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?!
Free exclusive eBook, plus recipes and health tips, delivered to your inbox.
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.
Hayley says
I needed to read this today, excellent post for chronic illness sufferers. Sometimes we try and stay so positive that we do a disservice to ourselves and our suffering. Maybe to please others and maybe just to cope but I think it’s important to acknowledge how hard our lives our. We cannot normalise poor health. Love your blog. And also have you been tested for Lyme? I have chronic Lyme but my initial diagnosis was MS. My Lyme doctor believes a lot of cases of MS could be due to a bacterial infection.
Elana says
Hayley, thanks so much for your comment. I wrote about Lyme disease here:
https://elanaspantry.com/new-approaches-to-neurological-conditions/
Take Care!
Elana
Karina says
Thank you for this post. Sometimes I think the emotional aspect of having a chronic condition is more challenging to deal with than the condition itself – depending on the day of course! Its always a relief, as well as an inspiration, to know that others share the same feelings. As you know, you have touched so many lives and that, in and of itself, is tremendous! And, you never know how far that touch reaches. I was skimming the comments to this post over the weekend and saw the reference to the Betrayal Series. I had not idea what it was and now will be watching the entire series over the next few weeks. I’m not entirely sure what to make of the entire production, but its a motivator to reexamine my diet and start an exercise regimen – two key items that have been sadly neglected. THANK YOU again for this post, for your blog and for being the awesome person that you are! One day, when I am feeling better and with more time and energy, I hope I can inspire others in your same fashion. Blessings to you and your family.
Elana says
Thanks so very much Karina! Blessings to you and yours :-)
Kim says
Dear Elana,
Thank you for being so real and honest. And thank you for being so incredibly generous in sharing your recipes over the years. This site was exactly what I needed when I was diagnosed with celiac. I come back to your recipes time and time again. But more importantly, you are such an inspirational person. Thank you!
Elana says
Thanks Kim!
Mariana Ardelean says
Elena you are so beautiful outside and inside. Tears went down my face reading your email , may God bless you and give you strength everyday . I have Hashimoto and it’s not getting better been trying to heal for 6 years I am with you dealing with pain everyday and hoping one day my outoimmun problem will be gone if not I want to be a good model for my family . Health , healing and blessings to you!
Elana says
Thanks Marianna, and many health and blessings to you too!
Jennifer Kruse says
Elena, I’ve had MS for over twenty years (I’m 45) and am now in remission – so of course I currently feel pretty optimistic about my prognosis. I didn’t feel this way in years past when I was suffering relapse after relapse. In those days, I was also stressed due to the demands of law school or from working as an attorney. So I had to change my lifestyle. I am now a stay at home mom (of three loving boys) and it seems my MS is in hiding. I’m fortunate to have a supportive husband and the opportunity to rest, exercise my tail off, and eat very well. But I’m well aware that my attitude could quickly go to h@!! if I suffered another relapse. I’m not prone to depression but I have cried on my sweet husband’s shoulder in years past when I feared my health might take a downward spiral.
I’ve mentioned in prior comments that I’ve managed to control my MS, not with medicine, but with a stringent diet and tons of hard core exercise. What I failed to mention is that I also attribute my remission to indulging my sense of humor. As I run, I listen to audiobook (like Chelsea Handler, Amy Schemer, Tina Fey, David Sedaris, Bill Bryson). And I watch primarily funny movies (such as Bad Moms, Hangover, Bridesmaids). And I try to surround myself with funny people. If happen to be in the company of people that are too serious, my goal is to try to make them laugh from the belly.
Don’t get me wrong, I understand that MS sucks and is serious business. It destroys lives and might eventually destroy mine to some extent. But it might not. Nobody really knows their future. The ways your genetics and environmental exposures actually pan out is so random. There is only so much we have control over. The rest is out of our hands. It’s not fair. Tears and laughter work well in dealing with it. I love how you have decided not to lie to yourself anymore about how much it sucks. But also, don’t forget to find humor in all the incongruencies in life. It might mend your spirit.
Elana says
Jennifer, I totally agree! Humor is the best :-)
Miranda says
You are such an inspirational person Elana. Thankyou for reminding me that it is okay to allow yourself to truely feel the darkest of dark emotions, and in fact, it is probably an important part of the healing. I have been following your blog for about 6 months and have tried many of your recipes, which never fail! You are the complete package, giving many people practical as well as emotional support. Good luck with all that your dealing with and please take courage in knowing that so many people across the world are wanting the best for you, cheers, Miranda from Australia
Elana says
Thanks for your amazing words Miranda, I really appreciate them :-)
korey thompson says
thank you for your bravery and wisdom in living honestly w chronic illness and for sharing your experiences with us. you are the real deal! i’ve found strength in your articles and much good food in your recipes.
so as we all stagger along shadowy places on the path healing we hold the light for each other, and much light shines from your lantern, beautiful woman! thank you!
Elana says
That is so beautiful Kory. Thank you :-)
Karisa says
Wow, I’ve read your blog before and was always inspired by your positivity in spite of your diagnosis. What you wrote really touched me and resonated with how I’ve been feeling. I have A Hashimoto’s Thyroiditis diagnosis that I have been trying to heal for the last two years. Yesterday it hit me that maybe I’m supposed to learn how to “live in the grey” instead of being healed. It made me grieve to think that thought but realized maybe that is my reality. I just don’t really feel like I’m whole. So many gaps and symptoms. Thank you for your transparency. It made me feel like I’m not alone.
Elana says
Karisa, I’m sorry to hear about what you are going through, but at the same time, so glad we are on this journey together :-)
Abi says
Elana,
While I haven’t been diagnosed with MS, I’ve been battling Lyme, severe hormonal issues and some other nonsense that we’re still trying to put a finger on. Like you, I try to be positive and press forward, but there are days when I have broken down…we’re human and it’s ok. I used to mourn for the days past when my health was better. I have decided to stop and just deal with what is currently on hand (especially since the cause if some of these issues remains unknown). Reading some of your posts and those of others going through something has been helpful – it’s good to know we’re not alone. I know you’ve done lots of research and tried so many things, but one thing that I’m discovering that’s helping some people overcome issues is removing root canals (even those that have nothing to do with mercury). After reading your radiation post and reviewing Dr. Minkoff’s site (he’s located in Florida and I have no affiliation and was simply impressed) I wonder if he might not be able to help you. I recall reading how he treated someone who had severe issues with radiation as well. Just wanted to metnion that. Wishing you the best as you work towards improved health. Just know that you’re not alone and we’re all rooting for you!
Elana says
Hi Abi, I wrote about getting the mercury out here:
https://elanaspantry.com/new-approaches-to-neurological-conditions/
Thanks for recommending Minkoff!
Elana
Marilyn Flynn says
Hi Elana:
I watched a very powerful series this week called Betrayal: The Autoimmune Disease Solution They’re Not Telling You. It is being rerun this weekend on the internet until this evening. You can google this and Dr. Tom O’Bryan to find out more about it. They talk to many functional medicine doctors, researchers, scientists and patients, who have been helped by this approach. They say that most diseases are Autoimmune diseases and treat the whole body. Eliminating wheat and dairy, plus some other foods that cause inflammation, balancing the gut, removing toxins, taking supplements, removing stress, etc., are all part of the program. If you have not seen this, it is worthwhile to check it out. Their series can also be purchased. There are 7 episodes, plus 2 question and answer programs.
Elana says
Marilyn, I wrote about my approach to health which is very similar to this here:
https://elanaspantry.com/getting-diagnosed-with-multiple-sclerosis/
Thanks!
Elana
Mae says
Was feeling a bit of your frustration the day I read this in my own life.
One of my first vacations that I felt well, was Glenwood Springs. Lots of hiking for your family the pool seemed to keep my voltage up. Close to Denver so I could bail if needed. Highly recommend as a kick start for trying to vacation again.
Anger does not serve us. It has it’s limitations. The most interesting thing about seeing Dr Tennant was his comment that the soul takes longer then the body to heal. He also does not claim healing just support for his own condition.
I personally have been using voltage therapy. Dr Jerry Tennant in Tx invented it similar to Russian SCENAR therapy. I wear. It all vacation long sometimes. I wear to bed when getting immune flare ups. His book is on Amazon Healing is Voltage by Dr Tennant and have not mentioned it because you have a lot of therapies studied and under your belt.
Your determination has helped thousands of people. It is unfair to not recognize how far you have come.
Feel free to contact me if you want to try out the voltage therapy. I have the eye portion also.
As far as support for my condition, he has reversed blindness in me but not healed it.
I totally understand his statement now that I have been at this for awhile. Lots of grief must take place to make the best decisions going forward.
Elana says
Thanks so much Mae!