A few weeks ago, Julie had an idea: she would ask me a series of questions about managing training and life after my diagnosis with multiple sclerosis, and after I had answered she would add some thoughts as well. Since I'm used to being the one asking the questions and not answering them, this was unfamiliar territory for me ... but I finally finished, and here is the end product:
J: MS has really brought so much into focus in our lives--some of which we weren't ready to face. It's been humbling. In terms of our relationship, I've heard that a chronic diagnosis is like having a "third wheel," and I can see why. It takes more work--more communication, more patience, more understanding. I wish I could say that we've been gentle and kind with each other from the get-go, but it's taken time, anger, grief, sadness and now we're entering a place where we can face this together. I'm sure it will always be a work in progress.
Q: Michael, do you find that your training routine has been impacted by the disease?
M: Not as much as I might have expected. I've been able to do all of the training runs (including my fastest half-marathon ever and a recent 18-mile training run) without feeling any worse for the wear. Actually, running has typically made me feel better. I do keep an eye on how I'm feeling because I tend to get some symptoms if I get overheated. So if it's supposed to be an 85-degree day, for example, I will run in the morning or night instead of mid-day -- though that's probably good advice for anyone!
Q: What resources have you benefited from and what recommendations do you have for newly diagnosed individuals who may be reading?
M: I don't know if I have a specific go-to resource for MS, though I have found the Overcoming Multiple Sclerosis web site (http://www.overcomingmultiplesclerosis.org/
) helpful. My biggest pieces of advice for those who are newly diagnosed (or even those who have had MS for any amount of time) is to keep trying new things to see what works in terms of making you feel better. Try diet (I'm gluten-free, mostly dairy-free and I eat very little saturated fat. I also have learned that drinking alcohol in moderation seems to be important for me, too). Try exercise (you don't have to train for a marathon, but being active has a ton of benefits). Try meditation (it's great for a combination of getting rest and calming anxiety). Try medication if it's available (I'm currently on Copaxone, a three-times-a-week injection designed to help slow or halt the progression of the disease). And don't be afraid to talk about your diagnosis. It can be a little overwhelming at first, but talking about it helps you along with the process of mental healing.
J: Michael is also taking fish oil, glucosamine/chondroitin, and high doses of vitamin D--in addition to multivitamins. One other resource is a couples support group we found out about on the National MS Society website. It's been great to meet others who have been affected by the disease. For me, it's helpful to meet the spouses of those affected by MS--since we're going through the same thing.
Q: Having a child is a major life change—and so is a major diagnosis like MS. How have you dealt with both concurrently?
M: That's been a major challenge because ideally I could devote the energy
that is divided by those two new things (my diagnosis came 5 days before our daughter was born, about 13 months ago) to just one of those things. But I've also found that our daughter, Anabel, is both a great distraction and a great joy. Things that take my mind off of MS are good, and she is certainly that.
J: Recently, Michael and I were reflecting on the months after his diagnosis and the arrival of our baby. While Michael had his diagnosis to deal with, I felt like I had to choose between "Team Rand" and "Team Anabel," and I chose Anabel. Well, that's not exactly accurate. I didn't feel I had a choice--just like Michael didn't have a choice regarding his diagnosis. I had to take care of the baby, and I couldn't really take care of Michael. We've both been really divided in terms of focus and our energies--and now we're starting to recover.
Q: What is it about running that made you want to make the commitment to running a marathon despite having not only a young child, but also a diagnosis to deal with?
M: Part of it is that I'm goal-oriented and having something I'm striving toward helps me focus. And part of it is that back when I was diagnosed, and particularly in the time leading up to the diagnosis when I was feeling especially bad and could only run a few miles at a time, I wasn't sure if I would ever be able to run another marathon. Even though I've made some concessions to MS, the more I can still do the things I've always done, the more it feels like I'm in control of my life.
J: I'm goal oriented too, so it was a natural thought-- when should I plan my next marathon? But I didn't want to go it alone. I wanted it to be both of us or not at all. I'm so glad Michael felt up for it because otherwise I wouldn't have signed up. During those long runs, I can blame him for the pain, right?! Haha.
Q: What other coping strategies have worked for you?
M: As noted above, diet and meditation have helped to varying degrees, as has talking about the disease.
J: The past year has really caught up with me in terms of anxiety, so I have started meditating too. I'm reading up about mindfulness and I have a great counselor. Michael and I have been working on boosting our communication-- we make mistakes and get caught up in the day-to-day, but we're able check in with each other and bring each other back into the moment. It's a process.
Q: What words of advice do you have for other new parents or newly diagnosed readers out there?
M: Be patient with both the disease and as a parent. And when dealing with hard times, remember: Everything is a process, so don't be discouraged if you are trying things to ease a particular struggle and not getting immediate results. Often it takes months or even years for us to get into the kinds of patterns and ruts that cause unhappiness, so we shouldn't expect to be cured in hours or days.
J: Seek help. There's no reason to go it alone, and friends and family will likely offer to help-- so just accept it. Meals, babysitting, a night in with friends--it will all help. And be gentle with yourself. We're so used to going about our lives at 100 mph--it's okay to take time, and learn how to live with the new diagnosis.