‘I don’t think anyone truly understood how very poorly I was - aside from those very close to me. I am stubborn and I have an excess of pride which is cumbersome at best.’
I have a long and protracted relationship with the NHS. In 2008 after a year inside the walls of Liverpool Royal hooked up to lifesaving machines they saved my life.....just....there were some hairy moments. My body had turned kamikaze, the only thing keeping me alive? My stubbornness, donated blood and a machine that would drain my body of all of its blood supply, clean it and put it back into a tube in my heart; aka Science fiction.
There were also a million humbling and beautiful moments in that ward. Hospitals do that to people, everyone is reduced to being just another human. No one bat an eyelid at screaming fits, someone accidently shitting on the floor, projectile vomiting, silence, anger. Most people on the ward had cancer of some kind. These months sitting and battling with these people changed my life. There ain’t nothing like a bit of perspective. Now I had massive balls and I didn’t know what to do with them. As soon as I could walk I sold everything I had and gave up everything that didn’t give me fulfilment. After a battle of the wills between me and my specialist I moved 260 miles away to Brighton to study as a mature student.
I met my (super) wife, who is my absolute rock. We got a dog and settled into suburbia in Hove, we had creative jobs, we started a company, we loved our new Southern selves. In 2010 I suffered a stroke whilst I was in my third year at University, thankfully I still managed to graduate (stubbornness strikes) and after an agonising circuit of an ice skating rink (yeah I tried to ice skate a month after a stroke) I knew my body wasn’t loving life. Two months later I was diagnosed with everything. Everything. Its like my body is on some kind of crash course through the alphabet to experience every condition known to man. I admire its ambition but come on.....Really? The main condition was fibromyalgia, the doctor assured me that you don’t die OF fibromyalgia, but you will die WITH fibromyalgia. Great.....is that a challenge?
Over the next five years my stubbornness was tested as my body declined to operate. I was in my twenties and some days I couldn’t dress myself, get downstairs or even make a cup of tea. My brain frequently threw raves of the German techno kind, sending signals out like a laser show. This effected everything, from moving to speaking. My word-recall was hilarious at times. My life had become that of an S&M charades enthusiast.
If I had a job on I would need to spend 4 days resting in preparation and order a poppy field of morphine to get me through the aftermath. It was messy. Super-wife took over everything, supporting us financially, coming home after a 13 hour day and cooking Italian for us and generally being a badass. Towards the end of last year I was having one ‘good’ day a week if I was lucky. I don’t think anyone truly understood how very poorly I was - aside from those very close to me. I am stubborn and I have an excess of pride which is cumbersome at best. SW bossed it, she knows me more than I like to let on, shes the reason I am still here.
Six years hit and I was still in rapid decline. I had been taking morphine and fentanyl in increasing doses for years now. Opiates are great for pain but they also numb all of your other bits. I was struggling to FEEL the world as I hobbled along in a zombified state - this was not sustainable.
Insomnia is part and parcel of living with ‘everything’ and when my body stopped responding to four sleeping tablets a night I decided to smoke a joint one night to try and relax my body. Ten mins later I felt like something was missing.....What was this?..... I froze not wanting the feeling to stop and whispered to SW ‘hey......I am NOT in ANY pain’ She looked at me like I had just announced that I was a lizard. We didn’t know what to do with it.
This began my research on the use of strain-specific cannabis, I managed to make some contacts through the local cannabis clubs and began using a sativa strain in the daytime and indicas to sleep. I stopped using the morphine all together and managed to withdraw to half-dose fentanyl without methadone or subutex, just with the use of cannabis. I was FINALLY on top of the pain and the sativa strains were kicking ass with the fatigue, my tremor quietened down, I could get up in the morning without a gruelling battle, I could think and speak in actual sentences, I even called my doctor enthusiastically to tell him that I was painting a fence.
Within four weeks I was walking without my walking stick, I dusted off my hiking boots and started to increase my exercise regime as my body was initially weak and grouchy. The boost that my endocannabinoid system experiences when I dose is akin to putting Enya on stage at that German rave - all of the trouble makers calm down and have a nap while I can get on with living.
This one little plant has saved the NHS £500 a month on my prescription alone, imagine that scaled up? This one little plant can treat hundreds of conditions and potentially has the ability to save our health service with a boost in what is approximated to be one billion a year in tax revenue and a substantial reduction in people using subsidised medication.
I have spoken to several people who are suffering, yet they are so terrified of prosecution that they feel that medicating with cannabis isn’t an option for them. We as a society are letting those people down.
I am very much enjoying working with the UPA to change that.
United Patients Alliance Ltd are a Not For Profit organisation run by chronically ill patient volunteers. Our charity application is in progress. Unfortunately everything we do costs money as well as time.
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