He says: “It’s cruel. I am being denied the medicine I need. All I want to do is to have a life, get married and, all well and good, go back to doing a few hours work if I can, but as things stand at the moment there is no chance.
“I can barely look after myself, so how can I meet someone, have a relationship and get married, let alone have kids, it’s too difficult. So I’m being held back by this out-of-date attitude we have here in the UK.”
Diagnosed with fibromyalgia in his early 20s Robert criss-crossed the globe as an IT consultant with the
help of a cocktail of analgesics. But the excruciating pain left him unable to work by his early 30s and, on the recommendation of a friend, he found relief and comfort for his condition from cannabis in his early 40s.
He said: “My FM (fibromyalgia) can be very severe and at times I can spend days or weeks bedridden, as well as the constant battle fighting either insomnia or chronic fatigue, as well exhaustion.“It affects my balance, coordination, circulation, grip, gait, to name just a few.“I’ve struggled to hold down employment as I was in so much pain and constantly fatigued.“By 2005 I could not work any longer due to the pain affecting my entire body, all year round, as opposed to just during the cold winter months.”
But it wasn’t until a decade later that Robert looked for help for his condition out-with the medical profession. He said: “As I was in so much pain, it was beginning to make me feel like I was losing the will to live. The benefit of having intravenous infusions of Lidocaine (local anaesthetic) and hydrotherapy had stopped offering me enough pain relief to allow me to stay in employment and remain positively active.
“I knew I needed to do something as my life on fentanyl, buprenorphine, morphine and tramadol (all opioids) was helping deal with the pain, but causing many other problems such as severe nausea, headaches, asthma and my skin becoming raw and puffy. I became housebound for the majority of the time.
“I was spending most days in bed, fatigued and unable to take care of myself as the medication was very difficult to tolerate.“So I spent several months researching on the internet and discovered many people who had found that cannabis had helped with FM and similar ailments.” At first, Robert smoked the
cannabis flower, and also took oil under his tongue and noticed immediate improvements.
He said: “The pain became much more manageable. I was, and still am, more stable now than I have ever
been and I am sleeping better at night. I am now taking none of the tablets like Tizanidine, Clonazepam,
Temazepam, Zolpidem and Diazepam.”In order to stay within the law, Robert applied for a Medicinal Cannabis License but was refused.
He also requested access to licensed drugs, including Nabilone – used to treat the nauseous side effects of
chemotherapy – but was again refused. With these avenues blocked Robert sought succour overseas, successfully securing prescription oil and cannabis flowers from a Dutch doctor.
And, for 18 months he successfully criss-crossed the Channel for supplies of cannabis oil and flowers bringing long-lasting balm to his discomfort. Robert’s medication – which contains the psycho-active ingredient THC -was supplied through a Dutch pharmacy and made by Dutch manufacturer Bedrocan.
He said: “THC takes you away from the pain. It takes you to a different place in your mind, somewhere to relax, a break from the screaming, shouting frustration and hurt.”
He likes the way the system operates in Holland and would like to see a similar one adopted by the UK. “I could buy the drugs ‘off the street’ and make my own oils but if it comes off the street you don’t know what’s in it; it could easily cause psychosis, which is also why I rather vape than smoke.
“People off the street, they help me, but that’s not the way to go. You don’t know where the money’s going; could it be directly funding terrorism? It’s ethically questionable.
“As well as these issues over quality I’m a law-abiding citizen, I don’t want to be doing something wrong. I want to stay on the right side of the law. “There are all kind of pitfalls with my cannabis life right now. I know that if I’m ‘too high’ I have to wait until it passes before I drive, but nevertheless, if there was to be an accident and I am on the medication without a prescription it could cause all kinds of difficulties.
“It’s stopping me going out, it’s stopping me doing things, it’s a block in my life. But taking medicinal grade cannabis is different, if doctors think there’s a risk then they would allow you to take in a different way.”
During the 18 months when his life was more manageable Robert pursued his passion for cinema as Executive Producer of a 15-minute short film ‘Samuel-613’ which was nominated for a BAFTA award for
best short film/drama in 2016. However, this good humour was not set to last and in June last year he
was stopped by customs officers returning from Holland and his newly prescribed £1,000 cannabis
cargo was seized and destroyed.
With his drugs confined Robert opted to leave the cannabis alone for while; saying he felt there was still enough in his system to get him through the cold winter months. But, a shunt on the M25, involving three cars back in June last year when a car ran into the back of his vehicle while in stationary traffic, ruined his summer and forced a return to Holland for a one-off trip for some cannabis oil.
Robert says his GP, pain consultants, pain psychiatrists, physiotherapists, and rheumatologists have all been very supportive but are unable to provide private prescriptions within the confines of the UK’s current legal position. He said: “I told them what I was planning to do and being honest with them has helped bolster their support further.
“They noticed how much the medication has helped during the period of eighteen months when I maintained a regular routine, so there is no dispute whether it is the right thing for me to do. “The way I see this is that I am a victim, I’m not a criminal. I feel like a criminal, but I’m a victim.”
While happy to see the law change in the UK he still feels it will be sometime before he can secure, on prescription, the medical cannabis he needs.
He says: “This time last year, we had no chance of the law being changed and I personally believe it won’t be until January 2020, at the earliest, when I’ll be able to obtain what seems, still almost, impossible right now.
“I am pleased, but there is still a very long way to go in my opinion and, despite my circumstances it remains very difficult, or in my case, impossible for me to obtain it legally through the NHS. My GP, based on my history, should be allowed to prescribe to me, but sadly this is not the case.
“My pain consultant and the multidisciplinary team at my hospital are hesitant as they do not have enough understanding of cannabis and how it should be prescribed, how it can be sourced, let alone the many different strains from various cannabis producers available.
“I’ve been told it could be at least another 12 months before I could be prescribed cannabis through the NHS, but as the left-hand does not know what the right hand is doing, I think it could be much longer.”
The Government recently confirmed that up to 80,000 registered consultants will be able to prescribe cannabis, but Robert highlights how the vast majority of these will need training, causing further delay and uncertainty.
In time Robert hopes he’ll be able to get to a Tottenham Hotspur home game in the new stadium and pursue his family and working dreams. But, in the meantime, he still hopes he’ll be well enough to attend the Berlin Film Festival.
He added, “I’ve been ill for over 20 years, and it may well be a few more before I can access the correct
treatment to address my condition. “So for me, nothing has changed, until concrete plans are put in place
and this will not happen overnight.”
From catwalks to cannabidiol – a former fashion model’s journey to CBD discovery
Model Kelly Brooks was forced to give up her dream career when Lyme disease left her unable to get out of bed. She tells Cannabis Health how she is rebuilding her life with the help of CBD.
A few years ago Kelly Brooks, 27, was living her dream on the catwalks of New York, modelling for Jean-Paul Gaultier and gracing the pages of Vanity Fair, Glamour and Italian Vogue.
Now her life couldn’t be more different. In 2018 she moved to the UK with her husband Layton and the couple are looking to start a family in their hometown of Ringwood, Hampshire.
Kelly is the operations manager of a five-star spa and teaches barre fitness classes to those living with an illness or injury.
You would never know that she has endured years of symptoms such as agonising joint pain, extreme fatigue, tremors and at her worst being unable to walk, as a result of chronic Lyme disease.
Growing up in Maine in the United States, Kelly first felt something was wrong in her early teens. She went from being an ‘active, healthy kid’ who was hardly ever sick, to experiencing periods of blackouts and vomiting.
Medics put it down to everything from a sodium deficiency, fibromyalgia and Epstein–Barr virus, to depression, an eating disorder and even attention-seeking. It took almost a decade for doctors to diagnose the tick-borne disease. Even when things took a turn for the worse at the age of 17.
“All of a sudden I was completely exhausted. I went home from school one day, got into bed and didn’t get out for weeks,” Kelly says.
“I had joint pain, migraines and extreme exhaustion – I was sleeping about 20 hours a day. I wish they had taken me more seriously at that point.”
A year later, aged 18, she was eventually tested for Lyme disease at the suggestion of a doctor who happened to be a family friend. It came back positive.
Despite her diagnosis, Kelly was determined to follow her dreams and moved to New York to go to study fashion buying. When a chance opportunity to help out a fellow student ended up launching her modelling career, she ended up quitting college to focus on it full-time.
She was living the dream, walking in runways shows at New York fashion week, working with household brands such as Bumble and Bumble and travelling across the world to Paris and Milan. But she was secretly struggling to balance a blossoming career with her crippling health condition.
“At first I could push through it and rest when I got home, but over the years it became really difficult, especially dealing with the pressure of losing weight – I wasn’t eating enough and was exercising too much – and was struggling to stand for long periods of time. I did faint at a couple of jobs,” says Kelly.
She got into a cycle of treating the Lyme disease with strong antibiotics for several weeks and before returning to the same lifestyle and running herself into the ground.
But as her symptoms became more neurological, leaving her struggling to walk and lift her legs, her then-boyfriend Layton gave her a much-needed wake-up call.
“One evening I came home from doing runway shows at fashion week and I completely collapsed. I couldn’t walk across the room.
“Layton said ‘ I can’t watch you keep doing this to yourself, you need to stop’,” she says.
“It was really hard to give up, I felt like it was so unfair, but by the end, I just wanted to do anything to feel better.”
It was a fellow Lyme disease patient in New York who introduced Kelly to CBD.
“I’ve never really done the herbal route, so I was sceptical,” she admits.
“They sent me a cream and I put it on the joints that were hurting me the most and within a few minutes, the pain had subsided.
“I couldn’t believe how much it helped because I’d had prescription medication for joint pain and nothing had worked but CBD did.”
When the couple moved to the UK to be closer to Layton’s family, the CBD industry was just in its infancy. She struggled to find a good quality, reasonably priced product and was confused by a wealth of conflicting research.
Layton took matters into his own hands to help his wife and reaching out to a colleague with previous business experience, Claudio Santos, they founded CBD Shopy.
Now a leading online retailer, the website aims to help customers find reputable and high-quality products, while also educating people about CBD.
Claudio Santos said: “Studies have indicated that CBD has anti-inflammatory properties and we’ve had numerous customers giving feedback that CBD oil and cream has helped them with joint and muscular pain.”
And Kelly is its biggest advocate, claiming CBD has allowed her to rebuild her life.
“I use the CBD cream on all of my joints every day and currently don’t have the constant pain,” she says.
“I still have some symptoms and when I overdo things it takes me longer to recover, but I’m quite good now at managing how much I can do each day.”
CBD has helped with her mental health too, easing symptoms of anxiety and insomnia.
“I was formerly on sleeping medication, but now I use CBD before bed and no longer have to take it,” she says.
“I do still suffer from depression and anxiety but I have pretty good days where I’m at 80-85 per cent. I even get some 95 per cent days.
“I’m really happy with where I am now.”
To find out more visit www.cbdshopy.co.uk
“I’m not a zombie anymore”: Why this mum-of-five is speaking out about her medical cannabis use
Mum-of-five Kayleigh Compston is the first Scottish patient to be legally prescribed medical cannabis as part of Project Twenty21. Now she’s speaking out to tackle the stigma.
“Medical cannabis has one hundred percent made me a better mum,” says 26-year-old Kayleigh Compston.
A mum-of-five, she has recently become the first person in Scotland to be prescribed cannabis legally, having enrolled in Project Twenty21, the pioneering study led by Dr David Nutt.
Kayleigh, who has fibromyalgia and functional neurological disorder (FND), which cause chronic pain, paralysis and muscle spasms, had spent years being prescribed heavy opiates such as morphine to manage her symptoms.
But now she says medical cannabis has allowed her to feel human again.
“There have been no negative side effects from cannabis whereas with pharmaceuticals there were many,” says Kayleigh, who lives in the Shetland Islands with her partner Matthew Ross and is mum to Tyler, nine, Teegan, eight, Tommy-Lee, seven, Teejay, five and Tianna, four.
“The issue with opiates is that your body gets used to it, so the doses get higher and higher and stronger and stronger.
“Now I’m not a zombie anymore, I lead a much more normal life.”
Kayleigh, whose conditions have been known to leave her bed-bound, continues: “It doesn’t take away the symptoms, but it helps you to forget about them and it relaxes my muscles spasms.
“It’s actually made me feel human and I’ve been able to get on with doing things for my kids,” she continues.
“It’s nice to be able to play games with them and drop them off at school – things which I couldn’t do when I was paralysed in bed for months.”
Kayleigh says she is also less reliant on Matthew now, who is her full-time carer.
“It’s hard work with the kids and I still have to rely on him for things, but much less so.”
And the cannabis – which she grinds and vapes in a herbal vaporizer eight times a day – also helps relieve her symptoms of anxiety and PTSD.
Matthew, 25, is also enrolled in Project Twenty21 and previously had a private prescription for medical cannabis to help manage his Multiple Sclerosis (MS).
The project is aiming to enrol 20,000 patients by the end of 2021, creating the largest body of evidence for the effectiveness of medical cannabis. Its goal is to demonstrate to policymakers that medical cannabis should be as widely available, and affordable, as other approved medicines for patients who would benefit from them.
Project Twenty21 is covering the costs of a private prescription up to £150 per product per month for those with Anxiety Disorder, Chronic Pain, MS, PTSD, Substance Use Disorder (as a harm reduction strategy) and Tourette’s Syndrome and researchers will collect data about their quality of life for up to two years.
It is hoped that the findings will make a powerful case for NHS funding.
Despite first trying weed as a curious teenager, Kayleigh never thought about it medically until a few years ago and admits to self-prescribing in an attempt to find an alternative to opiates.
Now they have legal prescriptions, the couple are advocating for wider access to medical cannabis and are keen to speak out to help change attitudes in their home country.
“I feel like the Shetland Islands are quite behind anyway, and some of the older generation still have outdated views,” says Kayleigh.
“There is still a stigma, but I think people need to open their eyes and realise that all the evidence is out there as to how much it actually changes people’s lives.”
“Like any medication, it can have side effects but it’s not what people say it is.”
Kayleigh is starting her education close to home, by being open with her children about her prescription.
“My older three children know what my medication is now. It’s about educating them that cannabis is a medication, just like any of the others I have taken.
“I wanted them to know before they get told that it’s ‘bad’.
She adds: “The children have seen how much better quality of life I have now.
“They know first-hand how much it has helped mummy.”
For more information about Project Twenty21 visit www.drugscience.org.uk/twenty21-is-now-live
Save your HRT, give me CBD
Going through the menopause hit Jenny hard, with an array of side-effects leaving her exhausted and wanting to hide from the world. Here, she shares her story of how CBD is helping her to rediscover the fun-loving woman she used to be.
As a woman in my 50s, it’s perfectly normal to be going through the menopause. But while I’ve always known it was coming, I had never appreciated how bad it would actually be.
Menopause, as all the women’s magazines tell you, happens to us all. A few hot flushes, bit of difficulty sleeping, stick on an HRT patch and you’ll get through.
For many that may well be the case, but the reality for me has been so much worse.
The sweating at night has to be one of the most awful parts. Waking up night after night, dripping in sweat, the bed sheets drenched, has become the normal over the past 18 months.
And once I’m up during the night, I can’t get back to sleep. Regularly I get up at 3 or 4am, and go downstairs to watch whatever appallingly bad TV shows are shown at that hour.
I’ll then find myself falling asleep during the day if I’m at home, which I feel is me slipping further down the slope into old age.
Hot flushes happen all of the time. And when we say hot, it’s not just a case of taking your cardigan off, the heat is incredible.
Regularly I’ll be out at lunch, sitting in just a camisole while everyone else is in jumpers, fanning myself down with whatever beer mat or menu card comes to hand.
I may as well just have Menopausal Woman written on my top as it’s so obvious.
I didn’t think the menopause would affect me so much, and I also didn’t expect to cope this badly with it.
I have always had a fantastic social life, going to dinners and lunches several times a week, and I love getting dressed up.
Since the onset of my menopause, with the tiredness and the unexpected hot flushes in particular, I’ve lost my enjoyment of it all.
The worry you’re going to fall asleep at the dinner table (that has happened before, but thankfully in my own home) or aren’t going to feel great when you’re there has seen me decline so many invitations.
Friends are asking whether I’m OK, whether I’m ‘me’, as this is so out of character.
And in truth, over the last 18 months, I do feel like I’ve lost my old self to quite an extent – although in the last few weeks, I do feel like I’m getting her back thanks to a chance discovery while online shopping.
While browsing for some new shoes, I hadn’t felt like going out that day, I came across one of those pop-up adverts for CBD.
I knew it was associated with cannabis but didn’t really know much more than that, but I continued to shop for heels and forgot about it.
That night, again, I couldn’t sleep. Having watched three back to back Judge Judy episodes, which is surely enough for anyone, that CBD advert came into my mind again.
I’d read a lot about cannabis over the past few years and the wonderful effect it had had on so many children.
I’d never had a personal interest in or connection to cannabis, but the fact people in desperate need had been denied it was something I believed was wrong.
For some reason, I decided to search CBD and menopause. HRT for me had been rubbish, so it was worth some investigation at least.
To my astonishment, there were so many stories about the strong connection between the two, the many benefits there could be, how CBD could help with so many symptoms.
I couldn’t believe it. I’m not sure I believe in fate, but there was a reason that random advert popped up on my shoe site that day.
I bought some CBD in my local shopping centre – it’s perfectly legal and readily available, which is something I hadn’t realised.
I thought it must have been a banned substance because of how it’s spoken about in whispers.
It’s not something I feel I could tell my friends I’m using as I’m not sure how they’d react. But discovering CBD has been the most fantastic thing to happen to me in a long while.
The past few weeks have been so much better. I have enjoyed a good sleep for the first time since my menopause symptoms began and am sleeping through the night again.
I’ve also felt so much better in myself, like I want to make an effort and put my make up on and put some nice clothes on.
If I had anywhere to go at present, I’d love to put my heels and best dresses on and get back out there. While I still have hot flushes they haven’t been anywhere near the extent they were before.
This is probably due in great part to the fact I’m sleeping, and sleep is at the root of so much in terms of quality of life, but CBD is said to have mood lifting properties, so that could well be another benefit.
Nothing else in my routine has changed apart from my use of CBD so I can only conclude that is the reason.
The difference in only a few weeks has been a great surprise. I do feel like I have the confidence to start accepting those invitations again.
The COVID-19 lockdown has come at a good time for me, as CBD is doing its thing for me, and I’m getting myself back to a position where I feel like ‘me’ again.
There is undoubtedly a taboo around the use of CBD, which I think is unwarranted.
I think we are far too closed-minded as a society and we don’t talk about these things which seem a bit awkward.
Even trying to discuss the menopause with some people is a conversation-changer in itself.
I do think I’d get some difficult reactions if I talked about my CBD use, which is a real shame.
I’d love to share my CBD secret with my friends, and perhaps I will at some point. Or perhaps they’re all already using it anyway.
Jenny did not wish to give her full name.
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