Constant Chronic Pain

My name is Heidi Wallen, I’m a single 43yr old residing in Plymouth, Devon UK. I would like to share my story, for many reasons, but more so in hope, that someone, somewhere may help me and the constant, excruciating and very debilitating lower back pain that I experience, every minute of every day, and have done now for over a decade. It changes you, I’ve been at the depths of despair countless times, and hand on heart, if my time were up, I wouldn’t be writing this today, fact. I have to pre warn that this story is not for the faint hearted, it’s sad, pitiful and quite frankly unbelievable, but it is all true. I have been shut inside my flat, suffering in silence for far too long. I have a huge amount of loss of sensation in my lower regions, bowel, bladder and other, as in sexual. I have Fibromyalgia, asthma and a few other health issues, including borderline personality syndrome, or so I’ve been told.

At the age of 31, I was single, in full time employment and on a very successful career path. I had survived my traumatic childhood, and being in the care system from age 13. I had a great network of close friends, social and active. I was looking forward to finding that special someone, starting a family, whilst progressing in my career. Then it changed, forever.

In 2010, with what started out as sciatica pain on my right side, lead to seven lower back operations from Jan 2012 to Sept 2014, by four different surgeon in two separate hospitals. In hindsight, I should never have had the first, but it was necessary if I wanted to regain the numbness in my entire right leg and foot. My job involved driving, so I agreed with the consultant that surgery was my only and best option.

Three weeks prior to surgery, and sciatica pain radiating down my right leg and foot where I couldn’t walk without crutches, sleep nor stand, my entire right leg and foot went numb. For the first time in 18 months I was pain free, but this was not to last.

From waking up following the first operation on 26th Jan 2012, I have been suffering constant, excruciating lower back pain, which with each and every operation that followed, only exasperated this further. Following the last operation on 19th Sept 2014, my pain can only be described as torture, it literally feels like there is an axe in the base of my spine, constantly. This is whilst being on a huge amount of varying medications, Oxycodone, OxyNorm, Pregabalin, Diazipam, Diclofenac, and Zopiclone to name a few, but it is approximately 30 tablets a day. I’m aware that this is reducing my life expectedly, but it does stop me from laying out in the road and waiting for the next bus to come down and hopefully over my back. This sounds crazy, or stupid, or just words without meaning, but mine are not.

I spent the following four and a half years, being battered between Pain Management and Mental health, the root cause being the level of pain I experience but no one would listen. No one would help, pain management would tell me there was nothing they could do, and mental health would say it was a pain issue. My doctor told me that my physical pain was related to my traumatic childhood and refused to help. I made numerous complaints regarding the total lack of help and support available to me, within multiple health departments, yet still no one would listen, let alone actually helping. I complained some more, changed doctor and practice, but still no one would listen. It took multiple rejections, consultants who had made up their minds over any possible treatment, before I entered the room. My bitter truth was that no one, no where would help, I was alone, very alone, and in pain, a lot of pain.

There was a four week pain management programme offered in either 2015 or early 2016, my apologies, I can’t find the diary I do have somewhere. It was held in Bath. During the assessment for this I was asked what I thought the course entailed, I replied with the following, and I quote ‘it is a course combining both the physical and mental health, to help those be able to live a life of chronic pain’, the assessor replied with, and I quote, ‘I couldn’t of worded that any better’. I understood that this was not a cure for the pain, but that it would provide tools to do so, both physically and mentally. It soon became clear that this was nothing like what I was lead to believe, and eight other course members agreed. In summary, mentally they just got us to list the emotions associated with chronic pain, mine was rage. With the list complete, I asked how we manage these emotions only to be told it would be covered in another session, they never did. The physical aspect was quite frankly, gruelling. Multiple gym sessions would take place, and you had to participate, it was solely based on moving, exercising, and pushing further and further each visit. I would be in tears, others would be too. I wouldn’t recommend anyone go there, especially if your chronic pain is permanent. The report that was sent to my gp, Dr Boorer, is extremely damning against me, saying I didn’t participate, that I didn’t engage with them. It’s the opposite of what actually happened, and only the other group members on the course at the time, would express what they witnessed. It wouldn’t be the physiatrists view. It was at the last meeting with Dr Nicola Chandler, where gave feed back, on the course, and my view, that they didn’t cover anywhere near enough mentally, they could and should be talking about the loss, grief, anger, sadness etc in depth, they matter very much. I explained this to her, I thought I was giving feedback, welcomed feed back. I know I could design a course that would be worlds apart from what is currently out there, especially in the Westcountry region, but this was also part of my profession, designing and delivering training. I have kept the diary I used, it notes all that went on, during each day of the course. By the end, I was worse both physically and mentally. This was my only hope of being able to cope, cope with living in constant excruciating pain, the grief you go through as you mourn the person you once were, and the things you were once able to do, just this is massive to any chronic pain sufferer, not to mention all of the other emotions and processes you, the sufferer will experience. I know and would very much like to change this, I’ve no idea how.

My last overdose was followed by three days in ICU, I had finally discovered that the exact cocktail of medications I need to fully end my life, I have tried several, at least 9 previous times. This has since been the scariest information I know, because deep down, do I really want to end my life, no, not really. I want to be a sister, an auntie, but most of all, I want to help others. The sad reality is, at present I am merely existing, and every day is a battle. I’ve tried other drastic measures, stuck knives and scissors in the base of my back, in hope of cutting whatever nerve, spinal cord that would numb all lower feeling. This sounds drastic, but I can assure you, that even the most sane of persons would struggle a huge amount of emotions, and whether you have chronic pain in your baby finger, toe, anywhere, anywhere where the pain is a constant. The bitter truth is that no medical professional, who would and could help don’t, especially if your more aware of your health issues than them, and as much as mental health is talked about today, when you are in the system and you know what day of the week it is, you have no hope of help, at all. Another part of my job, throughout my career was excellent communication skills, and this was no exception when dealing with health professionals. An example of the many experiences I have is being asked why, why did you attempt suicide? I would happily oblige, the root cause was pain, chronic and excruciating, and still is the root cause, but no one, no one at all would ever address this, not once nor ever.

Amongst the numerous surgeries I was assigned a new doctor, GP Dr James Boorer, whom was new to the practice to replace my good doctor, as he was assigned to a different practice for patient visits. From day 1, his view was that my pain was associated to my traumatic childhood and certainly expressed this, he also refused to help in any way, in fact the opposite occurred. I mention this as I know others must be experiencing the same with either their or my GP, and more so because in order for change, and change that will actually happen must start somewhere. I want to be that somewhere. Following operation number 7, the only operation that took place at the RDE hospital in Exeter, where a 360 degree fusion was done at L5/S1, I knew that however much have pain I was in, was how I would be left if I was discharged. I was insistent on seeing if anything further could be done by the pain management team there. Suddenly, there he was, a Dr Graham Simpson, who was willing, actually willing to explore option’s, the very first and only health professional who was wanting and willing to help. I’m sure he has no idea that this was his impact, but it so was. He tried something, it didn’t work, but he assured me he had other options yet to explore. For the first time in years I had hope, but this was short lived. After a 2 week stay I was discharged, and was told by the surgeon, Dr Colin Sutton that I would be seeing Graham again as an outpatient Following a 3 month wait. I was more than happy with this, but it never happened. Four months later, I’ve heard nothing, so I call to see how much longer I needed to wait. I was taking a vast majority of varying medications, and was still. I was still in as much pain as I was the day I left the hospital, which coupled with pain is still as it was and is today. I was told that I hadn’t been referred by the surgeon. I contacted the surgeons secretary, who assured me this would be done, but another 3 month wait. Again I waited 4 months, it’s a repeat, I did the same, waited a further 4 months, and still this didn’t happen. Twelve months following the final operation Dr Sutton reviewed, to ensure the fusion had been successful, and it was, it surely didn’t feel this way. Credit where it’s due, he did finally make the referral following this consultation, and four months later I received a letter. It said that because the time frame was too great in between, therefore I would have to go back to pain management in Plymouth, any and all my hope vanished in that one read, I had no access to that one person, the health professional who was willing and wanting to actually help, gone, forever. Dr Boorer blatantly wanted to refer me to local pain management and simply refused to refer me to Exeter, back to Dr Simpson. He halved my thyroid medication by 100mg, a huge drop, depiste my request to try a 50mg reduction, but again he didn’t listen. This matters because I went from a size 8 to 10 to today size 18 in a matter of months, which I remain at today. I made a complaint to the practice manager, who passed it to Dr Boorer to respond directy back to me. Words couldn’t describe the disbelief, surely this should have been done by a third party, looking at both aspects, and the practice manager or someone, anyone else but the Dr in question should of replied to me, or so you’d expect. I changed GP practices, only to be ushered out of the room admist conversation, as now I have more than one issue, pain and mental health issues. They only address one, and even then, I was not able to receive any help. Again, no one would listen, let alone actually help. I was in no doubt that this was my new reality, literally soul destroying is a gross understatement.

In early 2010, or thereabouts, following all I’ve mentioned, I had to take myself out of the table tennis loop, for my life, my sanity, I couldn’t continue being rejected, being told personal views, everyone completely ignoring the root cause, constant chronic pain. No one would listen, no one would help, no one that mattered cared enough, no one who could of helped me did. Slowly but surely, the fun, active, loving, caring, intelligent person I was once had vanished, coupled with any hope of a life past a mere existence.

And this is why I’m writing this now, I’m at the point where I’m all out of cope. My life on Facebook slowly became non existent, the truth is people, those I had as friends, and I don’t add anyone I don’t know, they would criticise for being negative, even though I’d intentionally add humour to make it more people pleasing, the truth again, no one is interested in how poor your life is, only when it’s good.

People don’t want to hear about my disabled, wheelchair bound life, and yet the many who suffer in silence is judged why. Only once the root cause is identified, analysed and addressed, can change, can make the difference between being able to cope, being able to talk, the chance to live and move forward.

I’ve been unsuccessful in trying to get help from charities or support groups, there are no support groups or all whom experience any form of chronic pain. Even Adult Social care do not cater for disabled people without learning difficulties. I honestly have no idea who to turn too at this time, hence my story. There is so much more to this, I had to wait 4 years for home improvements to be done, and I would welcome you round to see the appalling job they did, it’s another story of it’s own, there are so many tales I have to tell, all sad and unbelievable. When I hang in the hoist in the bathroom, I’m pain free, fact. I would spend my days in there if it were viable, but it isn’t. The grant is designed so that your quality of life, now shut inside my flat, is improved, they failed here. I have a front a d back garden but no access.

I’ve lost a very close male friend, as he took his own life, I’ve lost a very close friend who died aged 28, and most recently my darling younger sister, by murder. But I also have other siblings, nieces, and great nephew, and a very close friend I’m in contact with, and one other. I have amazing carers who are literally a true credit to the profession, but they are paid poorly for the job role. I like more than ever, a chance to help others, in which ever way I can. I know I can make a difference, just if and how much depends on you, the reader of this, whomever you are, wherever you are, I please ask, help me. The first must be the amount of pain I am in 24/7. Help me make a difference in the existing mental health processes. I’ve been quiet for too long, and now I want to talk. I’d campaign, do charity events, anything I could, to be able to help others. I’m still breathing, I just need to find myself from here.

I’m doing things different, I’ve called my siblings and friend, I’ve contact someone somewhere about my current mental health state, I’ve called ASC, I’m about to get back on the table tennis top. I really, really hope that this experience is vastly different, after all, the

Today is Wednesday 17th March 2021, the mental health person I spoke to this morning got back to me, firstly he wasn’t sure who to go to, pain management or mental health, and how reports show that I tend not to engage. I really do hope that Nicola Chandler, based in NHS Bath, was aware of the damming ramifications of that very report she wrote. Everyone who has read this, Dr Boorer included, and have all used against me, the sad reality is that it is because I gave some harsh but constructive criticism regarding the course itself. Now I ask how many others have been there and experienced the same, let’s see.

You can follow my journey as it unfolds is on Facebook page Projectheidi2021

Today is the 23rd April 2021, so much has happened and all for the better. I've had to help myself with the help of family and close friends. I've emotionally detached myself from my pain, it's still very much present I'm just choosing to focus on other things. Mainly rediscovering my self, my psyche, who I really am and my purpose.

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projectheidi2021

projectheidi2021 #thisisme #constantpain #Speaker #fightingback #lovedonescanhelp #kindnesstoself #gottalaugh #failingsystems #suicideprevention