10.29.2016

My Big 8 (for living with MS)

In my immersion (almost a year now) in information about MS -- and here I'm talking academic journal articles featuring MS research, books about the disease, social network stuff, and several conversations with doctors -- I get the sense that there are two main ways people tend to think about treating multiple sclerosis: with drugs and with diet.

DRUGS & DIET

The doctors I've met with just want me to take drugs, and everyone "alternative" seems to be recommending a new diet. I get that, which is to say that I think I'm coming to understand those two perspectives. But I'm reluctant to think that everything important in terms of the treatment of MS can be boiled down to drugs and diet.

MY BIG 8

For nearly a year, I've been exacerbation free. This means no new symptoms, no episodes, no flare-ups, and no additional impairments. It's only been under a year, but I think (and believe) that this "good year" has had something to do with what I've been doing. Yes, I've attended to my diet. No, I haven't gone on any medications for MS. But I've also attended to a whole host of other things.
These are the eight things I've been doing/attending to in summary form.

1. STRESS REDUCTION

For me this has meant restructuring my job away from the more stressful activities (administration) and toward the things that don't stress me out (research). It's also meant reducing stressors such as not getting enough sleep, not eating irregularly, or even getting a sunburn. Since learning I have MS, I've also learned to recognize stress in some pockets of my life where I was previously comfortable allowing  stress to lurk. Regular patterns of daily life, I think, help reduce stress -- and I've begun to follow those patterns, weaving my life around a stable structure.

2. VITAMIN D

Even my pill-pushing neurologists agree that low vitamin D levels are not good for people with MS. When I was first diagnosed with MS, I got my D levels checked (a simple blood test I ordered online) and mine came in under 20 nanograms/milliliter. That's low, which is not surprising since I've spent most of my adult life avoiding the sun due to a history of skin cancer. So my neuro recommended I get more D in supplement form, and my levels have come up. Getting more sun is an option for some, but I find the supplements are more easily regularized.

3. EXERCISE

I've exercised regularly my whole life, so I didn't need to "start exercising" or anything like that when I learned I had MS. However, I did start exercising differently. For me, this comes back to what I said about stress. Whereas I used to engage in stressful forms of exercise (big workouts sometimes; extreme physical adventures at other times), I now workout in very patterned and predictable ways: I walk just under 6 miles every day, and I do strength training (a patterned workout) three days a week. I would not want to underestimate the vitality that comes from such a routine.

4. REST

Again, this comes back to stress reduction in some ways, but since learning I have MS I've slept a lot more. I now regularly take naps during the day (sometimes even for just a few minutes), and I try to get to bed by 10 every night. This early bedtime (it used to be closer to midnight) increases the likelihood that I'll get 7-8 hours of sleep each night, and I like that. Sometimes, MS demands a nap or more sleep. But this patterned and planned approach to rest is my attempt to be a bit more pro-active, banking rest ahead of what can be my body's desperate need for it.

5. PEOPLE

My relationships have been incredibly important to me, especially since learning that I have MS. In people I find support, recognition, questions, challenges, and accountability, and though it's a cliché, "I couldn't do it without y'all." I've also found that various online communities have been great places to get and offer support, so I'm glad to have stumbled upon other MSers online. For me, one of the biggest challenges has been getting to a point where I accept this disease; talking with people has been the best way to make it real and get to(ward) that goal of acceptance.

6. INFORMATION

Multiple sclerosis is a complicated disease, and some key things are not entirely agreed upon in the scientific/medical community: namely cause and treatment. Of course, there is a good deal of research and knowledge, but no "one clear cause" or "one clear treatment." Perhaps because of this, there is as much variation in the non-medical community of alternative-medicine advocates. Some will tell you that MS is caused in the gut, while others will tell you it's a result of environmental toxins. While it's been hard to sort through so many voices and ideas about MS, I do think this work of taking in information has been valuable. I've found some consistent messages, for instance (Swank leads to Jelinek leads to Wahls), and that's reassuring. Particularly when meeting with my neurologists and opposing their recommended treatments, I've found information was essential to maintaining my well being.

7. STAYING COOL

Whereas I used to love to sweat, now I avoid it. Whereas I used to enjoy a pile of blankets at night, now I go for a thin sheet. I'll never take another warm bath again. I even avoid hot showers, and I feel much better because of it. I know that not everyone with MS struggles with the heat, but I know I do -- so staying cool has been a big plus. I've also invested in some "cooling technologies," and those seem to be helping.

8. DIET

And the last thing I'll mention is diet, because I truly believe that it comes last in importance after everything else. I've shifted to a blended adaptation of Wahls' suggestions, following a  strict regime of eating raw fruits and veggies, lots of omega rich oils and foods, and nothing processed and very little cooked. It's a low salt diet, as well, and one that works to vary foods by color and nutrients while still tasting good.

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