So today, my thoughts are going back to when everything was oh so dark and in despair and I felt like I could not keep going. WHY – Because I want you reading this to know that you are not alone in your journey with chronic pain and debilitating invisible illnesses.
You see, when you are chronically ill, apart from the everyday pain and illness you most probably will suffer from forms of depression, loss, loneliness and perhaps even thoughts of suicide, but you will rarely discuss these because you think you will be judged as weak. I want to speak to you, openly about the fact that these topics are ones that you don’t want to dismiss or ignore and I am speaking from personal experience.
By speaking of my own journey, honestly and vulnerably , I hope that I may help you feel more comfortable about talking about your struggles with living with chronic illness everyday. I want to show you that by choosing to ignore these dark moments, only can make the problems that you are dealing with even bigger, scarier AND lonelier. Being honest opens up doors to your inner most private struggles and lets other people in to help.
So let me explain a little bit of my experience. Obviously my physical health was caused by multiple chronic illnesses of autoimmune & neurological breakdowns but I also started to notice a mental deterioration clearly by middle of 2015. I put it down to extra tiredness due to opening up my own business as a life coach and yoga teacher with my own studio. I know that my chronic illnesses are part of me and this business was my way of opening the journey up to the greater world. I wanted this so much, so I just told myself to keep pushing through the daily processes of life.
Let me stop right here, now and explain that my living in silence with my pain and illness is an oh so clear example of how this modern world makes surviving chronic illness and is without a doubt, one of the hardest hurdles to overcome.
Going back to the beginning……my health began to decline and initially , I approached it as though I had a bad flu. But that flu, never went away so off to the doctors, I wen to find the problem, so again I could be well. Right – oh no, not so! As months went on and one year turned into multiple years my pain and suffering weren’t getting better , in fact, they were worsening. I tried all the mainstream medical philosophies, I stepped into alternative therapies , which may I say allowed me to find a path through for a while but as life was seemingly moving, my thought process began to divert from those who surrounded me. I kept going to the doctor, many doctors actually and many times, over and over but that is where my original plan failed. The pain was from nerve damage, but that was where the understanding of my situation stopped. My body kept adding more and more symptoms and the doctors seemed to have less understanding and compassion of my daily life . Particular autoimmune illnesses were diagnosed but confusion regarding what was impacting my health increased as did my pain and with each failed attempt at managing the pain or finding a diagnosis, my life was falling through and into deeper levels of darkness .
I can tell you that as this journey of mine wandered further, I felt a thick disconnect from everything. Everyday became a blur and what was once important no longer seemed real. I knew I was a part of the living world and I knew I had this passion and purpose but from 2015 it felt more like I was watching it from a million years away than from reality. This life – my life it seemed so, so far away. I began to wonder if I would ever live that life that was so vividly clear in my visions and dreams. I had once planned to make world wide impact but my days consisted of lying in bed using my electric blanket and medication or anything and everything I could think of to lessen the pain. There would be days where I would sit up but I would still be taking high doses of pain medication and my trusty heated throw rug or sitting outside in 40 degree days just to feel well. That is NOT life. The thoughts of being well and free of these debilitating chronic illnesses were not even near being real and in that state, I just wanted to decrease my breath into a life of living – YES, I wanted to die! I wanted relief, I wanted wellness , even just a minute. That obviously wasn’t to be, so thoughts of dying came more readily like we breathe our most magical visions and dreams had for so long. The only thing was I thought was to go to sleep permanently- you see being in chronic pain and illness makes you so tired , so you sleep but then you wake up. Even the short bursts of sleep I was getting, only gave me short term relief, but my body’s pain and suffering continued. So fast track to late 2015, early 2016 and I was done with this pain and these illnesses- some known about , others even doctors were left flabbergasted! SUICIDE was going to be my release from this world that became all too hard. I was angry, I was hurting and no one could help me. I was in a very dark place that I could not get out of ! So I entered hospital early 2016 with pneumonia, which I believe spiralled me further into despair. I soon was discharged, with the doctors giving me the same scripted announcement- “you will need to rest , so that you can best recover because of all your other health complexities”. I was stuck in self destruct mode with such thoughts as “they’ll be sorry,” or “I’ll show them.” My pain and illness were my permanent and realistic nightmare everyday. My physical and mental health could not survive another spectrum of life with this level of suffering, death would be a relief, it would be an end to this awful pain and it would take me as the burden away from those closest to me. The only problem was my loved ones, as much as I wanted to leave the reality of death I didn’t want to leave them. I tried making my husband and children realise that by killing myself it would be kindness . I so much wanted them to understand this agony, that I was living, so that I could find relief. At this point, I was only alive because of the people I loved, but then they left me the internal distress was at breaking point.
Come to March 2016, I was taking massive amounts of strong pain medication but just couldn’t get relief, so I went back to hospital. I was in a bad state, confused , in pain, in anguish , constantly falling over and even, hospital where I thought that these people would understand me and help me were not! I resented myself, everybody and everything – Noone really had any clue how much pain I was suffering . In that instance , I did something – I tried to kill myself. I tried to escape the hospital ward and take myself to the busy road outside and be hit by a truck. Obviously, it failed – I fell outside of the lift – but it brought me to the NOW to finding help that was there, being open to accept it.
Being alive and living are two different things which I had forgotten after falling victim to my own health complexities, I got lost in the mist of extreme darkness and depression because, I was afraid to accept help. I thought if I accepted help, that I would be showing an even greater sign of weakness. How incorrect the thoughts (my thoughts) are when mental health disintegrates. Accepting help and building a team of health and personal support is the biggest mental and physical gain that I have given to myself. I now, know that all life needs when in these most anxious moments of life, is honest conversations regarding an understanding and compassion. I am grateful, for my new doctor whilst in hospital as it was, he who made me realise that coming to hospital and accepting admission was the best and only option for me. It was probably my most loneliest hospital stay but also the most important 3 weeks of my life. It gave me new set of medications, treatments and a resilience to get me through the days living with chronic illness because we walk inseparable through life.
To conclude my experience, I have learnt that at this time in the modern day world, depression and suicide are as much a part of chronic illness as all the other invisible symptoms. The problem is that this world, ignores or perhaps more correctly chooses to avoid the subject. This then leaves the chronically ill like myselff, alone to cope with the demons and darkness that nobody should have too live with. I believe if, i had of found that new doctor months and possibly years earlier, who sat with me and had the full non judgemental conversation, my journey may not have been so heavy and dark leaving me to progress like I am now.
As I am writing this , this conversation still terrifies me but I also know talking about it helps ideas and perspectives make more space within the brain for new opportunities that life may not yet have offered. Always remember to show kindness, compassion and understanding;to yourself because our inner most thoughts aren’t because of us, it’s because of the external journeys that we are living. I am now reteaching myself using mindfulness, journaling and talking about how to no longer hold on to my fear, my pain or my illnesses. For the remainder of my journey of life with chronic illness or not I want to feel alive . So by me being able to write and talk my experiences, I hope that this may help some of you and together we can begin to walk together and tear down the stigma of being vulnerable and out of reach of a life to be wandered towards wellness and wonderful experiences.
(AKA – The Barefoot Goddess) 💋
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