Tag: #ChronicPain

Once there was Social Security, now there’s the Tories and their DWP (Pt.2)

“I was awarded DLA for life” I told her, “yes” she replied “that meant for the life of the benefit, DLA has been replaced by PIP”

Time Jump – Sometime in late September 1979, Simpson Ward, The Brook General Hospital, Woolwich. ‘Green Card’ discussion …

… I was visited in my hospital bed (I’d been bed bound for more than a month) by a very nice lady, not hospital staff, I can’t remember how she introduced herself but she was some kind of social worker/social security officer. She’d come to talk to me about a ‘Green Card’. She went on to explain that a green card is given to people with a life long disability, and she visits the hospital, talks to the ward sisters and is told which patients have injuries that would render them permanently disabled and thus qualify them for said ‘Green Card’. I was just 19, stubborn and naive to say the least. Yes I knew I’d really messed up my leg … but disabled? Get out of here … which is pretty much what I told her to do, but politely. “No thank you” I said. And looking back, my first foolish act of denial, something I’ve struggled with / suffered from ever since!

Time Jump – Sometime in late summer 2001, St.Leonards, East Sussex. ‘DLA Medical Examination/Assessment’ by an ‘old school’ ex-army doctor …

… I hobbled into the examination room aided by my usual elbow crutch and custom made ‘appliance’, my orthopaedic splint. A middle aged man, late 50’s or so, maybe older, was sitting behind a desk head down writing with a pen. In front of the desk was a pair of chairs, those moulded plastic waiting room style chairs. Behind those chairs at the back of the small room was an examination couch/bed, like the ones of that era seen in every GP’s consulting room.

Without looking up, the man gestured for me to sit, holding out his arm, hand open, palm up towards the 2 plastic chairs. I manoeuvred over carefully, crutch clicking as they do (or did in those days) and gently, carefully lowered myself onto the chair as I had been taught by physiotherapists so as to minimise strain (thus pain) to my lower back. The chair was too low so the pain was uncomfortable. Once seated no doubt accompanied by my unintentional but audible puffs, pants and winces at the discomfort, I started to explain my situation/condition. Abruptly, again without looking up from his writing, he held up his free hand, palm up at 90 degrees in the universal ‘STOP’ gesture, still without looking up, he said “I will tell you when to speak”. I was taken aback by his abruptness, no, rudeness, but I was also aware that if I were to answer back there may be financial consequences, and I was here out of desperation, to claim what I had been told 22 years earlier was my entitlement, but I’d never claimed out of pride.

So, I sat quietly, obediently, while he finished his writing. Eventually he put down his pen and asked me a load of questions about my mobility etc, to which I was to answer either ‘Yes’ or ‘No’. He then asked me to undress and climb onto the examination bed. “Do you need me to remove my splint?” I asked “Yes of course” he replied, to which I replied “then I’ll need my wife’s assistance”. My wife and two year old daughter were waiting out in the waiting room. He got up and went to fetch them. My wife helped with the splint straps which are too low and too much of a bend for my back to bear. He instructed me to strip to my underpants and lay on the examination couch/bed, which was quite a climb and struggle, so my wife helped me. He looked at the scars on my leg, the bone graft harvesting scar on my hip, and the scar on my back where I’d had the most recent spinal fusion surgery. He also asked about the 14 inch scar running from scrotum to above the left hip, but that’s another whole story on its own!

Very quickly his abrupt and harsh attitude changed. “That’ll do” he said, “take your time and get dressed” … “I apologise for my attitude earlier” he went on as he returned to his seat and started writing again. He put his pen down and looked at me in the eye this time, “you wouldn’t believe what I see and the tales I hear from people coming through that door” he said to me, he continued “I’m an ex-army battlefield doctor, I know genuine injury, pain and suffering, but I have to initially at least treat everyone who comes through that door as fake”. “I understand” I replied as I struggled aided by my wife to refit the splint as quickly as possible … “But you” he continued “you are genuine, and I apologise again for putting you through this examination ordeal … but” he gestured in a half shrug. He looked at my wife with my daughter in her arms now and said “you don’t have to worry, whatever meagre financial assistance our government has deemed fit to grant you, will be granted, and for life, because of what I am about to write on this form”. “Thank you”, we both replied. “Why have you not applied for DLA before?” he asked. “Stubbornness and youthful pride” I replied. He nodded, and we were done, out of there with DLA secured for ‘life’ … or was it?

Time Jump – October 2019, Eastbourne, East Sussex. PIP assessment by ‘medical practitioner’ and her IT questionnaire …

… A cheaply partitioned office, no examination bed/couch, not much privacy, just a keyboard and monitor from which she read questions about my mobility and moved her mouse to click into boxes, never really taking her eyes off the screen to look at me, though sometimes glancing up at the clock on the wall. “Shall I strip, remove the splint, show you my surgeries?” I asked, “no that won’t be necessary” she replied, again staring at her screen … “I was awarded DLA for life” I told her, “yes” she replied “that meant for the life of the benefit, DLA has been replaced by PIP” …. “can you raise your arms above your head?” she asked in the same monotonous tone.

I would go on, but I think everyone who is interested in reading this knows how it works. My DLA was stopped of course. I’d made the silly mistake of making it to the examination centre.

My point of this post – Once there was Social Security for those in genuine need and I had paid in the maximum amount of National Insurance, the tax that was quite rightly levied to pay for those in need. But then 2010, the Tory/LibDem coalition, ideological ‘austerity’ and their wicked and shameful attack on the disabled. Where previous governments had supported DLA (Disability Living Allowance), awarded for life, because what would be the point of wasting time & money on dragging these people back for repeat examinations? This new (and somehow still sitting 12-1/2 years later) government, decided to ‘rename’ DLA as PIP thus terminating the life of DLA and forcing all those who were entitled to it, depended on it, needed it, had then again to endure humiliating re assessments by so called ‘medical practitioners’ guided by and decisions made by a ‘points based’ database delivered through a web page on a computer screen.

The government took away a vital lifeline for thousands of genuinely disabled people and spent more taxpayers money than they saved awarding the WCA (Work Capability Assessment) to French IT firm ‘Atos‘.

“I was awarded DLA for life” I told her, “yes” she replied “that meant for the life of the benefit, DLA has been replaced by PIP”

Thank you for reading.

Selling off NHS for profit: Tories’ and Liberal Democrats’ links with private healthcare firms revealed

A Valid Epiphany? …

The date Pink Floyd’s ‘Another Brick In The Wall Part 2 was released as a single, and randomly scrolling through my Twitter ‘Music‘ list prompted me to post the ‘quote tweet’ below. And then down a rabbit hole on a whistle stop tour of unwanted memories my mind hurtled.

Hospital bed memories – November 23rd, 2021, scroll on …

1st Stop – Simpson Ward, The Brook General Hospital, Shooters Hill, London

November 1979, my 2nd stay in Simpson Ward, this time for 3 weeks, ‘Bone Grafting’ surgery & recovery. I wrote about it a little [ here ] the surgeon was saving my leg by removing bone from my hip to repair catastrophic damage three months earlier to my right Tibia, which I wrote about [ Here ] and [ Here ] – I’ve always loved my music, and that song was being played on the little radio I listened to in my hospital bed.

There it is, that protruding part of your hip, you know the part you sometimes catch on doorframes or other obstacles and it hurts! Well it’s a great site for ‘harvesting’ donor ‘bone’, make a sizeable incision, clamp it open to expose the ‘Iliac Crest’ … and off the surgeon goes with his hammer and chisel, hopefully collecting enough bone to replace missing bone somewhere else, in my case, my lower right leg, where bone had gone missing, I wrote about that [ Here ]

2nd Stop – Simpson Ward, The Brook General Hospital, Shooters Hill, London

Time Jump to 3 months earlier, a warm and sunny Monday morning in August, one week exactly from my 19th birthday, and in a ‘Split Second‘ my life was changed forever … I’ve told you all about that [ Here ] Warning! Graphic Content!

3rd Stop – The Present, 2022 January to Present

What a grim year! Energy crisis, Mortgage rates, Inflation, the war in Ukraine, the Tory government accelerating their 12 years and counting mission to fuck everything up they touch, voting to pump raw sewage onto our beaches, causing the £ to crash, installing more unelected leaders as PM. Even the Queen gave up, just one handshake from Liz Truss and HRH decided Enough is Enough!

My own family’s finances are in dire straits. In March the car went to try and offset mortgage payment rises. As I write this towards the end of November, the heating has just gone on, but with the thermostat set at 14.5c …

… But now (finally I hear you say) to the point of this whole post, my ‘Epiphany’ of sorts. My memory being jogged and taken on a journey by seeing the Twitter post above, the anniversary of the release of a song. All this year I have spent sleepless nights and anxious days worrying, beating myself up and feeling so bloody guilty about not contributing more financially to the household budget. I have the time, on some days the chronic pain [ I told you about Here ] is not ‘as bad’ as others. I’ve been surfing the job sites, set up google alerts & subscribed to e-mail lists, hoping maybe, just maybe I’ll see a job that I “could” do.

But November 23rd, 2022, after my memory carried me back to the places I’ve mentioned and linked to above, a voice inside my head told me not to be so hard on myself. I’m in my 63rd year and worked hard for almost 40 years despite being declared ‘disabled’ at just 19 years of age. I went to bed at 8:00pm and slept almost all night but I dreamed, I dreamt of pain & surgery, processing my early evening thoughts no doubt. When I awoke and the family were off to work and school, I went in search of an old blog post to remind me of the point where I had to give in to a disability I’d been in denial of for most of my life. I reposted it unchanged, word-for-word, as it is still relevant today. That post marks the point in time I finally admitted to myself that I was, and had been disabled for a very long time. Apart from the surgeries I’ve mentioned and linked to above, there was a ‘Spinal Fusion’ in 2000, another birthday spent in a hospital bed, this time my 40th! The damage done to my lower spine caused by 20 years of walking with a ‘corrective gait’ (limping in other words), putting uneven load on the vertebrae and discs leading to herniation and rupture. That surgery left its own side effects and complications, ‘scar tissue adhesion’ I was told a couple of years later when seeking a diagnosis for ever present sciatica and numbness in my ‘good leg!’ Then later after the 2013 MRI scans a diagnosis of ‘Peridural Fibrosis’ …

… and Traumatic Arthritis of the spine, knee and ankle! Yet I still beat myself up, feel laden with guilt that – ‘I’m NOT OUT THERE EARNING’.

So, to conclude my ramblings here on this ‘Epiphany’ of mine, probably short lived as no doubt I will revert to blaming myself for everything, but in this ‘living in the moment’ clarity … what do YOU think readers? Is my epiphany valid?

Thank you for reading.

Once there was Social Security, now there’s the Tories and their DWP (Pt.1)

From the archive: Reposted due to the crippling impact now of mortgage interest rate payments, energy costs, inflation etc. I realised there must be many disabled people like myself with a similar, depressing and scary predicament. We ‘were’ just about managing … but not now

I thought I’d write about my experiences with the DWP since turning to them for some help in 2012. I will start with a letter I wrote to my GP and others some 13 or so months later in 2013 …

A letter to; My Doctor. My MP. The DWP. The Courts Tribunal Service.

Over a year ago, mid August 2012 after several months of ever increasing pain & reduced ability to work I eventually booked an appointment with my GP. This was the first time I had seen my GP since 2004. Being self-employed, I had soldiered on with my aches & pains for 13 years since spinal surgery in 2000. In fact 33 years since 1979 when I had a rather nasty Road Traffic Accident that started all my long term skeletal problems. 

My GP was great and agreed to get me to specialists for advice on any possible treatment for my long term ankle and more urgently, back pain. 

Meanwhile being self-employed with no sick pay and a young family, mortgage & all the associated bills thereof, I contacted the DWP. It seemed there was something called ESA. An advisor at the JobCentre told me via telephone that this would be an entitlement given my contributions to National Insurance, income tax etc since starting work at 16 in 1976. 

Despite the GP prescribed pain killers, my back pain worsened, my income trickled down to zero during the next couple of months & inevitably, my customers looked elsewhere. I was awarded ESA, contributions based at £42 per week. Not very much but every little helped. I had by now contacted my bank, credit card issuers, loan companies, mortgage company etc to inform/warn of my financial predicament as one is advised to do in such circumstances.

In November I was seen by a specialist regarding my long term ankle pain as a result of my 1979 accident. Luckily I have an orthopaedic splint made for me in 2003 by the Conquest Hospital via the then orthopaedic specialist, which along with the painkillers helps alleviate the pain. This made the updated diagnosis of traumatic arthritis of the damaged ankle a lower priority than my agonising & incapacitating back pain. I was placed on a list for some targeted pain killing injections in my ankle. Not a long term solution I felt but I went along with the consent.

In December I wrote to my GP asking for progress on the referral for my back problem. At the same time I was asked to attend an ATOS Work Capability Assessment (WCA) in Hastings. This I painfully attended under threat of losing my £40 odd pounds per week award. I was puzzled at not being asked to remove my surgical splint for the medical exam but then they are the experts, aren’t they? In January 2013 a letter arrived from the DWP, as a result of the WCA exam I had been placed in the Work Related Activity Group (WRAG) and would need to attend a meeting with a ‘disability adviser’ at my local Job Centre. This I duly attended (again under threat of loss of payment) and struggled up to the first floor (no lift) in much pain & discomfort only to be told that I was obviously unfit for any work. As this all seemed very illogical and with no sign of any appointment with a back specialist I asked that the DWP decision be looked at again and subsequently appealed against the decision.

February 2013 I receive a letter from ‘VirginCare‘.(Note: NHS Logo) With an appointment date to see an ‘Extended Practitioner’. 

This centre in Hastings I attend and am advised to have an MRI scan. This took place in Eastbourne later that same month. At the follow up feedback appointment back in the Hastings Virgin Care centre I was told that I need to be referred back to the NHS to see a surgeon for severe damage to discs & nerve damage. 

By this time my business is now gone. My financial problems are much worse with CAB advising Bankruptcy as my only option. I have constant pain & discomfort. On a visit to my GP (to request the DWP demanding ‘sick note’) I discuss further pain relief & Neuropathic tablets to help with the constant sciatica & feet pain. My blood pressure is very high. I very reluctantly ask for help with moods having recognised a return of depression which I had been treated for in the late 1990’s. My GP is again very helpful and supportive in prescribing antidepressants & drugs for the blood pressure. 

July 2013. An appointment with a spinal surgeon at the Conquest Hospital. X-rays & exam. I consent to a spinal probe to establish disc damage. Further fixation surgery is mentioned. I expressed to the surgeon my fear of more spinal surgery as the surgery I had in 2000 seemed to have caused the permanent sciatica (in my ‘good’ leg). We agree to discuss this again after the probe.

As I write it is September 2013. No sign of an appointment for the probe. My mental health is deteriorating. I fear any surgery, even the probe. The pain is manageable with the assortment of pain killers I now have providing I do not do very much. And I do not do very much these days. I have watched, read & listened to the media destroying the reputation & integrity of the NHS. And I wonder if I will ever volunteer for any kind of surgical procedure. 

My business has collapsed. I am not fit for work according to the Job Centre. And despite the DWP saying I should be in the Work Related Activity Group, I have not had one invite for a consultation to discuss possible work options.

I conclude now that my stoic attitude to my pain is perhaps my undoing. In 1979 at age 18 I suffered major multiple open fractures to my right leg. Breaks to the knee, severed artery & muscle & badly dislocated ankle. This is like major surgery on the roadside without anaesthetic, fully conscious throughout. There followed months on traction, bone grafting surgery etc, etc. Only someone like myself who has experienced this could understand any of the above. 

I say this because my attitude in life since has been to soldier on. There are folk much worse off. Keep working & because of that experience of pain, my 1 – 10 pain scale sees ’10’ as that on the road, bones, flesh, protruding. That level of pain. 

But in August 2012 I tried to stop grinning and bearing it and ask for help. Both of the medical profession & the DWP. 

My GP has been fantastic & possibly saved my life. 

The DWP have been an incompetent nightmare and sole cause of my anxiety, stress and inevitable depression. The NHS specialists have been very good but I suspect they are frustrated by politics. And Virgin Care who have I bet presented their invoice!

I have tried to keep this brief. I cannot articulate face-to-face or via telephone my thoughts above unfortunately. I needed to get this off of my chest and out of my mind which is increasingly fragile. 

Thank you for reading.

Mr Baffled Ape

The text in italics above is a copy of a letter i wrote to my GP, MP, DWP, Tribunal Service

So, my lovely GP called me on the telephone to see if I was OK and promised to chase up my Spinal Probe surgery. My GP also explained the directive doctors have now to refer people via Virgin Care who then when they see a difficult (non profit I suspect) case refer you back to the NHS. Before Virgin Care the GP would refer you directly to the specialist. Great work Cameron & Hunt!

I received a reply from my MP the Conservative Greg Barker, who said he’d passed it onto his colleague Mr Iain Duncan Smith. I was almost overjoyed with excitement at the prospect of such a letter ¡¡ (inverted exclamation = universal sign for sarcasm)

Meanwhile a 2nd ATOS Work Capability Assessment appointment arrived, despite many phone calls to the Newcastle DWP office explaining  & reminding them of the pending appeal, I was told that I must attend or, you guessed, get sanctioned and lose my ESA award.

So, at this stage I was now 15 months on from asking the DWP for help. Despite paying income tax and having paid in the maximum contributions to National Insurance since starting work in 1976, I am having to fight every step to receive the ‘Social Security’ I am, according to the system entitled to!

End of Part 1 

Part 2 coming soon. The Tribunal, more surgeons etc.

Published on

9/22/14 10:45 AM

Irrational Fears: Meditation And Fear of MRI Scans …

From the archives [ Originally published September 9th 2014 ] Please bear with me as I migrate these old posts from the now defunct Google Blogger

So, recently I had an MRI Scan on my lumbar spine. This is my 3rd such scan and I have an irrational fear of the things!

For anyone who doesn’t know, an MRI scanner is a machine where the patient lies within the noisy Magnetic Resonance Imaging (MRI), the diagnostic imaging device that uses huge magnets that whirl around a person’s body as they lay within the machine. The MRI offers a precise image of any part or internal organ, tissues & skeleton. But it is recognised that it is an ordeal for many people, some of whom panic at being trapped inside the monstrous machine. It is precisely that ‘Panic’ which is my own fear, and I do feel this to be irrational and quite frankly embarrassing. 

The confined ‘Tube of Horror’ or Not

My first scan was in 2000, Blackheath, London at a private hospital. I didn’t like that one at all. MRI scans are not painful, there is no physical discomfort at all. It is all psychological. You are placed onto a narrow bed which is at the opening to the entrance of a tube. To me it resembles the torpedo tube of those old WWII submarine films where the torpedo is loaded onto ‘a bed’ at the opening of a long tube!

So you lie down with your head closest to the tube opening, your head is supported in a ‘U’ shaped block and from that moment you cannot move your head from side-to-side. Today I was handed soft ear plugs to place in each ear, I have previously been handed headphone type ear defenders. You are also handed a button to hold in one hand in case of emergency, however what that emergency might be I was not advised, though i strongly suspect ‘claustrophobic panic’ is the most common!

The narrow bed is then mechanically raised to align with the torpedo tube opening. On this most recent MRI I was asked to close my eyes while I was ‘positioned’. Now, this was good advice, and on my previous two spinal MRI scans I was not given this advice. Because you see (this is where the ‘irrational fear’ part comes in). When you are being ‘positioned’ you are being mechanically slid into the tube. In the case of my 3 lumbar spine MRI’s all the way in! I guess for other parts of the body maybe you don’t go so far inside the tube.

Maybe? But I digress, it is this moving into the tube and seeing your available space disappear which is in my case the most difficult to deal with. Despite having my hands across my chest & flat down I felt my elbows being pushed even closer to my sides by the walls of the tube. As I opened my eyes the top of the tube was less than a wedding fingers distance from my nose. It is not dark but dim. It was cool but started to get warm. There was a noticeable jet of cool air felt on the way in but now that was absent. 

OK, so on MRI #1 in 2000 I didn’t panic but didn’t like the feeling of claustrophobia at all. 

On MRI #2 in 2013 at this stage in the proceedings I wanted to scream like a little girl and say “get me out of here”! I’d never been so close to a full on screaming panic attack! So, why the fuss? It’s just lying in a small dim tube having been mechanically inserted on a narrow bed. What’s not to like? 

Well, I’m probably your classic ‘Over-thinker’. I am also an engineer and put those together and you get a torrent of imagined but maybe possible things that might go wrong. Being an engineer and a realist the first thing that comes to mind is a power cut. Now there might be some amazing back up system so efficient that I wouldn’t even know anything had gone wrong. But if not then in my imagined over thought scenario everything would go dark. The fresh air that I believe is being pumped into the tube would stop. Any cooling of the huge magnet in which I am now lying might fail, so it would get hotter. Does the bed on which I am lying have a manual override? Can it be pulled out by hand by the scanner people just outside or is it dependent upon machinery & geared to a now useless & immovable motor somewhere? How could I get out? There is absolutely no room to use my arms, hands legs to try and propel myself out, especially if the mechanical bed is jammed by its gearing. 

So that little scenario above is what nearly got the better of me last time. Also of course, there is the little matter of this amazing machine finding something really awful growing inside me that is the real cause of the pain! 

This time I was determined to ‘Man Up’ and just deal with it! And I did. Thankfully, and I think it was down to Meditation. One thing I have been reading up on since MRI #2 and this latest one is meditation. I’ve dabbled with the subject before having used it myself, by accident in 2000, after major spinal surgery. I say accident because at that point I had no idea what meditation was, but in awful pain despite being at my maximum dose of pumped intravenous morphine, I needed to find another way of coping. And i did, somehow, and i now believe i used a form of meditation as a coping mechanism, which thankfully worked. That is another whole story that I may well elaborate on at some time.

Anyway, having read a little on meditation since then, it was my intention this time, during MRI #3 to attempt to remove myself from the actual experience and take myself somewhere else, somewhere more pleasant, natural and preferable. It worked for me. Despite being in that confined, dim, hot and very noisy small space for 45 minutes or so it was no ordeal at all. My body was there but my mind was with my family, my kids particularly, seeing their faces & smiles, hearing their laughter and feeling their hugs. It was surprisingly easy to do. I intend to develop my meditation skills further, I am no expert but what I do know and what I have achieved so far is thanks to a book by Matthieu Ricard, it’s called ‘Happiness , a guide to developing life’s most important skill‘. And I go back to it often, it is always to hand. There are exercises in meditation, it is great, I think.

So, despite the noise, the keeping still for ages, the claustrophobia, I was simply not there, in fact when the loud hammer like banging stopped for the last time I was almost disappointed at the jerk as the electric bed started to remove me from the ‘tube’. I was in such a nice place. I have also used this when dealing with Chronic Pain, and I continue to work on that.

Part of my meditation during MRI #3 was just to marvel at the wonderful engineering and technology which was mapping my spine with pinpoint accuracy, a truly amazing machine that science has given us and our children if ever they should need it.

Thank you for reading

Originally Published on

9/13/14 11:23 AM

About those posts from the archive …

So, I had this old Google Blogger account and I started posting stuff on there in about 2013 as a way of expanding on Twitter posts.

“I wanted to somehow keep the old posts that going by the feedback seemed to help others”

Around about that time I was struggling with the long term effects of injuries sustained in a motorcycle accident in 1979. I was also acutely aware of how the UK’s coalition government (elected in 2010) were hacking away the support that many thousands of disabled people depended upon just to live a basic, meagre and frugal existence.

Having been officially declared ‘disabled’ in 1979, I felt great empathy for those much worse than me who the Tory/LibDem government were hounding, removing vital social security, and worst of all vilifying as a “Look at those scroungers” political distraction, aided by sensational headlines perpetrated by their friends in the right wing press.

Anyway, my twitter account (Also BaffledApe) became very political, and a place to rally support and highlight the outrageous attack on some of the most vulnerable people in society by the Cameron/Duncan-Smith government and their “Yellow Tory” LibDem enablers.

I found that with around 1,300 followers, some of my posts particularly the personal ones about Chronic Pain, PTSD and the long term mental health issues related to major injury, had quite a reach and the positive feedback more than justified my ‘baring all’ as a form of personal therapy.

However, the twitter account is no more. Deleted in 2020 in despair at what twitter had become! Google tell me they will be taking their ‘Blogger’ platform down at some point, so I have been resurfacing here. I wanted to somehow keep the old posts that going by the feedback seemed to help others, and that is why they are appearing here.

Update: February 2021 – I’ve dipped my toe back into Twitter, how long for, we shall have to see.

If you made it this far, thanks for reading.

In this group of archive posts;

Added 26th May 2021 – 5 Years! RIP Dad – A Truly Great Father

In A Split Second

Irrational Fears: Meditation And Fear of MRI Scans …

How I learned to love my Chronic Pain

Conscious Throughout

Physical Recovery – The First Three Days

How I learned to love my Chronic Pain …

From the archives [ Originally published November 9th 2014 ] Please bear with me as I migrate these old posts from the now defunct Google Blogger

… Well, not the pain, but the diagnosis at least. 

Last August marked the 35th anniversary of my not being able to take a single step without feeling pain. Due to a simple mistake while making an everyday driving manoeuvre I found myself fighting for my life and forever more disabled. 

As a young man with what I later found to be a very unhelpfully stoic attitude, I forged ahead in denial of my physical limitations and eaten away with the frustration of those limits and angry inside with the ever present pain. As I now know, being in denial of constant pain is a very bad reality to deal with. From day one I accepted responsibility for my mistake and to this day I may or may not have been in the wrong. That does not matter now of course, but what did matter was my own harsh judgement of myself. By feeling responsible for the accident I was also responsible for the resulting injury, pain & disability. 

So I put the lot to one side and got on with life after a 12 month diversion of hospitalisation, treatment, surgery & learning to walk again. Stupidly, I got back onto the path I’d been on prior to the accident, same job (I was 3 years into a 5 year apprenticeship) not stopping to consider whether I was still able to do such work, I soldiered on, stoically like a fool, chastising myself each time I couldn’t do what I could before. My punishment to myself was simply – you did it, your mistake, shut up and get on with it! And I did for years all the while seething inside & stubborn. 

When you seriously damage a major part of your skeleton it has knock on effects on other parts of your skeleton. So as the years passed more pain occurred in different places, then more surgery which in turn caused other knock on Neuropathic pain. Then fairly recently the term ‘Chronic Pain’ was being used by the various medical professionals. I had reluctantly returned to, to seek help as my everyday work & life became impossible. So after 18 months of new tests, scans and a ‘Spinal Probe’, nerve function, blood flow tests, the various specialists, surgeons & my GP were turning to me to look me in the eye and say ‘ I cant do anything surgical for you as the risk is too high, what we are looking at is managing your Chronic Pain’. This funnily enough came as a sort of relief. I felt that I had tried, was motivated and persistent in the previous 18 months on seeking specialist advice in the hope that there may be new modern surgical techniques that might help with the pain, enable me to work more and interact physically more with my young family. But, three surgeons and my GP later it is a case of managing chronic pain. 

I of course started to research chronic pain and to my surprise there is a lot of info around, This Article made lots of sense to me, I had heard the term ‘Spoonie’, seen people describe themselves that way on their Twitter bio’s, and although I would not put myself in the category of some who describe themselves as ‘spoonies’ I can certainly relate to the ‘Spoon Theory’ You are able to get a certain amount done in a day, that amount varies and once your supply of spoons is exhausted you are done! That can be difficult for others to understand, including close friends and family, even your partner. This diagram is a useful aid to describing the juggling of feelings and emotions. I’ve posted it many times on twitter and entered into some valuable exchanges of information with fellow sufferers.

Chronic pain is hard to live with but for me at least it’s not life threatening, and for that I’m thankful, but the anger, resentment, bitterness & resentment has gone. I feel happier than I have for years. I no longer blame myself. In fact, I am proud of my past achievements despite the ever present pain, but now I actually live within my physical means, I’m comfortable with using sticks & orthopedic splints in public, 

My beautiful daughter & ‘Carer’ Lulu 

I used to be embarrassed at having to explain when people would ask ‘oh, what have you done?’ but now it’s simple I just reply ‘it’s a long story, I have problems with chronic pain’. Tends to shut most people up and if they are genuinely interested I will explain. Of course there is a vicious circle related to the drugs prescribed to treat chronic pain. That alone could be a whole other subject for discussion! (Watch This Space)

So why am I writing this? Well I hope it may strike a chord with people suffering with or living with someone who is dealing with chronic pain. Acceptance – was the key word for me, a trigger if you like. I accepted the fact that i cannot work as i did before, money is a big problem but in the scheme of things money is absolutely nothing but numbers to me. So Acceptance is the key i believe, for the Chronic Pain sufferer and those close to them. Speak, tell your partner & family why you are grumpy, tired & going to bed early. I personally can only get relief by lying flat. So I do now, whenever I have to, even if it is for 15 – 30 minutes, it helps generate a few more ‘spoons’.

Acceptance is the key. You suffer from Chronic Pain, some will never understand, including doctors, but then many have never (& hopefully will never) have experienced the ‘Split Second‘ that earned you membership to an exclusive club of survivors with incredibly horrible memories.    

Originally Published on

9/11/14 11:53 AM