Making Sense of Multiple Sclerosis

 

I was diagnosed with multiple sclerosis in 2006. Although my life has taken many twists and turns since then, I’ve kept my chin up with my own brand of spectacularly relentless optimism.

Recently though, after taking our first family vacation in two years, I was feeling a bit down. Prior to this trip I hadn’t been well enough get on an airplane and travel much, so my husband and the boys had been vacationing without me, which I fully supported. I don’t think it makes sense for others to be deprived due to my limitations.

However, when we returned from our trip, I wasn’t feeling awesome. Some of my symptoms had increased and I felt somewhat anxious about that. I felt grumpy that instead of working out to feel good, I was digging myself out of a hole. It doesn’t really make much sense on a rational level, and yet, a lot was stirred up within me. I think travel does that to many people whether we’re dealing with chronic health issues or we’re in perfect physical shape.

In any event, to clear my head, I went down to our basement to have some quiet time. I wanted to move and stretch and do gentle yoga. As my mind cleared and my anxiety died down, I was filled with new feelings that were not familiar to me.

In my typical world outlook, everything has a reason. Even the smallest events have meaning, and my life is filled with purpose. But, for a few minutes, I let that view unravel and allowed my mind to wander. As my thoughts moved around, I wondered, what if I have this illness for no reason at all? What if I’m sick and it simply sucks? What if there are no lessons to learn? What if this isn’t supposed to make me a better person? How can I make any sense at all of the damage this disease has done to me, and by extension to my family?

For a few short minutes I let myself feel the weight of having been diagnosed with this serious neurological condition that we refer to as multiple sclerosis. I let myself truly understand the reality of it. From that I finally permitted myself to utter a silent complaint, and I fully came to terms with the fact that I don’t enjoy dealing with the limitations, complications, and baggage that hitchhike along with MS. The worst thought of the bunch swimming through my head? What if I don’t get well? Ever?!

In those few minutes, with all of those questions splashing around the ocean of my mind, it was the perfect time to stop thinking and let the tears sprout from my eyes and splatter across my face.

Then something happened. In letting go of my iron-willed optimism I was able to grieve a bit, and it felt good to be sad. It felt congruent. I had let go of some stubborn determination which was covering up anger and more than a touch of perfectionism. I had admitted to myself, that I don’t like this. In fact, I don’t like any part of it!

I’m totally ready to let go of this disease if that can happen. I work towards that end every single day in everything I do, from carving out enough time for sleep, to eating well, and getting just the right amount of exercise, along with prayer and affirmation. At the same time, I’m also ready to deal with whatever comes my way.

I’m relieved that I’m no longer forcing myself to pretend that I’m ok with the burden of this disease, because there’s nothing ok about living with a disability like MS. It’s awful for me, in ways that I will not go into here. It’s equally rough for my husband and children. They are tasked with the incongruity of watching a loved one suffer from a major illness, while carrying on with the normality of their everyday lives.

Comments

244 responses to “Making Sense of Multiple Sclerosis”

  1. Hi Elana….
    I know this is an older blog post and I hope you are doing better now…I also know from reading about you that you engage in MANY healthy behaviors to help you achieve the best health you can….this is not about me and my son’s “story” but I want to offer you one more option. This link shows my sons recovery from serious chronic illness with the help of Drs. Goldberg and Tener. http://www.goldbergclinic.com/blog/2015/11/21/a-hard-won-recovery-from-crohns-disease.

    Their focus is on rebuilding health rather than “treating disease”….Jon had been through every drug they make and multiple surgeries ( as you can see from the picture he has no belly button due to a huge gut surgery) for Chrons…..these Atlanta Docs are the real deal and help you find the source of your problems and teach you to “get out of the way” so your body can heal itself.

    It is so worth your time and effort to talk to them…..let them know I referred you…

    all the best.

    Cindy Mueller

    • Cindy, thanks for your comment. I’m so sorry to hear about all that your son went through. The medical system can be so far off in dealing with autoimmune issues. Thankfully, I’ve been seeing one of the top Functional Medicine doctors in the country since 2002. He has been of incredible help on my journey and I have learned so much from him :-)

  2. Hi Elana
    I have a question on MS diets I was diagnosed with transverse myelitis then MS in 2005
    I immediately started the Swank diet Dr swank says no red meat and keep sat fat 15g or less
    I am confused on the fat aspect of the keto paleo vs swank
    Which is best ? I keep going back and forth
    I seem to have no fat in my head but I read about keto and paleo which includes fat
    My symptoms are minimal mainly sensory unless I’m in heat and humidity then I stumble a little until cooled off
    My question is .. why do Dr Swank and dr jelenik both go so low on fat intake
    Yet paleo and keto are high fat

    Thank you so much
    I love your site and have ordered your cookbooks!

    Clare

    • Clare, first thing is to remember that we are all bio-chemical individuals and different things work for different people. A low-carb diet works super well for me so that is what I follow. Also, Swank created his diet decades ago when low-fat diets were very popular. But, most important is to follow whatever works best for you :-)

  3. Hello Elena: I am trying to figure out what is wrong with my body. When I try to sleep I am constantly being woke up with pain in my joints and muscles in both legs. I also get electrical shocks on the back side of my right leg, only in one spot around the knee area during the day time. Do you think this might be MS? I’m 63 yrs old. Thank You

  4. Hi,
    I was Dx in 2002 and luckily I was able to keep this disease at bay through a divorce, raising a child on my own, 2 job changes and various other challenges until this summer when it attacked again. Now I have a numb left hand that seems to be permanent.
    Although I have eaten healthy all this time I am now 45 years young and I am seriously researching all these various diets and I don’t know which ones are beneficial or why. there is the keto,Swank , no grain no gluten no dairy. Can you please enlighten me as to why the no grain no gluten seems to work best for you? do you eliminate dairy as well?
    I have purchased your cookbooks and made numerous recipes from them that are extremely delicious and crowd pleasers no matter who the audience is! Thank you for all you do!!
    Looking forward to any advice or direction you can provide on the way you eat and why it works for you.

    • Jennifer, thanks for your comment, I’m so sorry for all that you’ve been through but happy to meet you here. I found that a grain-free diet worked for me, but we’re all biochemical individuals so it may not be what’s best for you. Grains really irritated my gut and giving them up in 2001, along with corn and potatoes has helped me tremendously. One trigger that’s just as big for me as eating foods that don’t agree with my body, has been EMF’s. Here’s more on that for you:

      https://elanaspantry.com/green-house-almost-killed/

      I hope you’ll keep me posted on your progress!
      Elana

      • Thank you so much! I have followed you for years here in the shadows as I too take LDN and have since 2004 and found you while googling it one day. It is the only medication I take for my MS besides supplements.
        Thank you for the information I am off to read into that further but funny enough this attack happened right after my daughter had purchased me a Fitbit with a heart rate monitor for mother’s day. I removed it as soon as the numbness started but it had already settled in by that point but I do wonder if the EMF’s are related to this attack.
        Thank you!!!!

        • Jennifer, that’s great that you removed the Fitbit. Like me, that device may be what tipped you over the edge and if you are in an environment that has low-levels of EMF it still may be too much for you to tolerate. Around 5% of the world population is EMF sensitive. If this number was just a bit higher EMF sensitivity would be considered an epidemic. That is, if it was recognized at all. Given that the telecom industry spends close to $100 million dollars per year alone on lobyying our elected officials it is unlikely this recognition will take place. Glad we are chatting and let’s stay in touch :-)

    • This is beautifully written. I was diagnosed in 2013 and work with my anger towards the illness every day. Recently, my therapist suggested I write a letter to MS. I did and there were more four-letter words than I can count. Many of the same things you wrote above, I wrote. Thank you for sharing your tips of health and wellness and your struggles with acceptance. You are helping people. In fact, my physical therapist recommended your website. I feel less alone the more I connect with others in my position. I’m not prone to online comments, but I wanted to say thank you for sharing.

      • Carolyn, thanks so much for your beautiful comment! I’m so lucky to be able to connect with people like you here. I hope you’ll keep me posted on your progress :-)

  5. Hi Elena! I was diagnosed with MS in 1993. I’m 68 now and must say that this disease has no mercy. I have strived to be as healthy as possible for a very long time. Recently I had a very low white blood cell count and thought I might have cancer. i don’t have it but rather some sort of virus was/is responsible for my low numbers. I have been following a Paleo diet closely and do need to continue to find “The Diet’ change that will bring me optimal health. Do you have any suggestions? I have visited your page before and am thankful for your recipes! I’m planning on making the Zuchinni Bread this week. My daughter is a type 1 diabetic and I have made her Keto Bagels recently that she so enjoyed. We will certainly enjoy your recipes and TY for sharing your story! Heart Hugs to you

  6. Thank you for sharing this! Absolutely Spot on! It’s awful for me too, no matter the outward appearance and positive attitude. It has been since 2005 when I was 27 and it’s nice to acknowledge it from time to time which is something I recently learned as well. It can be such an inward disease and impossible for someone not going through it to understand. I have found embracing the weight, loneliness and reality of it all, occasionally in those quiet moments with some tears, is extremely refreshing and empowering.

    Also, thank you for all you and your husband do for our Colorado Community!

    • Jeremy, you’re very welcome. MS is not easy to deal with, but I’m glad we are on this healing path together.

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