James’ Story: Sleep Solutions - journeying back to calm and clarity

Can you tell us about your health journey? What conditions have you been diagnosed with, and what treatments have you tried?

My primary condition is kidney failure, and for that I do regular dialysis. I’ve been on the waiting list for a kidney transplant for almost three years.

I’ve had kidney disease all my life, from a young age, but the symptoms went away as I reached adolescence. I guess I kind of let it slide, because it was just easier to not think about it. 

Then, about 10 years ago, it came back with vengeance. 

One day, I was finishing a train journey and could barely walk from the station to the taxi. It was gout. The doctors said, “Why on earth does this slim, healthy man have gout?” It turned out my kidneys were in very bad shape. Since then, my nephrology team has tried to manage as best they can, until eventually I started dialysis in March of this year.

There are serious secondary symptoms related to my kidney disease that are also problematic, and restless leg syndrome is the worst. It causes me great discomfort and makes it almost impossible to sleep. 

Many late stage kidney disease patients suffer from restless leg syndrome. There is a medication for it called ropinirole, but I was very hesitant to take that because it has incredibly serious side effects. It can give people sort of compulsive behaviours: gambling, drug taking, illicit sexual relationships, the list goes on. When I researched the medication online, it was scary—people taking ropinirole have ended up doing things they really regretted. 

Eventually, my legs got so bad that I needed to find some treatment, and my doctors assured me the ropinirole wouldn't cause any problems, so I reluctantly started taking it. It immediately sent my restless legs into overdrive—exactly the opposite effect I was looking for. At night, my legs went from a sort of irritation that I could handle to something much worse, and I started to suffer total insomnia—literally going full nights without sleep. 

The ropinirole also made my mind constantly active, and I was completely unable to calm down at night, which made my insomnia even worse. I went to see a private doctor, and was prescribed Zopiclone, but that still wasn't sufficient. 

That’s when I went to Releaf and got prescribed medical cannabis, and that sorted things out completely. Late in the evening, when my restless leg syndrome gets really bad, medical cannabis is basically the only thing that works—every other treatment has failed. 

How do your conditions affect your day-to-day life?

I certainly wouldn't recommend my conditions to anyone. I'd go so far as to say that, without effective treatments, these types of conditions can destroy your life completely.  

My lack of sleep destroys work productivity, and affects my general enjoyment of life. It’s also very hard on my relationships. I don't sleep in the same bed as my wife, which is a big disappointment because I always loved sharing a room with her. 

With the insomnia and restless legs, we’ve even had to get separate hotel rooms if we're travelling, and flights and train journeys are absolute torture. We took a two-hour flight just recently, and it was just awful. A couple of years ago, we took a 10-hour flight, and I nearly lost my mind—all because of the insatiable urge to move my legs. 

I know the term “restless legs” sounds very mild, but it's not.

When did you first discover medical cannabis could be an effective treatment for restless leg syndrome and insomnia?

I was aware of a case where a boy called Billy Caldwell who had severe epilepsy and fought to have medical cannabis made available to him by the NHS. Ever since I heard that story in 2018, I thought that it was probably only a matter of time before the UK was going to change the rules and allow medical cannabis to be used as a treatment for certain conditions. 

Soon after, I heard that it was, in fact, legalised, but I assumed I wasn’t eligible. I thought that my symptoms wouldn’t fit into the NHS’s NICE guidelines. 

My conditions are very complicated, and restless leg syndrome isn’t taken very seriously, even by people in the medical profession. They think it’s a joke—that you just get a bit fidgety—but I imagine it’s similar to an epileptic seizure. It comes straight from my head, down my body and into my limbs. It's like a very physical thing.

I didn’t know where to turn, so I tried treating myself with “street” cannabis. That was somewhat helpful, but I was very averse to buying it illegally. I found the situation very depressing. Cannabis is supposed to be a natural product. When it comes from an unknown, illicit source, I have absolutely no idea how it was produced or what I’m getting. It could be drenched in any fertiliser that makes it grow faster and stronger to maximise profit, and I doubt those fertilisers are very good for you. 

My insomnia persisted, and I think it was out of desperation that I started looking at medical cannabis again a few months ago. Really, I was looking to find any weakness in the NHS’s wording of their criteria that would allow me to get a prescription. I think that's when Releaf popped up in a Google search. I called the number, and after that everything was so easy. I met all the criteria without difficulty,

Have you noticed a difference between “street” cannabis and your medical cannabis treatment at Releaf? 

I think it’s absolutely unacceptable that people with chronic health conditions feel they have to buy cannabis from someone on the street. There’s no reason for that. It’s a healthcare issue. 

The quality of the medical cannabis I’ve received from Releaf is a dramatic improvement over anything I’ve tried before, and its effectiveness for treating insomnia is much more reliable. I'm so grateful, because before medical cannabis, my nights were full of discomfort. 

Before medical cannabis, I simply could not find that space, that moment, that period of peacefulness, where I can be still long enough to fall asleep. I only need five to 10 minutes of calm and stillness to achieve sleep, and medical cannabis usually gives me about a 30-minute window.

Even if vaping before bed fails in the first attempt, the second will is always effective, and the next day, I wake up fresh—I don't feel groggy or have any kind of hangover-like effects. 

I run my own business, and I really value the ability to sleep. If I don't sleep, I don't get to earn money. Now, I can get up and get to work, and I’m productive. I’m no longer hoping that the meds work tonight, or coping with two hours sleep and being grateful for it. I've got control of the situation now, and I'm focused on my business, so I can be successful financially. 

How have your family and friends reacted to your treatment with medical cannabis? Do you feel a stigma associated with it?

I don't really care who knows about my treatment, but almost everyone I've spoken to has been very supportive and open-minded. I don’t exactly go out of my way to tell people about it—I haven't told my clients, for example—because these are my issues, and the treatment is no one else’s business. 

I’ve told all my doctors. I'm seeing some serious experts in the fields of nephrology, and none of the doctors have had any objections to my use of cannabis. In fact, one of them encouraged me to continue using it throughout my dialysis treatment and even after I receive my kidney transplant, because they want my blood chemistry to remain stable, and if I get my sleep it helps with that. I’ve actually found the entire medical establishment very open to medical cannabis as a treatment. 

I suppose my mum found it slightly challenging. She came around to my flat one day, and I showed her the vaporiser and said, “This is something I do now.” After I explained everything, she was fine with it. It was a bridge crossed.  

My sense is that the stigma surrounding medical cannabis is changing quickly and dramatically, and it’s about time, because the stigma has no basis in reality. When President Nixon began the war on drugs in the early 1970s, things went downhill quickly regarding public perception. A lot of the negative feelings people have today are based on racist propaganda from that period. People’s feelings about it are just not based on scientific evidence. It's incredibly frustrating.

What was it like to receive your Releaf Starter Kit with your medical cannabis card? 

I couldn't believe it when it first arrived.

Unpacking the Starter Kit was a little bit like receiving something from Fortnum and Mason. It's very well presented with beautiful branding, and there are genuinely useful, high value, high quality things inside. I really enjoyed receiving it and even shared pictures of the unboxing with friends. 

I haven't tested the medical cannabis card out yet, and don’t intend to, but it’s nice to know it’s there.  

Now that you’re sleeping again and feeling better, what are your hopes for the coming months? 

I’m completely focused on getting a kidney transplant. I've been on the waiting list for nearly three years, which is a pretty long time for people my age, but I’m hoping to have the surgery within the next year.

After the kidney transplant, I’m told that the restless leg syndrome could simply just go away. Until then, I’ll continue the medical cannabis at Releaf so that I can continue to sleep and function normally.

What would you like to say to people who might not be aware that medical cannabis is a legal treatment option?

People with chronic health conditions need to be aware that, according to the law, if two or more health treatments have failed, they are eligible to apply to get medical cannabis. I don't know where that message got buried. I wasn’t even aware of that fact until recently. There must be thousands of people in this country who would find that information relevant. 

There is still a lot of work to be done to spread awareness about medical cannabis. I'm certainly going to spread the word myself, and I'd love to see more people opening up about this subject in the media and sharing their stories. You rarely hear about medical cannabis, unless you specifically go looking for it. That needs to change. 

The success of medical cannabis needs to hit a critical mass and become something everyone talks about. It’s interesting that it hasn’t reached that point already because it really has the ability to change people's lives for the better. It ticks all the boxes of an excellent media story.

I think, as medical cannabis patients, we've just got to take a bold step and proudly say, “Yes, I'm using medical cannabis.” If the public hears enough people like myself tell their success stories, the stigma will disappear forever.