Andy's story: "I'm enjoying the little things again"

What was the hardest part of living with your symptoms before starting treatment with Releaf?

Pain, and the issues that brought for my sleep patterns. If you don't get any of that right, you can't plan anything or do anything, nothing else works. You also feel quite isolated, quite alone and quite low sometimes. 

I haven't had a lot of luck with health, but I've had luck in other areas, I've got great family and friends all round about, so there's good as well. But health-wise, no, not a lot of luck. It's a very isolating illness, and when the spinal problems aren't under control, and you're not dealing with the pain well, it's very difficult. And sleep.

Beyond the symptoms, how did it affect everything else?

I managed to work with ME to a certain extent for about seven or eight years, but then I had more of a breakdown in my health, and that was when I had three years solidly bed-bound. I was in a relationship at that point, and as much as I tried to make it work, it couldn't, so that ended as well. 

Financially things became very difficult, so it was a tough time, and emotionally very tough too, and quite low. I did a bit of CBT and some therapy, and some group things through the NHS. It's been very difficult, but I feel I'm coping a bit better these days.

How did you come to try medical cannabis, and how did you hear about Releaf?

A friend actually told me about it. I didn't even know legal cannabis was a thing. It's not something I'd really done before. Occasionally at university, but that was a long time ago, 34 years ago, so not something I'd ever used regularly. 

A friend of mine just said, “I think this will help you, it's worth having a look.” I didn't even believe it existed when he told me, but I looked it up and thought, right, brilliant. There were only a handful of companies, and yours seemed like one of the better ones to me, so I thought I'd give it a go and booked the consultation.

How did you find the sign-up process and your first consultation?

It's all done via video calls, which really suits me, and you can choose your own times, which suits me too. If you'd asked me to do this interview at 10 this morning, firstly it wouldn't have happened, and secondly I wouldn't be very chatty. So the fact that I get to make those choices is good. 

Everyone I spoke to seemed really well-informed, and I do have questions at times because I don't know a lot about this, I've been learning as I go. At the beginning, I really didn’t know anything. Everyone's been great and helpful. Because I do the monthly membership, any time I've got a problem and need to talk, I just book an appointment.

What does your Releaf treatment look like day to day? 

I've tried the pastilles, though I don't think they're necessarily for me, I've got some to try again. What I like, because I don't really like medicating during the day, is that for me, it's mainly about getting to sleep, stopping my mind racing, calming everything down and helping with pain levels at night.

I quite like the THC vape I have been prescribed. I have a small dose just before I want to go to sleep. I wear the ventilator [CPAP mask]  at night, which can make it difficult to get to sleep. So I have a few puffs of the vape, get the mask on, turn over, and it really helps me get to sleep quite quickly.

When you're struggling to sleep anyway because of the energy levels and the pain, and worrying about things, that alone has been worth doing. I also like to have some of the flower I have been prescribed earlier in the evening, and then the vape cartridge just before bed. 

That combination works best for me.

What's it helped with most? 

The main thing is that it's helping me sleep, at the right times, when I'm in pain, and with a ventilator on, none of which is easy. 

I know some people say it helps with pain. I get a lot of nerve pain from the spinal issues and, for me, it doesn't really calm the pain in a massive way, but it helps all the other things that help me cope with it. 

It's definitely helped my mood, because at night it calms down all the worry and stress and lets me get a good sleep, which is what I need. I don't use it every night, but I use it most nights, and it does seem to help on an emotional level, to stay a bit calmer and deal with the difficult times. Generally, it suits me. 

Some prescription drugs I just can't tolerate, they give me all sorts of side effects, and I've had no side effects from this that I can tell. Some people say it makes them sleepy the next day, but I'm always sleepy anyway, and the fact this lets me get a good sleep is brilliant. The only issue for me is that it can be just a little bit pricey, but in saying that, it's worth it because it's making a such a big difference.

At times, I've been depressed and quite low, because it's just been tough, you go from having quite a large world to a very small one. Tough emotionally, physically, and in terms of pain. That's what I've been dealing with, and the cannabis has helped massively

What impact has your medical cannabis treatment had on daily life, and have others seen it? 

Yeah, definitely. Once I got into a good routine of sleep, I've been more reliable. If I say I'm going to turn up on a day, I'll be there - not the mornings, but afternoons, more than likely I'll be there. 

My family have also noticed a change in my mood generally. In combination with other things I've been doing over the last year, it's made quite a really massive difference, and becoming a patient with Releaf was the first step in getting that ball rolling.

Have you faced any stigma or challenges as a medical cannabis patient?

Not massively. I'm not hiding it, but I'm not telling a lot of people either. It's just like any other treatment, I wouldn't tell people what painkillers I'm on, so I don't see why this is any different. I only use it in the evenings, generally here on my own. 

My mum was well against it to begin with, but over a few months, between what I was telling her and more than that what she was seeing, it turned her right around. She's at the point “now where if I'm having a bad night she'll say, “why didn't you have a vape and get to sleep?” 

My mum telling me to take cannabis is somewhat of a surprising turnaround, so there must be something good going on. Beyond that, my friends know, but I don't talk about it. It's just another treatment.

Why did you decide to share your story, and would you give any advice to others considering medical cannabis treatment with Releaf?

I think everyone's different. I'm in various ME groups, and some people don't even want to try this, and others do. But I think the fact that I was struggling with ME, pain, and sleep, and the fact that this just seems to suit me as a medication. It doesn't seem to have any negatives, mainly positives. 

It's not going to do you any harm to try it, and if you feel like giving it a go, then give it a go. 

Everyone I've spoken to at your end has been brilliant, they seem to know everything inside and out and are happy to give advice because I knew nothing going in. If you're struggling with depression, long-term pain, or any chronic condition that's really affecting your day-to-day, there's no harm in giving it a go, you try it for a month or two, and you're not locked into anything. That was my view going in, and I've stuck with it because I found it helpful.

Is there anything medical cannabis has allowed you to do that you were missing out on?

This year, compared to the last couple of summers, I've struggled not just with sunshine but with daylight. The sun's always been good for me, and I've got a little garden, and this year I've been out in it loads. I really think that my Releaf prescription has helped with that. 

It took a while and wasn't easy, I've had to work myself into it, but I can sit out in the garden and get an hour of sunshine now, and absolutely love it. It's the first time I've been able to do that in a couple of years.

And just in terms of reliability, that's really changed. Take last night, a last night a friend asked me to come over to watch the football. Two years ago, that would've been unlikely even in the evening, but I said, brilliant, I'll go, and I did, and I'd told him a week earlier I'd come. I knew I'd make it, and I did, and that's the difference this has made. 

Not the mornings, they're still sketchy, but anything afternoon onwards I've got a pretty good chance of making it to things, whereas before I was 50/50 at best. It's let me do a bit more and be a bit more reliable, which is good for me as well as everyone else. It helps me feel more in control of my life. 

I spend a lot of time with my niece and nephew, and I'm able to do that week in, week out now. That's to me is a massive bonus, they’re still quite little and we have great fun. Little things, local things, family things, but it's all made a difference.

To learn more about medical cannabis treatment options for the conditions covered in this Patient Story, see medical cannabis for chronic fatigue syndrome (ME/CFS).