Nurse Kimberly Asks...
My patients are always telling me about the essential roles their family and friends play in their lives. I personally think it’s so important to have someone you can confide in. Tell us a little bit about what your support partners do for you. How are your support partners involved in your life and decisions? How do you work together through the difficult times?
Relationships with support partners
August 6, 2018
I am extremely lucky to have such a great support system. My mother and sister are in the medical field and have been with me through every step of my journey with relapsing multiple sclerosis (MS). Additionally, my partner, son, friends, and coworkers have all been very helpful and understanding. They lend their support in many ways, such as going to informational meetings with me, attending doctor appointments, reminding me when I need to take a break, and helping me with housekeeping when I am not feeling well. My circle of support is always willing to lend a helping hand when I need it, but more importantly, they help me to make sure I focus on other things, aside from my relapsing MS. We don’t talk about my relapsing MS diagnosis very often, and it definitely doesn’t define me in their eyes, but that also doesn’t mean it never comes up.
I am blessed with many people in my life who have stuck by me in good times and bad.
My sister is a big help when I need to make treatment decisions. She listens patiently when I tell her about all of the research I have done, why I would like to change my relapsing MS treatment, and what other options I’m considering. She attends meetings to learn more about relapsing MS medications and talks to her medical counterparts to get their opinions. When I’m having a hard time making a choice, she plays devil’s advocate to help me see all aspects of any decision that I’m making. We might not always agree at first, but ultimately she always supports my decisions.
I am blessed with many people in my life who have stuck by me in good times and bad. On most days, I don’t even think about the fact that I have relapsing MS. I am able to live my life to the fullest without much interruption from this disease, and for that I am grateful. From time to time, however, I am unable to deny that I have relapsing MS. During a relapse, MS is large and in charge, and I do not deal with that well. However, I always hold the attitude that I am not going to let relapsing MS win, but as anyone with MS can tell you, the disease gets a head start during a relapse—and we have to work even harder to catch up.
When this happens, I urge you to lean on your friends and family if you need to. I certainly do. When I’m having a relapse, I feel depressed and defeated. But I know my support team is by my side, even when I’m not my best self. And once I start therapy to take care of the relapse, I begin feeling like I am in control again. My mood changes from defeat to drive. It’s not always going to be easy. In fact, a lot of the time it might be very difficult, but having a good support team that you can talk to makes a huge difference.
Relationships with support partners
August 6, 2018
We attended a wedding recently and we couldn’t help but think that it seemed like only yesterday that we were THAT couple. I used to assume that the couples who were married over 27 years must be OLD.
I’ve been rethinking that.
Big moment? The vow: “In sickness and in health.”
After I was diagnosed with relapsing MS, we got taste of what was to come while we were driving home from the hospital. I was bubbling over with joy at FINALLY being discharged. I was going home! However, my husband absorbed it a bit differently. He was agitated. He voiced that this was NOT a time to be happy. Didn’t I realize what had just happened?
Now I prefer to go to my doctor’s appointments alone. It’s more comfortable for me, and besides, my husband prefers to be updated afterwards anyway. I’m not sure how typical that is, but it works for us and we manage the decisions together when deciding on our next steps.
My husband likes to work off my Honey-Do List. My husband is wired to want to fix things. So, one way he expressed his love for me was by checking tasks off my Honey-Do list. I realized much later, that it was my symptom list causing a big part of his frustration. Naturally, he saw the need to fix what was wrong with me. But because my relapsing MS symptoms were out of his control, it was impossible for him to fix them. It must have crushed him.
For a while, we struggled with communicating. Interpreting emotions during that time tended to put us in situations where we misinterpreted signals to and from each other. Rejection, resentment, bitterness, and anger are just a handful. Human nature wants to self-preserve. Any arguments grew out of hurt feelings.
Thank you for being there, just as you promised, through sickness and in health.
I won’t lie - MS tested our marriage. Somehow though, through those difficult times, we learned how to offer grace and mercy, along with love, patience, and understanding. But most of all, forgiveness. Hard lessons, but worth learning.
This is a tribute I wrote for my loving husband.
How did we muddle through it? I’d say it’s strongly because of the commitment we made in front of God. Early on, we recognized that our vows must supersede our feelings. The attributes that I spoke about above? Conflict presented the opportunity for us to practice those attributes. Before, we only knew of them. I am deeply thankful for, and grateful to, my forever best friend: my husband.
Nurse Kimberly Sums It Up
Relapsing MS poses many challenges for friends and families, but a strong bond with your loved ones can really make a difference in your life. On top of providing emotional support, your care partner may notice changes in your mood, or if you forget to take your relapsing MS medication. I’ve found that being honest and understanding can go a long way. What do you appreciate most about your support partners? Share it in the comment section below to tell others how your support partners made a difference in your life.