Beginning a lifetime of pain

I should start by introducing myself, my name is Jane Hinchliffe (aka crazyjane125) I am a disabled cannabis activist and sole proprietor of Sativa Dreamin’. My main confirmed diagnoses are Functional Neurological Disorder, Complex Regional Pain Syndrome, Autism, Complex PTSD and chronic anxiety & depression. How I got to this point is a very long story, which I will start with this first blog about how it all began…

 
(Me vaping cannabis flower in my local pub)

I was always a very active child, loved doing handstands and cartwheels and I was a very keen runner from a young age, I also enjoyed cycling and roller skating which I did regularly, I was also lucky enough to live just round the corner from the local sports centre with a swimming pool where I had my swimming lessons and was allowed to go with my friends during the holidays. So it became a particular blow when in 1991 at the age of 13, I stood up from my dad’s armchair, my left knee cracked and I started with ‘unexplained’ pain in my knee. My mum took me to the GP who gave me ibuprofen for inflammation, although whether or not there was any visible inflammation is anybody’s guess. This happened just before a school trip to Lourdes in France, yes, on pilgrimage to the Holy Land where people go to get healed 🙄 the irony didn’t escape the doctor either… This was my first experience of living with a disability and a pleasant one it was not! I spent the holiday on crutches struggling to keep up with everybody and therefore I was sometimes put in a wheelchair to keep up with every body else when we were travelling any distance. I felt very left out and even had the embarrassing situation of having my period while using a wheelchair in the pouring rain when my sanitary towel leaked all over my shorts. On my return home I was referred to physiotherapy and rheumatology and told to stop running as it might be damaging my cartilage in my knees, but they never really came up with a definite diagnosis and my pain was first put down to growing pains, which they prescribed me very strong opiates for and then eventually rheumatoid arthritis for which I was put on more phamacuticals, this diagnosis turned out to be incorrect but by the age of 18/19 I was already prescribed strong anti inflammatories and tramadol in very high doses.

(Me in 2002)

The pills never took the pain away but they made me that floaty that I no longer cared about the pain. I tried to work but after leaving my office job working in systems administration for greenhouse work due to stress I then struggled to hold down a job because of the pain. The longest standing position I held was working in a pub, which I loved but I also started drinking daily because of it. One day when I was 19 I had quite a serious car accident when someone pulled out in front of me on the A63 a 70MPH duel carriageway, I hit him full on and as a result was squashed between the steering wheel and my chair on impact, this left me with whiplash and back pain. This was my first experience of using cannabis as pain relief when a friend suggested I try it for my back, it did seem to help me with the pain but the main thing I noticed was that I slowly went off alcohol and eventually stopped drinking pretty much altogether. Although eventually I stopped working due to pain again.

By the age of 26 I had met my husband and we moved area, this meant I was under a new rheumatologist, he examined me and declared that he couldn’t understand why the previous doctors couldn’t come up with a diagnosis when to him it was obvious that I had fibromyalgia, I was then prescribed even more medication, including amitriptaline and tablets to protect my stomach from all the other pills I was taking 🫣

(Me and my husband Darell around 2007)

Years went by in a pain and opiate based haze, then in 2013, one day, out of the blue and with very little in the way of symptoms, I developed meningitis and was rushed to hospital where I was put into an induced coma for 4 days while they waited for the swelling on my brain to come down. I spent 2 weeks in hospital recovering and was told I was very lucky and that they didn’t think I was going to survive with all my limbs intact! Unfortunately I did lose the hearing in my left ear. For the next year I also suffered with severe fatigue, I was also already prescribed Pregabalin which are well known for causing weight issues and because I was no longer active and also eating far too much junk food, I ended up putting a massive amount of weight on and I went from 9st to nearly 18st!! 😱

(This is me at my biggest after a gym session)

Throughout my life I had also suffered with substance misuse issues, probably because of my complex PTSD and also having been prescribed opiates from such a young age my main problem was with opiates. I had periods of abstinence through my life but because my husband also had a problem we both ended up using and in 2014 my husband, who also had mental health issues, had an accidental overdose and died. My parents helped me get into treatment after the funeral and I gave up the illicit use and just used prescription medication, which never really worked. Because I was obese I started going to the gym everyday and sometimes swimming in an attempt to lose the weight, this probably wouldn’t have been possible if I hadn’t also started using cannabis again, I would stop and smoke a joint on my way to the gym and again at home and this helped with the pain and kept me going. Unfortunately in 2014 I fell off my bike a few times, in particular onto my left knee, because of having lost the hearing in my left ear my balance wasn’t what it used to be 🙄 My knee was pretty messed up, as was my face on one occasion, but the damage all seemed to heal and I kept on exercising.

(Me after falling off my bike in 2014)

But the in 2015 the pain in my knee was on a level I had never felt before and I was going to my GP regularly asking for more pain relief, by this point I was on Brutrans patches as well as oral opiates and the doctors just kept telling me no when I asked for an increase. I stopped exercising because it was just too painful. The last time I actually had any pain freeish time was on a weekend holiday in Amsterdam where I had plentiful access to lots of different types of cannabis flower and isolate and I managed to walk around the city without the usual amount of pain stopping me.

(Me in a cannabis cafe in Amsterdam 2015)

I was eventually diagnosed with Complex Regional Pain Syndrome which is an autoimmune disease with no known cure and is also known as the suicide disease as it’s the most painful condition known to man. This is the condition that left me reliant on a wheelchair and mostly housebound, having to rely on my parents to take me food shopping and to hospital appointments.

(Me on just pharmaceutical medication)

My life was pretty much sitting on a sofa in pain, trying to watch TV to pass the time. Until one day in the summer of 2018 the pain became so intense I called 111, an ambulance crew attended and I was sat vaporising cannabis By this time I had been doing research on cannabis after accidentally stumbling across the paper by Professor Mike Barnes about the medical applications for cannabis and its derivatives, so to me using cannabis was medical, the ambulance crew gave me a look as though I was wasting their time, until they hooked me up to the machines and saw my heart was racing because of the pain. They soon started showing some sympathy and put me in the ambulance and blue lighted me to the hospital. They tried to give me IV morphine but were unable to find a suitable vein, so instead they gave me some oral morphine and left me while it started to work. Once the pain had subsided, they wrote me a prescription for a bottle of liquid morphine and sent me back home as there was nothing else they could do for me. This for me became the last straw, the pain was so bad that many times I had come close to giving up and I knew I couldn’t continue this way. It was time to find a solution! 

Next up

The slice of cake that saved my life! 

(Me at Product Earth with Dee from Nannies)