Daily life with MS

I am not sure how my wife thought I would react when she told me that she had been diagnosed with multiple sclerosis (MS). It was 2005, and we had been married less than a year. I had always embraced challenges in life, and this one was no different. I knew it meant things could get hard at times, and I also knew that I needed to learn all I could about MS and find ways to motivate and support my wife. While everyone's situation is different, here are a few things that work for me to feel that I am helping her as much as possible.

I have learned to plan for downtime each day for my wife in case it is needed. With a 7-year-old son, things get busy. We’ve found many times that a 30- to 60-minute rest has really helped give my wife the energy to enjoy family time without feeling exhausted.

With MS, there can be constant reminders of the limitations imposed by the disease. Try to balance things out by reminding your loved one of all of their abilities and strengths. You will likely be amazed by what they feel inspired to accomplish by your motivation. My son and I always try to let my wife know that we are her biggest supporters in any way that we can.

Having MS doesn’t mean you and your loved one can’t enjoy life and have fun. Many times, my wife replaces words in a sentence with ones that do not make sense or fit. This is likely a cognitive issue related to her MS, but many times we joke around and have a good laugh about it when it happens. While it's important not to dismiss new or changing symptoms, we use this one small way to cope with the many changes that come with MS. Be sure to talk to your doctor about any questions related to your symptoms.

I know that my wife needs to sleep late many mornings. Therefore, I usually plan on getting my son ready and taking him to school each day. I also try not to schedule family outings early in the morning on weekends to allow her more time to sleep. When possible, we try to schedule outdoor activities around the coolest times of the day to help with her energy levels.

Living with a chronic illness such as MS can be scary. Your loved one needs to know that you are there for them when needed. It can make the disease feel more manageable knowing you are by their side for support. Sometimes it is the small things that help them feel secure. I try to be as involved as possible with staying up to date and involved with my wife’s neurology visits, treatment decisions, and symptoms. 

While having a loved one that has MS sometimes means a lot of your time and energy is focused on caring for and supporting them, you have to be mindful of your own needs and well-being. After all, you may be their primary support, and they likely depend on you for stability. I usually try to spend at least a small portion of my day doing something I enjoy. This could be watching a favorite TV show or playing catch with my son. It is a lot easier to be caring and supportive to my wife when I am in a good place mentally.

If I could only share one thing that is a must for caring for someone with MS, it would be to constantly work on talking to one another. MS invokes feelings of denial, fear, anger, uncertainty, and sadness. These are complex emotions that have to be discussed and worked through. My wife and I are always striving to improve our communication and working to make sure that we always share the good, bad, and sometimes confusing parts of our day. Many times this involves talking about my wife’s disease. We have a strict policy of no secrets. With MS, you can’t fully support and care for your loved one’s needs if you don’t know everything that is going on with them. While these conversations are sometimes awkward or challenging, they are imperative to your ability to support an individual with MS.

Strong relationships are the foundation. The basis of the relationship with your loved one should not change just because he or she has MS. Obviously, MS affects some of the dynamics of my marriage. But my wife is the same person I married, with or without MS. I am lucky that she affords me the same courtesy with my increased waist size. Joking aside, there are challenges that have been presented by her MS. But I think that those challenges have strengthened our ability to depend on one another, be better parents, and not take the future for granted.