10 Jul A Fight For Access To SATIVEX – Nick’s Story

This was sent to CLEAR, the story of a person desperate to be allowed to use cannabis for medicinal reasons who is being tortured by the present drugs policy. This is Nick’s story.

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I am a 32 year old British male, living in surrey. I suffer from Fibromyalgia, degenerative disc disease in my lower back, degenerative disease in my elbows, sciatica, scoliosis, injuries to my hips shoulders knees and ankles, gastrointestinal problems and most recently suspected colitis. I now have to use crutches within my home to get around and a wheelchair that I cannot propel myself in far outside the house, so if i want to go out i must always be meeting someone or have someone with me. I have a friend who I live with who helps me most days with many daily tasks, he works nights and my girlfriend also helps as much as she can between her work commitments and children. Neither are down as a career for me even though they both pretty much have that role.

I was a National gymnast for almost 9 years, in the army for 3 and was a plumber until a few years ago. In 2007 I contracted meningococcal meningitis and septicaemia and from then to now my problems really started.

I started gymnastics at the age of 7 and being a very hyperactive child it was perfect for me and I thrived. Towards the later stages of my career I was competing at a National level and was being prepared for a possible Olympic career. Unfortunately around the age of 13/14 I started experiencing serious pain in my elbows, which gradually got worse and worse. I had to give it all up at the age of 15 due to the pain and limited movement in my elbows, that, at the time because of the limited technology available in the hospitals ( no MRI, just X-rays, which didn’t show the true problem ) I was told was tennis and golfers elbow after some years of investigation. I also had pains in most of my other joints and back, however being a gymnast I was always in some sort of pain due to fact that I was training at least 5 times per week, for at least 3 hrs at a time, so pain became a very normal part of my life and something I very quickly without realising managed to either ignore, block out or just work through.

After giving up the gymnastics I needed to fill that hole somehow and after some rest I started playing tennis and took up judo, again still ignoring the pain and niggles I experienced almost daily. None of the new sports I was taking up ever lasted long due to my injuries.

It was around the time I left school that I first started smoking Cannabis recreationally. To begin with it was just a good laugh and a way for myself and friends to socialise. I quickly realised that despite all the reports on the news at the time of the dangers of ‘weed sending you mad’ that it actually helped my mood, pain and general state of mind so I carried on using it on a more regular basis, especially when I began work and could afford it.

At the age of 18 I joined the army which probably wasn’t the best move for me physically, but still not knowing the extent of my injuries it was a carrier move as I wanted to learn a trade. I quickly noticed a difference in my pain levels after joining, because I was back doing very strenuous exercise again. Because I was forced to stop smoking cannabis and as is the army culture I started drinking a lot, which did me no good at all health wise. I did manage to became a plumber and last for 3 years in the army before the injuries to my elbows just became too much for me again.

I left the army but not before they investigated the issue, including giving me an MRI scan which showed finally what all the X-rays had failed to; that I had quite serious degeneration of the radius at the elbow joint. Basically I had caused some fracturing due to all of the continuous impact of gymnastics. They offered me an operation before I left which I declined as I was told that it wouldn’t necessarily help and I would not have full use of my elbows. I was given codeine and some other strong painkillers by them to cope with the pain at the time, which I took for a few days but they started to give me headaches and didn’t really have much effect. I have never really got on with taking any kind of painkiller, they have never really worked on me even for headaches and normal everyday pains.

So when I left the army, after very quickly starting to self medicate again with cannabis I went straight in to my trade as a plumber which I continued for 6-7 years, even being self employed and starting up my own little plumbing business, all due to the fact that I had a very good source of cannabis at a very reasonable price. I believe at the time I was paying £125 for an oz of top quality Medicine. By this time I was self medicating daily all though the day because if I didn’t I would suffer greatly and often not be able to work or to be any good to be around socially due to the pain. It never effected my work negatively – in fact cannabis allowed me to be calmer and more efficient at work when the pain allowed. I was getting worse but I was enjoying my work and getting on with things.

I was just about coping until New Years 2007 when I contracted Meningococcal (bacterial) Meningitis and Septicaemia. I wasn’t expected to make it through and friends and family were prepared for the worst. The first I knew of this was 7 or 8 days after being admitted into hospital when they woke me up to explain what had happened to me. I lost over 2 stone in 10 days in hospital but was told that I was clear and would be fine and after a lot of pressure from myself they let me out earlier than they wanted. They told me that due to my fitness levels from my gymnastics and dense muscles that they believe these to be factors that helped my survival as well as the extremely strong antibiotic they pumped me full of.

I also believe that cannabis played a big part in my survival also. Having protected my brain from the infection, boosting the effectiveness of my endocannabinoid system and slowing the rate of infection by lowering my blood pressure.

So very soon after leaving hospital I started my recovery which was very slow, my lower back due to a lumber puncture used to diagnose me and due to my gymnastic ‘niggles’ was in a bad way so my movement was very limited and took around 8 months to recover.

I started plumbing again except this time I was noticing many more pains and niggles cropping up and this time wasn’t able to ignore them or work through them as well as before. I was having days and weeks off work, my back would randomly just give way causing me to fall in a crumpled heap on the floor and my elbows would be unusable a lot of the time along with terrible pain in my shoulders and neck.

I finally went to see a few doctors about the issues after years of just dealing with things my self. However I was made to feel like a liar and that all I wanted was benefits, when at the time all I wanted was to get fixed quickly and go back to work because I was complaining of “too many things” and they could only “deal with one at a time”. I was fobbed off and prescribed many pain killers, all of them awful degenerative drugs including Tramadol, Co-codamol and Fentanyl which made me feel as though I was slowly killing myself with them. I was completely out of it for days, I suffered terrible mood swings and my pain got worse, I suffered cramps and stiffness ten times worse than the usual symptoms (they should remove the word pain from painkiller). When i stopped taking these awful manufactured drugs I experienced a two week long come-down which was again a nasty experience. I was very ill, all my symptoms were magnified and I felt like I was going to have a heart attack daily.

Now I’m not claiming that Cannabis is the miracle cure to all my problems but in its own way it is a kind of miracle as it does so much more for me than any painkiller ever has, I can use it every day without any dangerous side effects or any side effects that effect me or my life in any negative way – I’ve been using it for over 15 years so any negative side effects from use would have shown by now. There is no fear of it killing me and the more I use it the more it helps my whole life. Its an enjoyable way to treat myself medicinally, which is a positive point also.

The only paranoia I have ever felt is the fear of the police using their power unjustly, as they do daily. It genuinely reduces my level of pain, it loosens my stiff muscles and joints and feels as though it reduces the swelling I experience, it prevents me from being depressed and helps me to control my massive levels of stress I experience daily. It quite literally allows me to get out of bed most days and not be in a depressive useless, angry, frustrated bored and stressed out state all day. It allows me to relax and helps me sleep much better than I would without it and helps me to think many times more clearly. I even am able to occasionally have days when I can do some drawing or make myself a meal. In a nutshell makes a life that would not be worth living be worth it. Without cannabis I don’t know how I would cope with everything and I don’t like to think of a situation like that.

I eventually found a doctor who was prepared to help me more than ones before and accept my cannabis use as beneficial and not just someone wanting to get “high”. Also she didn’t just give me painkillers and send me on my way. In the last few years I have had approximately half of my symptoms diagnosed and I have had keyhole surgery on my right shoulder due to an impingement, which unfortunately has caused more problems than before.

I have been seen by a pain clinic and have been offered all kinds of drugs, all with awful side effects, that if I were to take on a long term basis I would die from. I have even been offered ketamine and methadone.. Which I refused.

Approximately a year ago I was prescribed Nabilone on the NHS (because I am registered disabled I do not have to pay for it) as an alternative to the painkillers that I am constantly refusing. I was only prescribed this as I was fighting so hard to be prescribed Sativex at the time and was not taking no for an answer. Because of all the lies, ignorance and personal views around cannabis and Sativex they gave me the manufactured drug Nabilone. Now Nabilone is a synthetically made form of THC only. It does get you stoned but in a very artificial way, it helps with the pain slightly but not anything like the real thing. Unlike the many natural chemicals found in cannabis the single synthetic THC chemical in Nabilone causes headaches, over eating and confusion. It is a better alternative slightly to painkillers but not massively.

I was also at around the same time prescribed a drug called Lymecycline to fight an infection within my body. This drug is supposed to be used for a long period of time and I was taking it for about a year before I started to experience excruciating pain within my digestive system and blood in my stools. This very quickly progressed to severe diarrhoea and me loosing half a pint to a pint of blood every time I went to the toilet which was random without warning and could occur multiple times a day. I have been given a diagnosis of suspected colitis, but it could very well be something many times worse and I am having it investigated as we speak. I have had an endoscopy and a sigmoidoscopy, so far both have not made anything any clearer. I strongly suspect that Lymecycline is the main cause of my suspected colitis. Many people have taken this drug for years sometimes and many of them have had negative side effects as well. It is a form of antibiotic but did nothing for the infection I had. Anti-toxins from https://www.sehdph.org/antibiotics-online/ increment the quantity of endogenous compounds (CYP chemicals) that debase estrogen and progestogen. The expanded hormone decrease lessens the counter infective impact – ladies can get pregnant incidentally. This applies to both the small scale and smaller than expected pills. I also have tried to find out what is in the drug Nabilone but cannot, so that also could be a possible cause.

To try to control the problem on the 12th of April I gave up tobacco completely, I try to only eat organic foods now and will start juicing very soon. I don’t drink alcohol at all as it is a dangerous drug and a poison. I have successfully managed to get the severe diarrhoea and bleeding to stop to a certain extent with the help of probiotics and organic herbal supplements along with the lifestyle and diet changes. I still suffer from pain within my digestive system along with bloating and cramps but it is not as bad as it has been for years. I have not been offered anything by any doctor for this condition. Apart from the two investigations, for the last 8 months this has been going on for it feels as though I have just been left to die.

Despite all of this I have continued to fight for over two years to get prescribed Sativex by the NHS on a non payed for script as it is with my current on going one for Nabilone.

I had a small win 2 weeks ago when I finally was given a prescription for a months supply of Sativex on a private script ONLY. Now being on benefits there is no way I could normally afford this, however due to a recent error I was awarded some backdated money which paid for this script – the normal price is £565.00 from nearly every chemist and pharmacy that I rang. Now I know that it costs them £375.00 before tax and then they add on their fee which is over £100.00, which is a lot. Lucky I managed to find one who only charged me £465.00. Anyway my point is that after using it for over a week now i can confirm that the safer natural plant product Sativex is far more effective in helping me to cope with my symptoms than the factory made synthetic drug Nabilone ever was and I believe that despite the alcohol and preservative that they add to the cannabis oil in Sativex, that the benefits outweigh the dangers of whatever they put in Nabilone, enough for now until I can be prescribed Bedrocan hopefully in the near future.

In the mean time however there is no way that I can continue to pay for this on a monthly basis which therefore means that I will have to go back to the headache causing Nabilone as i keep being told there is no way I will get Sativex on an NHS prescription as it is for Ms sufferers only. The cost for the NHS for me to be on Nabilone (which is for cancer patients only mainly to help with nausea and appetite… !) is approx £200.00 every 10 days and the cost for Sativex to the NHS is approx £400 every 25 – 30 days so they are not interested in giving me something that is many times safer, more effective and cheaper than what I am currently being prescribed?

The ignorance and idiocy I have encountered during the last two years has been unbelievable and it’s only getting worse. It seems to me that they leave me with no choice but to try to find a way to grow my own medicine as otherwise, quite frankly, as you can plainly see, my life is not worth living without the daily use of cannabis and I certainly cannot afford anywhere near the amounts I actually need. However if I was to do so I would be hunted down and captured, held against my will, unjustly, without any reasonable or rational explanation or argument all for trying to help myself as nobody in the position of responsibility seems to want to do so, purely the sole purpose of protecting their reputation and the political pressure they will be put under for doing something sensible for a change.

As I keep saying to my doctor all we need is one person with some power to actually use the very small piece of intelligence that they have and simply stop being ignorant and a mindless sheep because its the easy way out and do the right thing….. Stop allowing the unnecessary torture of thousands of people to line there own pockets with bribes and backhanders from the alcohol, pharmaceutical, tobacco and timber industries.

Despite all of these factors I am only awarded the lower rate of disability, which means that in February this year I was forced out of my house that I had lived in for 4/5 years as the government decided that they would only pay half my rent. (So the bankers could get their bonuses). I was already paying a reduced rent as I had an understanding landlord and he was only charging me £700.00 a month instead of £900.00 as it should have been. Even after I moved in with my friend and reduced my rent again they still now will only pay £250.00 of my now £500.00 per month rent leaving me in arrears with my friend as I have no way to pay for the short fall. I am very lucky he is a good friend or I’m sure I would be homeless or in somewhere completely unsuitable for me and possibly nowhere near my support network.

I am quite frankly disgusted with the way I and I don’t doubt thousands of other people in similar situations to me are being treated and victimised by the people who are supposed to help and protect us, just because we need to be able to use a simple, safe and effective plant to better our lives slightly, if it wasn’t so serious it would be laughable!!