My Story…

A few months of making no headway after aggravating my groin doing a seated leg-press at the gym, I decided to see a hip specialist who assured me that time was a healer. I was training for the Royal Navy at this point and while the pain was there, it didn’t prevent me from doing regular 10km runs to keep my fitness levels up to the required standard – my hip specialist also assured me this would cause no further damage. After one of my runs I began to notice a sharp stabbing pain in my right hip joint that wouldn’t pass. Over the next few weeks the pain got increasingly worse and I had to stop all fitness, putting my career on hold.

An MRI/Arthogram later showed a bone impingement and labral tear in my joint resulting in the need for a Hip Arthroscopy (key-hole surgery) with an approximate 4-6 week recovery period. With this procedure they shaved down some of the extra bone growth around my hip joint which had caused the cartilage in my joint to tear and they also repaired the torn cartilage. – I had this operation in the summer of 2009 and have been worse ever since. Prior to this I was able to work full time and lead a relatively normal life with bearable pain…

After the operation I was referred to a physiotherapist to help with my recovery. As the weeks past I wasn’t making any progress and eventually, after 8 months with my physio, he said there wasn’t anything else he could do for me. Over time, I tried many different treatments from acupuncture, hypnotherapy, more physiotherapists, hydrotherapy and an osteopath, all to no avail, then, in the summer of 2011 I started doing studio Pilates. After 3 sessions I began to notice an improvement, my limp had almost disappeared and I could see my body starting to re-align, I don’t think I’d ever been happier. I got a new job as a support worker (the navy was completely out of the question at this point – they wouldn’t accept me now given my medical history) but it was too much . As the day went on I muddled through the pain but it spread all around my lower back and down both of my legs. I could tell it was serious – the sheer area of my symptoms when initially it was just my hip left me worried sick and increasingly concerned. I persisted with the studio Pilates but I couldn’t continue. The pain worsened and while before I could easily plough through an hours session – 10 minutes worth left me bed-ridden and in total agony…

I became depressed, I was suicidal and it came to a point around February 2012 I just couldn’t go on. The isolation, lack of understanding, the stigma towards chronic pain & depression to name but a few all became too much. I slit my wrists and took as many pills I could. I didn’t want to die l but I didn’t want to live the pain either. I was low and completely broken. I was referred to see a psychologist at the chronic pain team, but it didn’t help. My pain was getting worse – I would find that I could adapt to a way of living, being able to manage my pain to a certain extent then boom, an increase in symptoms and an increase in muscle waste – I could see my body deteriorating before my eyes. I was an emotional and physical mess. I did however, promise myself I would never let the depression get a hold of me like that again…

For the last 3 years I have been completely house-bound, I’m 30 years old who was once so very active, yet now I struggle with the most simple of tasks. I was diagnosed with Complex Regional Pain Syndrome (CRPS) and had another unsuccessful Hip Arthroscopy in August 2014. The deterioration continues to get worse and I fear for the future. I have my ‘good’ days but they are rare and are quickly followed by the bad. I have a great support system around me with my immediate family (I’m not sure I would be here if it wasn’t for them) but I find the lack of being able to relate to others in a similar situation to me really hard to deal with and the isolation is soul-destroying.

Unfortunately, for illnesses such as CRPS there isn’t much public funding going into research to help find a cure – or at least to find ways to live without being in such constant, debilitating pain. In the UK, even the pain clinics aren’t worth their name – not from my experience anyway; they are far too basic compared to developments elsewhere in the world in managing pain – they think just to sit you in front of a psychologist for umpteen sessions in a row will suffice! More needs to be done physically and I’m hoping to have better joy second time round, without the patronisation of someone with an MD in front of their name, subtly trying to claim ‘it’s in your head…’

Currently I’m waiting to see if I can get a specialised wheelchair to allow me to go outside – I’m unable to sit at a 90 degree angle and have to slouch back when I sit so a regular chair isn’t any good for me – I’m extremely limited with my mobility and if there is a chair to allow me into the outdoors I can’t sit or stand for very long as the pain won’t allow it so I can’t venture far – it’s so fucking controlling and seems to win every battle, and, seemingly the war. I’m dreading how my body will be in the years to come…

My current symptoms are burning in both of my glutes going down both of my legs, along with sharp stabbing pains – the circulation has got so bad that one leg is darker than the other and my legs are permanently freezing. I get back ache and tingling down the right side of my face – pins and needles are a regular occurrence and I’m unable to pick anything up below waste height…

I find an escape through my writing  on this rocky road – where I’m forever getting worse physically no matter what techniques I try to help myself. I can’t remember the last time I left my flat for pleasure and I have become the king at pushing people away – I fear they’ll leave anyway so I do it for them – I can now count my friends on one hand. And as for my crutches – they are my enemy yet they strive so much to help..

Anyway, this blog, this is my sanctuary, a place to find peace and solitude between the ever familiar four walls. It’s a place to ponder the reasons for our existence, and, through no choice of my own – avoid all conflict beyond the stagnant concrete… It’s here I put my pen to paper and scribble down sentences that have no meaning to anybody other than myself… And this place I mention – this will be my fixed abode for quite some time – this and a pile of clothes in the corner of the bedroom floor… But, despite everything unwanted, I am still a spiritual seeker, I am still a breather & I’ll always be 99.9% empty space. I’m house-bound with chronic pain finding ways to fill my time & writing is one of them…

And it’s here I continue to conserve my energy with great frustration, as I experiment with error being the general outcome, I pray to a god I’m not sure whether to believe in… For my destiny is made by me, only me… I will write and create, express myself and be free to show all of the world my fate and on that shelf will be a bind with my name on it…