Nurse Kimberly Asks...
As a Nurse, I can tell you what relapsing multiple sclerosis is, and give you my best medical advice, but living with MS is a unique experience that I can’t pretend to fully understand. Sometimes you just need a helping hand from someone who’s been there. Since you’ve been diagnosed with MS, you’ve experienced many ups and downs and learned from them. So whether it’s helping someone find resources, volunteering at events, or even just being a good listener, how do you take what you’ve learned and pay it forward in the MS community?
Paying it forward in the MS community
November 26, 2018
Knowledge is only powerful if you take what you know and then teach others. There are so many different things to learn when it comes to multiple sclerosis, many that you cannot learn from a book or a journal—you have to live it to learn it. Like how it really “feels” to have MS. From a book you can see that one of the most common symptoms of MS is fatigue. Someone who does not have MS may think this means feeling a bit tired after a less than beneficial night of rest. To someone with MS, this means that every part of your mind and body is beyond performing even the smallest of tasks, and that this fatigue can hit you after just sleeping soundly for 10 hours straight. It is a true feeling of not being able to even lift your leg to put one foot in front of the other.
When I was first diagnosed, I attended a small support group, but felt discouraged, as many of the members had been diagnosed years earlier, were now not working, and were struggling with physical disabilities. At age 26, with my whole life ahead of me, this was a tough pill to swallow. From there I started my own support group. The members who joined were younger and had been diagnosed more recently. Everyone had a positive attitude about their diagnosis. We shared many good times together—learning from each other as we researched topics. We even had the occasional guest speaker. Although this group has since been disbanded, a few of us still keep in contact with each other.
Although I do not currently attend a formal support group, I do have a group of friends/acquaintances with MS that I often talk with to see how they are doing, what treatments they are on, and tips that we can share with each other to help make each day the best it can be. We all have our own personal support network with our friends and family, but the bond between people dealing with MS is a special one that other people really can’t fully understand (although they try).
Paying it forward in the MS community
November 26, 2018
If you have had multiple sclerosis for a while, you know that the disease is often not readily visible to others, is unpredictable, and can be scary. So what do you do with that knowledge? How do you maintain your own quality of life and give back to the MS community? I would offer the same answer to both questions: be creative.
Find something you enjoy doing or that you’d like to try, and find a way to do it. I’ve found there are many ways to adapt the way you perform tasks and accomplish the same things. Want to learn cooking but have a hard time standing? Why not put a barstool in the kitchen? Overheating at the stove? A desktop fan might help and, as a bonus, make the house smell amazing! Is a loss of fine motor skills making it difficult to write or to use a keyboard? Consider a pen with a larger grip or voice recognition software. One of my acquaintances, who does not have MS, but uses a wheelchair, remains a competitive skeet shooter—from his chair! While it was designed for workplace activities, the online Job Accommodation Network offers a free searchable database of ideas that can be applied to everyday life. If you’re even remotely concerned, talk to your healthcare provider, but just know you can find many ways to have new experiences!
Whether you are a person living with MS or someone close to you is experiencing the disease, you have the ability to represent all of us. You can advocate for people with MS specifically, and people with disabilities in general, through your elected officials. You can volunteer at one of the many Walk MS events around the country. You can remain active in your community and share your experiences to the degree you’re comfortable. I wear a functional external stimulator on my left leg to aid in walking. It’s not apparent unless I’m wearing shorts, but it has sparked more than a few conversations with people about MS—people who don’t really understand the disease. Your contribution does not have to be huge, but MS affects an estimated 2.5 million people worldwide. If each of us educates just one or two people, our collective contribution is huge!
If you’ve been living with MS for a while, think back. Remember when you were first diagnosed? You didn’t know what to expect or how your symptoms would affect your life. None of us did, because MS is unpredictable. Consider all the people who join the ranks of people with MS every year. They have the same questions and concerns we did. Consider attending MS events or participating in online forums to be there for new patients. No one expects you to be a neurologist (unless you are!), and you can’t offer medical advice, but you can demonstrate that while MS is a life-changer, there can be a full life after the diagnosis.
Nurse Kimberly Sums It Up
So as you can see, there are many people who want to help, and many ways for you to help others. If you’ve just been diagnosed, you can do some research to find an MS community near you. This might be a support group, or even just meeting a friend of a friend who could pass on some advice. And if you don’t love the options you’ve found, you can create your own group, like Connie! Don’t be afraid to pass on your knowledge. Join in events and walks. Educate others about the condition. Learn from each other, and stay well!