MARIJUANA AND MULTIPLE SCLEROSIS
I had a starred life until I was 26. I had been very successful at school, winning a place at Oxford University in 1975 to do a degree in Ancient Greek and Latin. After I graduated I worked in television as a producer of documentary features, specializing in medicine and science. This involved traveling around the world, and it was first after filming in Bangladesh in 1982, that I became aware there some something not quite right with me. It wasn't dramatic to begin with -- I simply felt extremely tired and had rather strange sensations in my face and limbs. I felt sick and uncoordinated, and found it difficult to function properly. My doctor referred me to a neurologist who told me that I'd picked up a rare form of malaria in Bangladesh. I'd recover, he said, but it may flare up occasionally. Over the next year I did have episodes of bad health, once resulting in hospital treatment for vertigo and vomiting. All the time I glumly berated myself for not taking the last three days of anti-malaria tablets. When I was due to go filming in Japan in 1983, I decided to have an overall health check. I found out that I did not have malaria, and was told that my problems were probably due to stress and overwork.
I was in Japan for a few weeks on my own, and during that time my condition rapidly deteriorated, so that when the film crew came out they all commented on my poor walking and balance. It was hard to disguise the fact that I got very sick whenever I went on a car journey. Somehow I managed to set up and produce all the filming, but when I returned to England I couldn't function at all normally. My speech became very unclear, so people could not understand me on the telephone. I could not write or use a keyboard either. The doctor I was working with on my television programs bullied me into seeing another neurologist, who admitted me to hospital straightaway, saying I had classic symptoms of a brain tumor. A brain scan soon showed this was not the problem. It was only when I talked to doctors later that I realized I had multiple sclerosis, as the neurologist later confirmed.
Treatment with steroids was one of my worst experiences with MS. By this time I could hardly walk, but that seemed a minor problem compared to the side effects of ACTH. I gained a massive amount of weight and developed acne, but worst of all, I started to become paranoid and irrational. On my next hospital visit the neurologist said he was not surprised. He said it was a straightforward case of steroid psychosis.
It took a long time to recover from the horrendous effects of the steroids, but I made great efforts through diet and exercise to look after myself, and for several years I was able to keep on top of the disease. I carried on working (although mainly from the studio rather than on location), married my partner of several years, inherited two teenage stepchildren, and had two children in 1986 and 1990. But after my second child was born I began to experience more sickness, stiffness, and discomfort in my bladder. I was getting up to go to the toilet twelve times a night and not sleeping. This exacerbated all my other symptoms -- impaired vision, poor balance, fatigue, and susceptibility to infection. I became more and more ill.
The medication prescribed for nausea made me drowsy; the medication for my bladder gave me awful headaches and blurred my already defective vision. The Valium prescribed for muscle spasms was unpleasantly disorienting. These drugs didn't even solve the problem, since I was still too uncomfortable to sleep. Temazepam sleeping pills did help me sleep, but they made me anxious and were very habit-forming. I started to become gloomy and depressed. All the future seemed to hold was deteriorating health and the prospect of unacceptable treatment.
I felt I was getting into a downward spiral and talked to friends with MS to see if they had any advice. One showed me an article from an American magazine saying that doctors wanted to be able to prescribe cannabis for MS patients. My own experience of cannabis was occasional embarrassed experimenting in student days, and I knew nothing of its therapeutic qualities. I asked all the doctors I saw what they thought. None of them knew much about it, but they assured me it couldn't do me much harm in moderate quantities, and indeed was probably safer than the drugs they were prescribing. Since I felt I had been let down by orthodox medicine, I decided to see if it could help.
As I am now a middle-class suburban housewife with two young children, there was a bit of a problem getting hold of cannabis. I tentatively sounded out friends and acquaintances (often with some embarrassment!) until I found a regular recreational smoker who was happy to help. She came round one evening when the children were in bed and smoked some with me. I asked her naive questions -- how do I roll a joint, how long will the sensation last, will I have a hangover the next morning? The physical effects were almost immediate and extremely liberating. I felt as though a heavy weight had been lifted from me. The tension and discomfort in my spine and bladder melted away. I was comfortable with my body for the first time in years, and I slept soundly that night. The next day I was happy, knowing that there was something that would help me with the MS.
I found someone who could supply me regularly, and after a few weeks of trial and error I discovered that if I simply smoked a joint before I went to bed, I could dispense with the other medicines. Cannabis relieves the nausea and stiffness and most importantly the discomfort in my bladder. Over the years I had gradually lost control of my bladder. Sometimes I was incontinent, but mostly I was unable to pass water at all, which resulted in great discomfort and constant urinary infections. Eventually I had to take a daily maintenance dose of antibiotics and use a catheter. Cannabis makes a great difference. Now I don't have accidents nearly so often. I still use a catheter, but now I am able to empty my bladder at least partially. I don't get nearly so many infections and no longer take antibiotics. This has been the most liberating effect of cannabis; with something as unpleasant and embarrassing as losing bladder control, it only takes a small improvement to make things seem much better.
Cannabis has not "cured" my MS, but my general health is very much improved. My MS symptoms vary considerably. Sometimes I appear quite able-bodied for short periods, and at other times I look and sound very handicapped. I can be cheerful about my situation, but when the MS is bad I become very introspective and negative. I know a lot of the therapeutic benefit is psychological as well as physical. MS makes me slightly under par all the time, so that even the simplest thing takes an enormous effort and leaves me exhausted. I don't have to get high for cannabis to lift my mood, make me feel calm and positive and able to carry on more normally.
I wasn't very happy smoking it with regular tobacco, so I started mixing it with herbal tobacco sold in health food shops. The best routine for me is to take a small amount sprinkled in hot drinks during the day, and later smoke a joint at bed time.
For several years I grew marijuana from seeds you can purchase by mail order as legally as fish bait. This was an ideal situation, but I became scared and stopped. We live only 50 yards from a large district police station, and many police officers live in the same area. My two sons used to enjoy dressing up as policemen, which made the situation seem even more ridiculous. I have now returned to buying on the street, with all the difficulty, uncertainty, and expense this involves.
People often ask me what my husband and children make of it all. Aren't I worried about giving them "wrong messages"? My husband has been more than supportive throughout. He was as delighted as I was when I found something that really helped and he has valiantly gone on shopping errands for me. I have always been completely open with my children, telling them everything I know about cannabis and trying to explain why it is illegal. It's very confusing for them -- they can see how much it helps me, but their teachers bombard them with negative information. (Boys at their school have been expelled for smoking cannabis.) Far from being ashamed, I feel I am setting them a very good example of how to take responsibility for your illness, and how you should do something about a law if you think it is wrong and unjust.
Many find it difficult to contemplate using cannabis as a medicine, because it's ingrained in our thinking that it's someone else's job to look after us, whether it's doctors, drug companies, or politicians. If you do decide to manage your illness yourself by using cannabis, you will have to have the confidence to step out of line and break the law. I found early on that since you buy it illegally, there is no guarantee of its strength or purity, so it's bound to be a bit hit and miss. I would advise other people with MS if they decide to try cannabis to take it easy at first and gradually increase the dose if necessary. I don't much like smoking, but it is preferable to self-medicate this way rather than by eating or drinking, since it's much easier to know the right amount and when it will take effect. I would also advise people not to be worried about getting high, because it will probably just make them feel more relaxed and positive. Don't expect cannabis to make a dramatic difference to your disease, but it can be more effective and less problematic than all the painkillers, muscle relaxants, antidepressants, and sleeping pills that are prescribed for us. By treating myself with cannabis, I have finally gained some control over the disease that was making me lose control of my body. I'm less afraid of the future now.
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