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.
Susan Lewis says
Elana I have been an RN for over 35 years and have seen hundreds (at least) of patients during this time. From my nursing point of view I would like to suggest to you that your MS may be the catalyst for the wonderful work you do. For example, would you be researching and sharing info about the keto diet? Would you have started the paleo blog, and written cookbooks. It is impossible for you to know how many lives you have touched and the inspiration you have given to others. We are all driven by some source–in your case it may be the desire to have normal health. But I can say with conviction that the ability, the desire, and the dedication to inspire and educate others is a noble and rare gift. Most people don’t have it, but you certainly do.
By the way, I’m sure you have researched this, but have you considered stem cell treatments? If not, please feel free to email me privately because I know quite a bit about this field and I would be happy to share my info with you.
Susan
Elana says
Susan, your comment brought tears to my eyes. Thanks for your kind words :-)
Holly says
I would love to hear more from you, Susan if you care to share. I have a friend with MS and she is looking into stem cell treatment. My email address is holly1257@aol.com. Thanks!
Susan Lewis says
Well Elana, as someone once said to me, the truth is the truth.
Sandra says
Elena, I’m sorry. I will no longer take this body of mine for granted… unfortunately, I have your butter cookie recipe memorized, ?
Elana says
Thanks for the great comment Sandra! You made me laugh :-)
Barbara says
Wonderful post from your heart. It helps many of us suffering with something. I have Serratia Marcescens, that they can’t get rid of with antibiotics so I’m living on them every month or 2, as it comes back once I stop the antibiotic.. Not sure what my future holds. I’m trying everything from essential oils to changing probiotics.. It all started with allergies and sinus surgeries. I have to keep myself up, in moods, when sad at missing many grandchildren activities. I give you my hugs and prayers. It’s not easy. You are a wonderful person and I love your posts and recipes. Thank you from the bottom of my 65 year old heart.
Elana says
Thanks for your amazing comment Barbara. I’m sad we’re missing out on things, but happy to know we are on this healing path together :-)
Carol says
Barbara, I have no clue about your condition, but have you researched colloidal silver. It’s apparently an amazing antibiotic. I apologize if I’m the 1,000th person to mention this. I have used colloidal silver in a nasal spray – Argentyn 23. I hope your healing speeds up soon.
Jennifer says
This so resonates with me…. coming to a peace while lamenting! That is a journey I am learning to travel. The past few years I have so appreciated the Psalms; find myself there often. I think acceptance of diseases, doing all one can in one’s power to battle them- all the while not seeing ” that you feel amazing if you follow all these prescribed diets and regimens”, and then truly being saddened by it all is an emotional roller coaster. I think we mature, grow in empathy and age! Think you for your site; have followed you for years. Appreciate your vulnerability in this.❤️
Elana says
“Coming to peace while lamenting!” That is so well said Jennifer. Thank you :-)
Linda says
Have you ever consulted a functional medicine specialist such as Dr. Mark Hyman at the Cleveland Clinic?
Elana says
Linda, I have been seeing a functional medicine doctor who is one of his mentors since 2003 :-)
Diana Z. says
Thanks Elana for putting into words my feelings too! I am sorry you carry the burden of MS. I, too, carry a burden of a very rare lung disease which prevents me from participating in certain activities with my children and husband. I do the best I can to stay positive. But I have a question for you… how do you manage it all? Meaning, family, home, work, exercise, eating right, meditation? I just don’t seem to have enough hours in the day that I have energy, so the things I should be doing for me don’t get done. I have a home, husband, 2 kids, a dog and a small business. I am so tired in the evening (part of the disease). Any suggestions for managing all of this are greatly appreciated! Thank you again.
Elana says
Diana, I agree, it’s quite a juggling act! As my boys have gotten older (at this point they’re 16 and 18) it’s all gotten quite a bit easier :-)
Jacki says
Thanks your for your words of honest self-reflection. I’ve had Fibromyalgia/CFS for 16+ years and I identify strongly with them. First it’s the fight feelings ” I can make myself well and I’ll try harder and harder until I force it to happen. I can find the way to heal” but underneath lies all the sadness and grief about “loss of self, loss of identity’, and feelings of being betrayed by one’s body….it’s not dependable nor predictable. When the feelings of sadness and grief surface and the fear of what if’s ( I don’t get well, If I can’t, If I never…) then, like you write, comes the acceptance, “I will do what I can do to be well, and it will be what it will be and that’s ok”. It’s a surrender of control as well and as you write “letting go”. Therein the healing lies and one can flourish in life with whatever difficulties come. Thank you for all the wonderful healthy recipes that you have created through this illness. Endlessly grateful!!
Elana says
Awww, thanks for your amazing words Jacki :-)
Amy says
Food, sleep and vitamins have so much to do with this disease. Fish oil, vitamin B, etc… I would suggest that you read the MS Diet Book (it may be outdated now…maybe a 2nd or 3rd edition…) and follow the suggestions there. I HIGHLY recommend it. I am feeling healthy and strong since 1989 and know that this, or any diagnosis like it may be a wake-up call to slow down a bit and listen to your body! I wish you good health, a strong mind and body and a positive journey. Amy
Elana says
Thanks Amy, I cover this extensively in several posts that are on my website which can be found here:
https://elanaspantry.com/category/multiple-sclerosis/
Have a lovely day!
Elana
Allyson says
Thank you SO much for your brave honesty Elana. I greatly appreciate it. I also am suffering from an autoimmune disease and have been very unwell over the last few years. As you do, I continue to do everything I can on a daily basis to get well but things have been a massive challenge and it has been disappointing to see lack of improvement despite all the things we have done. As you do, I do my best on a daily basis to keep my head up, to stay optimistic and to believe that there has to be a greater purpose in this. But I also have my days where I have a TOTAL melt down and ask “will I ever get better?” “What is the point?”. I feel the intensity of the pain and suffering and wonder if it is worth going on. A wise friend once said to me “sometimes we have to have breakdowns so that we can get back up and keep going.” As funny as it sounds, I think she is right. Anyway, I wanted to say thank you so much for sharing. I can definitely relate and hearing it from you has made me feel less alone in my pain. Thanks so much.
Elana says
Thanks for your wonderful comment Allyson. I’m so glad we are on this healing journey together :-)
will says
You have enlivened such a large number! Continue doing the website!
Elana says
Thanks Will :-)
Beth says
Thanks so much. I needed to hear again that I must grieve. Thank you for sharing. Beth
Elana says
You’re welcome Beth :-)
Marci kramer says
You are brave , strong and inspirational . I was diagnosed 8 years ago with chronic fatigue. Could not get out of bed for 2 yrs. I found you and felt I was not alone in my journey to heal my body. You made going gluten and dairy free not a punishmenT but also made it fun. And as a bonus your receipies are GREAT Hang in there. Science is advancing every day. You have brought hope and strength to so many people with chronic illnesses. Thank you for sharing
Elana says
Marci, thanks so much for your kind words! I’m so glad that my recipes have made going GF/DF fun :-)