Taking better care of yourself does not have to be a daunting task. It is a game of experimentation. Baby steps of trying out one thing and then the next. There will be setbacks and disappointments when a hoped for treatment or self-care regimen does not work for you, but with experience, this just becomes part of the process. A journey in learning your particular body in a very intimate way.
Since being diagnosed with multiple sclerosis four years ago, I have tried a number of diets to get my body to its optimum functioning. Many started off as promising and then, sometimes suddenly, no longer seemed to work for my body. Recently I was all fired up about the Wahls Protocol. I was not seeing the results I wanted being on the second stage of the diet, so after several months I modeled the diet Dr. Wahls is on herself, Wahls Paleo Plus. And then I felt relapse symptoms coming and I developed this crazy chronic migraine. The migraine has lasted a month now. I experienced some vision disturbance and a loss in sensation on much of the right side of my body. But my vision is back and the rest seems to be clearing. My hunch is that the large amount of coconut prescribed on this diet, a common migraine trigger, may not react well with my body. So I have dropped back down to Wahls Paleo and am experimenting with a possible food sensitivity by cutting out coconut (I tapered off of it over two weeks.)
This has been my biggest disappointment to date. There is so much positive talk about the Wahls Protocol. Dr. Wahls has improved so much herself. And so many other people with MS have too. But, like with everything, and particularly with MS, I have found that one size does not fit all. Where I have found solace in my disappointment is with the acknowledgement that Dr. Wahls crafted her diet by experimenting for years with what her own body responded well to. There is a science to what foods to eat and why but as far as what one body needs that another may reject, that is individual to the person. And I have also found that if there is an exception to the rule, I will be that exception!
I was tempted to go off the diet altogether and binge eat corn chips, rice cookies and grapes but the reality is that I cannot be bitter or resentful towards Dr. Wahls or my own body. My body is telling me something and I may not like what it has to say because it is “ruining” my plans, but it is yet another reminder to honor my body and honor my journey. This diet of eating 9 cups of vegetables a day is bringing me health and vitality I have never experienced before. I wished I felt better currently but I fed my body junk for so many years, I cannot expect that I can revamp it in just a few months. This will be a process just like it all is.
Maybe my body can’t handle coconut right now but will be able to after a year on Wahls Paleo. Maybe it is not coconut at all and was some other undiscovered trigger. Little by little I will chip away at what works best for me. I’d love for your support on my journey and I would love to offer you the same! Please leave comments below if you have experienced anything similar or have advice for others like me.
Yoga is for everyone. With so many types, you can find a type that resonates with you. For me, it’s Kundalini Yoga. I am in need of physical, emotional and spiritual healing, and practicing Kundalini Yoga provides that for me.
In the West, when we hear the word “Yoga,” we often think of physical postures. Lots of stretching and sweating. If you have never really enjoyed an exercise routine, the mind instantly decides, “Yoga, that’s not for me. That’s for flexible types.” And sure, many yoga classes in the U.S. are comprised of thin, spandex-clad people who are tackling yoga like they may tackle the rest of their day, with a go hard or go home mentality. This is so prevalent that now there are classes and DVDs labeled “Yoga for the Rest of Us,” as if Bikram is the standard and the rest of us need to somehow dumb down yoga so that our inflexible and out-of-shape bodies can perform it. So not true! Again, it is worth repeating, Yoga is for all of us. We just have to find the Yoga that makes us feel like we are coming home.
For the last month my Multiple Sclerosis fatigue has not allowed me to do much physical yoga. If I over-stretch or do a repetitive motion one-too-many-times, I don’t recover for a week. So, instead I have taken on a half hour meditation to do daily, one that was emotionally too draining for me to do a year ago. Now, I may be weaker physically but I am strong enough emotionally to do this aspect of yoga. I can also do long breathing exercises, which helps me with my stress response. I do the few simple physical movements I can do. And I feel so much better after I have done them! I make sure to include deep relaxation because that is just as important as the exercise component of Yoga. And on those days where I am so exhausted that I can’t get to any of it? I VISUALIZE. The Mind Body Connection is a real and powerful thing. Try it. If you are unable to complete any stretch or pose that you would like to be able to do, but that your body won’t allow or you know it’s best not to do at this time, visualize and your muscles will still fire. You will still be using the neuronal pathways to perform this function even if it looks like to the outsider that you are doing nothing.
Bring Yoga into your life any way you can. Get some DVDS and books at the library. You can find Kundalini Yoga exercise sets (Kriyas) and meditations all over the internet. Here are a few of my favorite sites:
Joining a Yoga community was an invaluable step for me. So when you have the physical strength to get yourself to a studio, do it. Even if you spend the whole class laying down and visualizing, you are being held in a sacred space by people who instantly care for you. And many studios, such as Kundalini Yoga Boston, offer discounts to clients with Multiple Sclerosis. Furthermore, the National MS Society will reimburse $50 a year towards fitness and wellness classes. It may not be much but it will get you into the door and may be the very excuse you need to come home to yourself.
My fascination with cortisol continues. A month or two prior to taking IV Steroids, I did the Adrenal Stress Test Panel. It is a test that is done by collecting saliva samples at four points throughout the day. From this, you can see how much cortisol your adrenal glands are producing during the day. It cost $120 and my insurance did not cover it. If you are curious to see where your body’s stress response is at but do not have the money to cover the test, you can begin to pay attention to what your energy levels and responses to stimuli are at these times: 8-9am, noon, 4-5pm, and 10-12pm. For example, I was not surprised that my cortisol levels were above the normal range in the morning (I wake up amped, usually after having vivid dreams for several hours), dropped to their lowest levels at noon (this is usually when I am desiring a nap and when I decide to go nowhere if I have not already left the house), and then proceeded to climb back up through the evening and late night (why it is harder to wind down and go to bed the later that I stay up.)
Why is it important how much cortisol you produce during the day? Well, it is your stress response. So if your cortisol production does not follow a circadian rhythm (of producing the most cortisol in the morning, still within a normal range, and then steadily tapering off the rest of the day) then it is an indication of adrenal fatigue, which is a further indication of chronic stress. I might argue that if every person with MS got their adrenal levels checked, a high correlation of adrenal fatigue and chronic stress would be found. In America, we often call this Type A personality and I have seen this in a lot of MS literature- that there is a high correlation of Type A personality and MS. But what makes us Type A? For me, I like to have everything just the way I want it when I want it. I build up grand stories and expectations and do not handle the disappointment well. Since I do this throughout the day, I create a lot of stress for myself. And it is all about little things or things that actually do not exist. So chronic stress has nothing to do with whether you face trauma and tragedy every day, it’s just the way that you deal with life. And if you didn’t have chronic stress before MS, dealing with a chronic illness can cause it.
After meeting with my functional medicine doctor, he directed me towards evening out my cortisol levels during the day, NOT lowering them as I was previously touting in a blog. I started taking Coenzyme Q10 100mg three times a day with meals (with lechithin or some other form of fat in the pills), an herb called Rhodiola Rosea twice a day inbetween meals (Gaia makes a variety) and straight licorice tea throughout the day (Traditional Medicinals is a great brand.) For long term adrenal support, he recommended the supplement Adrenal Response from Moss Nutrition. BUT, he emphasized that none of this explains how I got to the point of adrenal fatigue and herbs would not get me out of it. Indeed, the yoga and meditation I do has a greater impact on stress relief than anything else. If you find that you still run hot and tend to get riled up easily, it is okay to throw in some herbs that calm the nervous system. Recently I have used tinctures of passionflower and kava kava. Kava kava can affect the liver so depending on what disease modifying MS treatment you are on, you should be careful with this and run it over with your doctor. On the flip side, drinking coffee or anything with caffeine only ramps up your cortisol production and your nervous system.
A lot of us experience MS fatigue and a lot of us are on prescription medication for it. Many have grown accustomed to dealing with it as a primary symptom, but what if we could get our adrenals back up to normal levels o
After writing my last blog, with the money for Glutathione infusions dried up and the creeping back of relapse symptoms, I decided to do the round of IV steroids that my neurologist had been encouraging me to do for months. I do not know if it was the right decision. I do not know if there is such a thing at all but I decided to do it. It is not clear yet if it did any good, it made me feel lousy during, I feel even more lousy now, and yet I am grateful for the whole experience.
That is what has gotten me through these last two weeks - life just is what it is. Whatever is happening right now is happening, no matter what we think or do about it. And we never know what is going to happen next. We don’t have to assign any of it a good or bad label. It just is.
With this as my mantra, I have felt more empowered to get to know my body in this state, rather than retreating from the pain I am experiencing. I have had a chronic never-ending migraine for the last 18 years. But when the pain level shot from a 7 to a 9 on steroids and then an 11 (yes, I reserve the right to go above a 10 on the pain score) as I dropped off the steroid cliff, I wanted my neurologist to fix it. When the solution was more steroids (and it was now my fourth day being off them), I decided to go a different route- one that feels right for now.
Over the last two days I have been able to bring my migraine and other steroid withdrawal symptoms down. I am managing my pain and mood with an eye on the impermanence of it all. I did my own research online but I was not able to come across much in the way of treatment for corticosteroid side-effects or withdrawal symptoms. So I researched the root- what are these steroids and what are they doing? What I found made me cry out- “Of course!” Corticosteroids affect your cortisol production (your fight or flight hormone the adrenal glands produce), making your heart race, amongst other things. You see, for the last two months I have been working with yoga and meditation to improve the functioning of my adrenal glands, to produce a more even amount of cortisol in the body throughout the day. How odd it was that I would inject my body with a week’s worth of artificial substance and then not know why I was feeling the way I was!
Feeling empowered with this new information, I set out researching how I could keep my cortisol levels more steady and gradually bring them back to a more normal baseline, with the idea that this could be a natural way of tapering off steroids and could reduce my pain. With my cortisol levels already being high, I looked up what lowers it: Magnesium, Vitamin C, Phosphatidylserine, Omega-3 Fatty Acids, Holy Basil, Zinc, dark chocolate, Ashwagandha, Passionflower, and Dong Quai. This is where I started because these were all things that I had on hand. If you look up more herbal ways to bring down your cortisol, there are more herbal ways. I also incorporated more meditation, rest, gentle stretching and slow drinking of herbal tea. Anything that brings your stress level down brings cortisol production down. Rest rejuvenates the system. I had to put even mild yoga on hold. It is too much for my body right now and any exercise leaves my body feeling like it is bruised all over.
The benefit from this inquiry and research is that stress is an ongoing issue for all people with MS. Some of us can remember the stressful episode that spurred on our illness- I remember mine! I will be using what I learned from this steroid treatment to get my adrenals and cortisol levels back in healthy order (as well as submitting a question about this to our experts for this website to learn even more/get their opinion) so that I am better able to handle the stress and suffering that comes with being alive.
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Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
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Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.