I have only recently been able to begin experimenting with the CBD tincture but my initial results are incredibly encouraging!  Even if the only benefit derived is an increase in my ability to achieve sleep for longer than an hour or two at a time (which has been the norm for nearly 2 decades, constant waking and poor sleep) it would be more than worthwhile!  However, I am still hopeful and expectant that it may have other benefits, especially in relation to calming my overactive neurological system, with muscle spasm and constrictor. I expect part of the reason for the intensity of my pain is a constant state of muscle tension, caused by both chemical aspects of the disease and my unstable musculature and body alignment. It causes me to spend probably 3 of every 4 weeks bedbound in a state of torture, gripped by pain and unable to move or do anything.  Nothing has been able to touch it and muscle relaxers only make me sick and loopy but don’t ease the muscle tightness, certainly not enough to outweigh the negative side effects.

This treatment is my only hope for relief in this area, and so far it seems it will help. My concern is how much I’ll have to continually increase the dosage in order to outpace the adaptation to it. The dispensary told me that will be a factor. I have been tested genetically to have resistance to opioid medications, which partially explains why even with large doses of Oxycontin, etc, I have very limited relief. Hopefully, the tincture will be a way to get around the lack of efficacy of opioids, and also help me avoid their terrible side effects, including constant opioid-induced constipation and many other problems.  This would be a more natural, less harmful solution; the only inhibitor is cost, which is why this aid is so important and appreciated!

This financial aid of $150 per month has been the difference between being locked into the old methods of treatment that have been ineffective or under effective and trying new solutions.  It allows me to purchase CBD tincture to explore other ways to alleviate symptoms that cause such tremendous pain and disability. I am only able to get out of bed a couple of days per week around the house, and if I’m lucky, to get out of the house for errands approximately one day a week for 2 or 3 hours.  This is not enough window to accomplish even the basic tasks to sustain life, even one as sedentary as mine. I am always behind, always struggling and letting things fall between the cracks. It’s stressful and devastating. If the tincture can give me even hours of function, it’s well worth it. Anything more is gravy!!

When you have as little functional time available to you as I do, and have for 2 decades now, it takes a huge toll on yourself but also, and more so, family members.   My beautiful daughter, Allegra, was only four years old when I was injured and has gone through so much with having a mother who was around but not really around and able to do things. She had become my caretaker, and that’s a role she cannot handle any longer, it’s taken a terrible and devastating toll on her.   She is the second victim of my injuries and subsequent illness. My mother, 85 years of age, having lived through bombings in England during WWII, even having her school bombed into oblivion at age 10, has been more affected by my prolonged, extreme state of illness than anything in her long, not always easy life! It means everything to us, and others, friends and community, who are affected, inconvenienced, saddened by my suffering.  It takes a village to raise a child, but also to care for a sick person. The more that burden can be reduced the better for everyone!

Sheila’s story