Physical weakness, fatigue, impaired ability to remember information. MS certainly can take a toll on what day-to-day life looks like. For many living with MS, you now have a greater appreciation for what life looked like before the diagnosis.
Because it’s very common to miss aspects of life that fell victim to the disease, we wanted to start a conversation about the topic. On the MultipleSclerosis.net Facebook page, we asked you to share what you miss most.
Here’s what you had to say.
“The energy I used to have.”
Without a doubt, the number one answer from the community about what you miss the most is your energy. This makes sense, especially considering that the National Multiple Sclerosis Society reports that 80% of people with MS experience fatigue. Fatigue will slow anyone down, but it doesn’t have to keep you out of the game. One way to make the most of the energy you do have is to keep track, possibly with a journal, of your energy and what affects it. This way, you can plan ahead and include restorative time as needed.
“My energy. My ability to get things done.”
“The energy I used to have.”
“Going from being on the move all day to being exhausted 24/7 has had the biggest impact on my life by far.”
“The ability to be spontaneous.”
A lot of you also commented on how MS has taken away your ability to live in the moment. Especially for those who need help when it comes to driving and getting around town, MS now means asking for assistance and planning your day around someone’s ability to help with driving or mobility. This can no doubt be frustrating, but it sounds like the community finds ways to make it work. Many of you also appreciate the fact that you have people in their lives who are happy to help you navigate daily errands and get around.
“The ability to be spontaneous with endurance and joy.”
“Doing what I wanted when I wanted to do it.”
“Being able to just walk out the door and be spontaneous without having to plan my every move.”
“Being able to work and support myself.”
For those who were employed full-time before the diagnosis, this can be one of the hardest parts to accept. So often, we define ourselves by our careers. MS may not take away your career entirely, but it will often limit the number of hours you can show up. Maybe you’re not working at all, and that’s OK, too. Part of life for everyone is accepting that the only constant is change. That life may look one way one day, and entirely different the next. We adapt. If you no longer hold a full-time job but still want to make money and/or feel useful, there are likely ways to work part-time, which may look entirely different from what you were doing before, or perhaps you would be able to volunteer. Many people living with MS own companies, hold management roles and continue to redefine what they consider possible.
“My ability to work at a profession I loved.”
“My independence. Being able to work and support myself.”
“My mobility. I miss walking.”
So, so many of you mentioned how much MS has affected your physical wellbeing. Walking especially is a challenge. Harder still, most everyone in the community knows that exercise is a great way to manage symptoms. The trick is finding a physical outlet that you can do—and enjoy. Yoga and adaptive yoga may help, as can Tai chi, swimming and exercising in water. Just know that you are not without options.
“Walking. Standing for any length of time. I wish I didn’t have to depend on my cane and walker.”
“My mobility. I miss walking.”
“Walking without pain.”
“Being able to hike all the trails.”
“Driving. Oh how I miss it.”
MS definitely affects the ability to drive. It can slow reaction times, and how well you operate the pedals. Some specialists will clear you to drive so long as you are not having a flare-up. However, as the disease progresses, your ability to drive may slowly decline until it’s not safe for you. Do keep in mind, however, that car modifications are available and can make driving easier. One way to find out if these will work for you is to first ask for an evaluation to see where you are at with driving. Rehabilitation hospitals, motor vehicle departments and MS centers often offer this kind of testing. Then, you may be matched with vehicle modifications, including knobs or handles for steering, bigger mirrors and even reduced-effort brakes.
“Being able to balance a motorcycle.”
“Driving. Oh how I miss it.”
“Taking long drives.”
“My cognitive abilities.”
MS brings cognitive impairment in 40-65 percent of people living with the diagnosis—in other words, it’s fairly common, affecting around half of everyone in the community. This can mean a harder time learning and remembering information, understanding language and performing calculations. That said, just because these tasks are harder doesn’t mean you need to wave a white flag. Start by giving yourself more time to learn things. To recall information, you may need to repeat it out loud and write it down. Many in the community find that there are tricks to staying on top of what they need to do, from writing more lists, to using a voice recording app to track information and setting alarms to help you remember things throughout the day.
“My cognitive abilities.”
“I’d still be able to think logically.”
“I often feel overwhelmed just being able to understand what people are saying.”
“Putting my hair a ponytail and unpeeling a banana!”
For many of you, it’s the small, simple things that you miss the most. This disease can make it so that you need to use adaptive techniques and tricks to do even the most basic things that you could easily do before. And that’s OK. Living with MS takes work to accept. Acceptance is perhaps the hardest part in all of this, but also something that will bring the greatest peace when achieved. Acceptance work can look like being grateful for what you can do physically or mentally. Acceptance also looks like living in the moment, not worrying about the future or stressing about the past. You may find that right now, in this moment, things are OK and you are doing OK.
“Putting my hair a ponytail and unpeeling a banana! Walking, cooking, taking a shower, helping people with their luggage, getting gas and a list of other things. All I do is sit. I used to be a runner but ill take just taking a step!”
“Being able to finish watching a full movie without having to pee.”
We want to say thank you to every member who opened up and participated in this conversation. It’s our hope that your sharing brings the community closer together.
