Balancing Motherhood, MS, and the FOMO.

I was always a summer sun person. As as child, I played outside or swam everyday until dark. As a teenager, I swam in the early mornings and again in the evenings for swim team, playing outside with friends much of the day in between. Then as a young adult, I was a lifeguard and swim instructor for many years. Even as a Mom, summer meant taking my kids on adventures, going to the pool, and growing a vegetable garden for our family. What’s a little sweat? A little discomfort? Nothing compared to the many fun things summer has to offer.

Until I began to struggle with Multiple Sclerosis (MS).

Summer is now the season in which I know I will struggle physically and emotionally. I know I will have to make the most difficult decisions and some tough sacrifices.

Heat and MS just don’t work well together. Just as heat slows down the functions of a typical person, heat slows down the functions of a person with MS- whose body is already struggling to operate. Getting overheated for me now means a minimum two day recovery, the first of which I will likely lose my ability to walk properly. As in, I may need to whip out the walker.

The sun is also not my BFF anymore. Gone are the days of a nice little tan. The medications and treatments I have used to treat my MS have increased my risk of developing cancers, and also, for some reason; cause my skin to first burn, rather than tan, like it used to.

How much is too much? I often don’t know the answer to that. The variables of sun intensity, temperature, humidity, hydration, amount of sleep I had on a given night, or just a random change in how my MS is behaving all affects how much I can handle. Many times, I don’t know until later that day or the next that I overdid it.

So what do I do?

1. Every day I have to make my choices. FOMO (Fear Of Missing Out) is a very real thing for me, so I have to make sure that I am weighing the merits and possible consequences of any activity.
2. Prepare: If I am going to go do something, I need to organize myself in such a way that I have the highest chance of seeing the activity through without hurting myself. I keep close tabs on the weather and try to schedule outdoor activities earlier in the day. I make sure I have a water bottle, sunscreen, hat, sunglasses, proper clothing, maybe an umbrella, likely a cooling rag, and a plan to leave if things are not working out for me. (I struggle with that last part: see #1 FOMO). We don’t plan family trips to hotter locations in the summer months.
3. Accept that I am going to look “ridiculous” most of the time. I’m either going to look like I’ve prepared for Armageddon to take my kids to the pool, or I’m going to walk like a drunken sailor for not preparing properly for outdoor activity.

The very hardest to manage is #1. This is the part where I will absolutely come off as a spoiled child.

As a mom, I want to give my kids the childhood I had and then some. They deserve the adventures and explorations that the world has to offer in the summer. Whether that’s long hikes on a vacation, a day on the lake, or bike rides through our community, I want them to experience those things. I want to be at every soccer, baseball, sand volleyball game and swim meet cheering. I want to BE THERE for those things. MS forces me to choose, or limits me completely from the outset because my body has been through so much the last 4 years, I’m simply not strong enough yet to participate. (I’m hanging onto that YET for dear life folks.)

As an adult, I want to buddy up with neighbors and friends at the pool for hours with a beverage and not be terrified of germs and sun burns. I want to take a long walk with a friend whenever they ask and are available. I want to take trips with my spouse and not be worried about whether I can manage the walking or lack of air conditioning. I’d like to properly weed my landscaping. I want to look like everyone else who is outside, and not like the super nutty nut who has sunscreen, a hat, and an umbrella as if the sun and heat is as deadly to me as it is to a vampire.

Multiple Sclerosis doesn’t care what I want. It is ever changing, but always unyielding. I cannot take any more that it is willing to allow. The consequences for too much activity or overheating are very real, and sometimes devastating. Occasionally, the look on my child’s face when I struggle to walk is not worth the little bit of fun I had the day before.

Planning, preparing, and accepting makes MS in the summer manageable. I communicate my needs to those around me and who love me, I prepare for the activities that I simply refuse to give up, and I also prepare for and accept the consequences of those choices. It is not unheard of for me to tell my spouse that I am prioritizing some time at the pool with the kids over making a family meal. I know from experience I will not be able to do both. A trip to the zoo one day probably means a day on the couch or in bed the next day, so I plan my calendar accordingly. And sometimes, I have to say “no.” Sometimes, I have to miss the fun. Sometimes, less has to be enough.

If you are someone who is struggling with MS or another condition that makes activities challenging for you, I send you my love and support. It can be so hard sometimes. You are not alone in these struggles. The people who know and love you will support you and include you if you communicate your needs and limitations. It may also help you to find products that will allow you to get out and manage the sun and heat.

And if you are someone who happens to see me out, looking a little over-prepared, and perhaps even ridiculous, give me the benefit of the doubt. Maybe even try to picture me as “cool.” I’m pretty sure I was “cool,” at least once in my pre-mutliple sclerosis days.