Twice recently people with whom we have been corresponding went to Europe to have stents put into their veins with the idea that CCSVI was a contributing cause of MS. When they first returned they proudly announced that they were better, then after about a month, they each have written to us that they are worst than ever. Now, I am no expert on CCSVI or the particulars of the procedure or who is best served by the operation, this is just a cautionary note. I know that there are also many people who have apparently been helped as well.
But, the success or failure of the procedure is not what I want discuss, rather the placebo effect which seems to be so srong in MS treatments. The placebo effect is the resulting improvement in a person no matter what the medication given, if they believe it to be effective. There have been many research studies where the subjects are given plain sugar pills, with positive results in improvement in healing or curing. I believe the statistic is the placebo effect accounts for something over 20% of improvement. It is clearly a matter of mind over body or that our minds and attitudes can influence our body's condition. It shows the power of belief and a positive attitude.
Now we know that the diet works for most people, and it holds over time. I just realized that I am now at 13 years on the diet with no relapses. But, if you can have an added boost by using the power of the placebo effect, it may make recovery a little faster.
The other matter I wish to discuss is to again warn all the people on the diet not to get too thin or weak. It is important to maintain a healthy body weight and to stay strond. The diet works on the prinicipe that we weaken the disease by not eating the foods that cause symptoms and at the same time strengthen our bodies with good, health enhancing foods. The diet is not a cure, but a treatment which can so weaken the disease that there are no symptoms, even to the point that the person can go back to eating everything, carefully. But the potential for MS is there. At the same time the diet weakens the disease, the body needs maximum health. Witness how sickness, fatigue and stress--when the body is weaker--can cause symptoms. So, eat to keep a good weight and strength.
The illness of MS moved into me slowly, intermittently at first, taking sensations from me, then giving them back. I felt at the mercy of this mysterious illness, not knowing its name or what it was after. Then MS announced itelf with full force, taking from me briefly my legs, the very foundation on which I stood. Though it was only for a minute, the possibility was always there. I was no longer safe and secure in my body.
Then as the MS progressed, it took away from me my ability to move freely in the world. Over time, I was confined to an ever tighter box; my world and me became shrunken and small. I lost my energy, my vitality, so that I could no longer live a full day or do what I was used to doing in a day. Time and energy became precious commodities that I had to dole out in small measure, always making a choice of what meant the most to me. My emotions were out of control and worse any show of emotions gave the illness more power. I had to learn serenity, to dampen my emotions. My thinking was becoming dull, words and thoughts escaped me as I tried to speak. It felt like I was less of a person, in a small box without time or energy. I had no power or control, anything could be taken from me at any time; I had to learn acceptance of that or I would be forever in a rage.
Alone in my house, I lost my job and my identity as a worker, I lost my ability to function so that I lost my identity as a doer or a competent person, I couldn’t go to my daughter’s activities or pay much attention to her so I lost my identity as a mother, I saw few people and so lost my identity as part of the community, I stopped talking to my friends not wanting to just share my bad news so I lost my identity as a friend. I was just me with no actions, thoughts or feelings to distinguish myself. I struggled with the very existential question of what value was I? The only answer I could find that allowed me to go on was that I was of value to God, without having to be anything in the world of man. I just was and that was good enough, I had to accept this stripping down to nothing and feeling that I was still good and of worth to be able to go on.
Just as illness left me powerless, diminished and stripped to the very existential being, healing built me up, empowered me and gave me a sense of being able to do great things, possibilities opened. With control, I ate what was healing and shunned what was harmful to me, I took over the agenda, instead of a victim, I was a fighter. I regained my sense that I could do as my body responded to my healing diet and my working it in exercise. I had power again, power over the disease that before seemed to have full power over me.
I pursued a spiritual path at that same time, finding truth and comfort in a higher being, in a sense that there is purpose and meaning to my suffering. At the bottom of my experience, I sensed love for who and what I was, stripped down to my essence. I held to that and have been seeking ever since to know more of that divine love. In this quest, I have found humility, faith, trust and love. Illness helped me grow, so it was not in vain. I ask if I had not healed would I still be able to see illness as a gift? I hope that I would, for the illness lead me back to myself and to the powers above.
Now, life is more precious to me and I am more grateful for whatever I receive. I don’t expect so much, I accept what comes along. Cancer followed several years later and I could accept that without anger or much angst; this is life, suffering has meaning and death is not the worst thing that can happen. I healed again from cancer, now 7 years later, I am healthy and fully functioning. It is a gift and I try now to be a person who each day bestows a gift to another.
I guess the title says it all. It is very easy to get so involved with the foods, that the importance of rest and sleep is lost. Sleep gives our bodies a chance to repair and recover as do rest. When I had symptoms, I noticed that they got worse as I pushed on over what I should have and then if I rested, the symptoms would subside. Actually, it got so bad, because I was stubborn and wanted to keep going no matter how my body was doing, that my body would stop functioning (multi-system failure) and forced me to rest or sleep. I learned the hard way, not to push for though you may get more done in the short run, you slow your recovery down in the long run. So, I forced myself to rest or nap every afternoon.
Now that I am recovered, I don't nap or rest during the day. But I do try to keep in mind the lessons of MS, be kind to your body, don't push it too hard.
Again, good luck to all of you on your healing path.
I would like to share a little of Jeff's experience with the MS REcovery Diet, for which I have his permission. He contaced us by e-mail over a year ago with questions about the diet. We next heard from him just lately. His concern was that he had gotten too thin and wanted to know how he could gain weight.
I discovered that like many people on the diet, Jeff had done well and experienced a good recovery from his symptoms. He stuck to the conservative version of the diet religiously, afraid to vary for fear he would lose his progress. Now this is good to an extent, but he was limited in foods, perhaps more than he need to be. He needed to test foods to see if he could expand his diet to include some more calorie rich foods. He is a very tall man, 6'5", so he needs to eat a lot to maintain a good weight. The diet challenges him more than others in this respect.
I suggested that he experiment to see if he could expand his repetoire of foods. He did, eating steak one night and eggs the next. Some symptoms returned and he panicked. I reassured him that if he went back on the diet, these too would subside. After five days, he had returned to his previous level of health. It was an important lesson to him that he can go off the diet and experiement to see exactly which foods are his triggers and perhaps be able to expand his diet.
So, again, I am suggesting that after you have shown improvement and know your body, try foods out. Legumes are not as often triggers, so try those as they are calorie and protein rich. Don't be afraid, by experimenting and testing foods, you can most likely expand your diet and you will learn more about your body and how MS works in you.
I have written this before, but it bears repeating to help those just starting out on their recovery. The keys to recovery seem to be:
1. The diet is not a rigid set of rules, rather a set of guidelines to work with until you determine the specifics of what foods cause you problems and what foods seem to help you. Each person is unique in the trigger foods that cause symptoms in this highly idopathic disease. In a culture where medicine prescribes one specific medicine to each person with a certain disease with an expectation that all will be cured, this concept of a unique solution, within certain parameters, demands that we look at our bodies in a different light.
2. To find your specific dietary program, it is necessary to listen to you body, get to know its unique reactions and to get to know your MS. Do not be afraid to experiment with different foods so you can expand your diet as much as possible. You may get a flare in symptoms, but if you have already experienced so recovery, you will know these are short lived. From reports, the people who seem to do the best in recovery are the ones who tune into their bodies and are not afraid to test out foods.
3. Recovery is not just a matter of diet; fatigue and stress are also critical components of the disease. It is not a matter of just changing how you eat, it is also important to consider how you live. Does it work for you? Do you have time to rest and relax, reflect on your life? If not, you may need to make some changes there as well. Notice that in each recovery story a spiritual aspect is mentioned in a positive way.
4. Get outside and exercise, but not to the point of over taxing yourself. Vitiamin D is best gotten via sunlight. Use your body, it makes the nerves work, but again there is a balance. If your body is over taxed, it hasn't the energy to repair and restore functioning.
5. Give yourself time to heal. Improvements can be measured in millimeters oftentimes, but they add up to big changes over time.
6. Pay attention to your digestion. Digestive health is crucial to healing as we write about in the book.
7. I don't know how exactly to put this, but I realized how much easier it was for me when I stopped being afraid of the disease. My fear fed my stress which fed the disease and I obsessed about the disease; it was on my mind all the time. That is counter productive. Now in my mind, the ferocious lion of the disease MS, is like a house cat, which follows me around, but I don't have to pay too much attention to it. So, if you can think of other matters, imagine, create, it will take some of the power away from the disease.
I hope this helps, again, we are very gratified by all the healing stories we hear.