucky the pain reduces, though all too often the acute pains remains in the form of chronic pain.

But hang on Emma, how can you say all this with such certainty? Because without knowing it, this scenario had become my life. A traumatic event happened and my back ‘went’. But making the connection between the two – well it was thanks to someone who introduced me to the work of SIRPA and its founder Georgie Oldfield – that was the game changer. I clearly remember taking her book ‘Chronic pain your key to recovery’ on holiday to Scotland in the July of the same year (I was still off work). I could not put it down. I recognised myself throughout the book, but within the pages was hope.



I’d already had a mental ‘shift’ just a couple of weeks earlier, when I had returned to Queen’s Medical Centre in Nottingham to see my spinal consultant. Having come out of the hospital in tears of frustration after the scan results I’d gone for weren’t there, I sat on a grass verge by a stream. My husband Matt and I got chatting about feeling ‘stuck’. As we got back into our car, a young boy maybe aged 2 in the car next to us, said hello. He would not take his eyes off me and he waved as his mum (who was heavily pregnant) drove off. I just sobbed. It was like ‘this is it’ – stop crying as this (a baby) is your future.

Another significant development during the same period happened when during a CBT session at the pain clinic, the word ‘anxiety’ was referred to. Whilst I don’t always agree that labels help, there are times when they do. This was one of them. A label I could relate to – I had anxiety and had actually had as long as I could remember I just hadn’t realised. My ‘fight or flight’ response had become so heightened it was switching on at the least thing. It explained so much, and at least gave me a reference point.  The key (or so I thought) was learning to manage my anxiety.

I then met with Georgie (from SIPRA) and had an assessment re: the causes of my physical pain. We spoke of Adverse Childhood Experience’s (ACE), of which there had been many, and though not a victim I learnt it is ok and necessary to acknowledge how I felt rather than repress down.  Georgie’s approach to the relief of pain once and for all evolved from the work of the late Dr Sarno, who came up with the concept of Tension Myoneural Syndrome (TMS). In a nutshell this is when physical pain is caused by the repression of anger and other negative emotions. The subconscious wants to protect us from certain emotions so rather than let them rise, it produces pain as a distraction to focus on rather than the emotion.

My employer had kindly kept my job open, and I finally returned to work. But then another curve ball was about to be thrown, albeit a positive one. I had started to feel unwell, but this time it wasn’t my back. It was an intense pain under my right rib cage. I really didn’t want to be ill again – I was just getting my life back on track. I kept putting off going to the doctor’s but on 23rd December I remembering thinking that the surgery would be closed over the festive period, so I really should go get seen. I knew they’d ask if I was pregnant – they always ask a woman that – and with a history of irregular periods I thought well I’ll do a test so I can assure them I’m not.

Imagine my surprise when those two lines turned blue!!! Yep I was pregnant. 



Off I went to the doctors to explain that I’d just diagnosed what was making me feel ill (note bucks fizz in pic for effect I didn't drink it). And there lies a whole different story – one with a host of ups and downs and even a mobility scooter as my back pain returned, and ultimately took me on a different path. I didn’t realise it at the time but I still had a long way to go in terms of TMS and becoming pain free. Pain had protected me from my emotions for so long, I longed to be pain free but pregnancy and becoming a new mum – there was a whole new wave of emotions to come and not just the ones you’d expect. Until the next time keep safe.

Emma xxx





Friday 28 March 2014

Have The Confidence to Trust Your Instincts When It Comes to YOUR Health

At last I am able to blog – all be it I am laying horizontal but at least I’m not on quite such strong medication for now. You see I want to share with you what’s been going on here, in a bid it gives you the confidence to go with your instinct, intuition, inner wisdom, gut (it’s all the same to me), and how we should all insist we are treated as an individual and listened to when it comes to our health. EVEN if we are a chronic pain sufferer.

So almost two weeks ago something in my lower back went ‘bang’. It literally made me scream out loud and for a flash I was transported back in time seven years to when my back first went ‘bang’ and my spinal journey began (I was diagnosed with spondylolisthesis).  If I had listened to my ‘gut’, rather than keep listening to others, maybe I shouldn’t have been surprised that my back had given way again – I actually felt something move in my right lower lumbar. 


You see I have been telling the physiotherapists at hospital every week for the 15 weeks that something was not right, and hasn’t been for a long while. I think they believed me at times, but the standard answer was ‘we simply don’t know what it is’ – it’s probably chronic and linked to everything that’s gone on prior. Ok maybe they didn’t know, but I just feel like I’ve been banging my head against a brick wall.

What I’ve learnt is that when you became a chronic pain sufferer as I have, it seems that every back pain is attributed to chronic pain. But hang on – what about if the pain is ‘real’ and is there for a reason? To tell you something is not right? And I’m not just talking acute flare ups on top of chronic pain. I remember asking my pain counsellor just this and he told me that you have to listen to your body. He gave an example of somebody with chronic pain who actually worked as a hypnotist, and used their skills on themselves to rid the pain signals. Great they had no pain, but actually it turned out they had a genuine medical issue that needed attention and they got in trouble with their doctor for not going sooner – at times it feels you just can’t win.

Looking back my body had been giving me clues that something wasn’t right, in particular the cracks, clunks and pain coming from deep within my pelvis. I have been using all the chronic pain techniques taught to me including hypnotherapy, emotional freedom technique, pacing, pilates etc. But the pain and noise have remained. Time and time again my concerns have been dismissed, getting told that all people get the odd noises. Yes but the ones I am getting are so deep, painful and stop people in their tracks as they say “is that your back?!”

Despite all of this, and myself not wanting these signs to be ‘real’, I recently secured a job – the first in years and a massive step forward. But guess what? I’ve already been signed off sick, and had such intense pain and muscle spasms the only thing left to take at one point earlier this week was morphine.  Still no-one knows what is going on, including my GP who said to me as I cried buckets "It’s shit – you are too young for all of this." 

Well whatever ‘this’ is, I am determined to get to the bottom of it, not be fobbed off, be treated as an individual, and continue to listen to my ‘gut’ which is telling me five years post spinal fusion, something is not right. I see my consultant on Monday….

Until next time xxxx



Friday 7 February 2014

My Very Own Words of Wisdom

As part of my story which I recently shared over at the blog Pouting In Heels, I went on to share my very own words of wisdom which I wanted to share with you here also.

I never knew I had wisdom, but when asked to reflect on my experiences I began to start to see the lessons I had learnt. I also began to understand it is from sharing our experiences that we learn from others and grow. So many people have opened up and shared their wisdom with me, here's mine to share with you:

Photo - Me sat last year thinking looking out over Lake Windermere

·          Be kind to yourself and take care of your body. Respect it – think nutrition and allow yourself to rest

·          Don’t judge others – remember the majority of disabilities we are unable to see and it’s not a competition.  I remember following surgery asking a woman working in a shop to pass me a newspaper from the bottom shelf.  She tutted and I felt obliged to justify myself why I had asked. She responded ‘well you think you’ve got a bad back, mine is terrible’. I just burst into tears
  
·          Grief is not only when someone dies, it relates to ‘loss’ – in my case the loss of my old life

  • Remember mental health is exactly that – mental health. If you are offered help it does not mean you are weak, it simply means that your mind is poorly – just like other parts of your body get ill.. I have learnt just how powerful the human mind is.

·          Tablets have a time, a place and usually side-effects. Of course take if you really need them, but for me I’ve had enough of taking pain killers, though of course so do if I need them. I’ve gone onto find that acupuncture usually works for me, as does keeping stress at bay and moving – going for a walk is the best medicine

 Photo - Getting outside really can be the best medicine

·          Remember you don’t see people on their worst days as they are usually unable to leave the house!

·          Try not to moan about work – trust me work gives a person a sense of purpose, something to get up for in the morning. It may sound good the thought of not working but the reality is very different

·          When the chips are down you really learn who your true friends are, and in my case that I have the most amazing husband. We really have tried and tested the vows “in sickness and in health”

My key phrases throughout have been and remain ‘Everything happens for a reason’ and ‘Things always work out in the end’ – I truly believe this.

What are your words of wisdom? What lessons have you learnt from your experiences?

Until next time

Emma x



Thursday 6 February 2014

My Story – I Wouldn't Change It

Just before Christmas the very lovely Katie Portman who writes the blog Pouting In Heels, asked if any of her readers felt brave enough to share their story. I had already shared mine to a certain degree, but felt that it was about time to share it more fully, with a view that it might just help others in a similar situation. So that’s what I did, I wrote it honestly and openly, and it went live this week. If you didn’t see it click here. But not only did I share my story, I found the confidence to FINALLY start this blog. Something I have been thinking about doing for the last 6 months.

Even if you read my story over at Pouting In Heels, you might want to read it again, as here is a more in-depth version., oh and excuse the meaningless tattoo - I was young! Here goes:

I might look ‘normal’ on the outside but inside there are titanium rods and screws, repaired disks, muscles that don’t work when they should, muscles which overcompensate, chronic pain and real pain. But do you know what? I wouldn’t change the amazing journey (sorry if sounds cliché) that I’ve been on, as I have learnt so many lessons. So don’t feel sorry for me – it drives me mad when people say ‘poor you’. Instead I hope to inspire.

In 2000 I graduated from the University of Central Lancashire, with a BA (Hons) in Public Relations. I had a couple of jobs before becoming press officer for a government-funded organisation. During this time I was fit and healthy, went to the gym regularly, and ran the Great North Run.

2007 was a significant and busy year. I moved house, was promoted to PR Manager, and got married. I’d had a few twinges in my back but thought nothing of it. Then in the November my back went – I could not move. Tests revealed I had the spinal condition Spondylolisthesis, something I had been born with but typically only becomes symptomatic in your twenties (I was 28). One vertebrae had slipped over another giving me a dent in my back, a prolapsed disk, muscles that were constantly in spasm and leg symptoms.  This was never part of my life’s plan. I was off work for a few months, determined that all would be ok. So I returned, but struggled to drive, could not sit for long and was in constant pain, so the following August I left the office and never went back.
  
In 2009 having tried every type of spinal injection, physiotherapy and acupuncture I had my spine fused. I WOULD make a full recovery. But hang on – I was still in serious pain and still walking with a walking stick - I had a tear in another disk. Anger and frustration led to depression, which I failed to recognise until everything seemed to go ‘bang’ – I remember crying solidly for 12 hours and my mother-in-law saying it was time to go to the doctors. Of course I started crying as soon as I saw the doctor who said to me ‘I’m surprised you’ve not been earlier’.

He was right I should have gone earlier about my mental health – I was very depressed. Part of the reason I had not wanted to admit this was my father had taken his own life nine years earlier, and I didn’t want to admit to being depressed as some say it can be genetic. I look back and think how totally stupid this was, my whole world had fallen apart and I was living in constant pain – like so many I was being far too hard on myself. I should have asked for help earlier. I took anti-depressants for two-years, which help significantly and I no longer need them. Instead I regularly see a Cognitive Behavioural Therapist at the pain clinic, and use a host of other techniques which I will share in future posts.

In 2011 I had further surgery and was determined to make a full recovery, but like many have gone on to live with chronic and real pain, though it is significantly less than it was. I am determined 2014 is going to be a great year. I have finally met a fantastic NHS physio who is treating me as a ‘whole’ person. Including the pain clinic, we are doing our best to get to the route of my remaining pain, and I do my best to become physically and mentally stronger every day.

Today is Time to Talk day, a day designed to get more people talking about mental health. It has been organised by Time to Change, which aims to challenge mental health stigma and discrimination. If you want to join in, find out more or access help then click the links.

Btw, I also wrote some of my ‘pearls of wisdom’ for Pouting In Heels, and will share them here soon.
Until next time ….

Emma x

Sunday 2 February 2014

The Sun Always Follows Rain … eventually

I was going to start my first post by telling you exactly why I’ve decided to start this blog. Well I’ll get onto that in a sec, but first I’m going to share with you what feels like madness at what I am hearing today. You see as I write this it’s only 3.15pm and already I’ve been told how a family member’s neighbour died suddenly yesterday, how a friend’s partner has been rushed into hospital this morning, and how another friend has lost her auntie only one month after losing her brother-in-law.

Of course I am saddened for all those I refer to, but though they might not realise it, and certainly might not want to hear it at the moment, is that for them all, the sun will shine again even though it may not feel like it at the moment. You see it always does – the Sun Always Follows the rain – sometimes sooner than others but it always does eventually.

How do I know this? Well I’ve certainly been hit with some major curves balls, as do we all at certain points throughout our lives. It’s just that some of us get hit by more than others. But it’s what we take from these curves balls that’s important, the lessons we learn, what we do as a result. As the weeks and months go by, I promise to share my experiences, and the lessons I’ve learnt along the way by writing openly and honestly. I will also share techniques I have used to keep me focused and sane. If by doing so I help or inspire just one person then it will be worth it. And on a selfish note, I love writing and if writing helps me feel better then that is a bonus.

So what exactly have been my ‘curve balls’.  As I’ve said there have been many, but as I refer to them – and write about them on this blog – let’s be clear I don’t do it for pity but some of them are what some would class as ‘taboo’ subjects.  Take for example my father’s suicide, my nan’s suffering in her final months, my chronic pain and how I became depressed during my illness – which I will write about in my next post. It’s only by people being honest and open that such subjects will become less ‘taboo’.

But I promise this won’t be a depressing blog. Twice over the last month I’ve been called an inspiration, as I reach out and help others.  I don’t see myself as this, I think quite simply the people who called me this are more so referring to the fact that I am open and honest and do my damndest to keep smiling.
In time those I referred to at the start of this blog will learn and grow from their experiences, and for those that have lost loved ones, will cherish the memories.

On a final note the weather here yesterday was awful, heavy rain, cold and dark. Today as I look out there is not a cloud in the blue sky. What a difference a day makes and how apt is the title of this blog. And if you wonder about the photo under ‘About me’, yes they are my feet. The photo was taken as I looked out to Lake Windermere last year for inspiration. It certainly worked!

Until next time

Emma x 
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