Staying Social with MS

By Matt Cavallo

Many of you who follow this blog may have noticed that I haven’t posted here in a while. That is due in large part to a massive MS relapse I suffered in March and April. The relapse rendered me non-functional on my right side. I developed drop foot and could barely walk. My face drooped on the right side and I couldn’t squeeze my lips tight enough to drink without dribbling or even swish water while brushing my teeth. Most devastating is that my right arm and hand were completely numb. I couldn’t lift it or feel any sensation other than pins and needles. I also couldn’t pick anything up with my right hand and couldn’t grab a pen, keys or even type.

April and May were spent mostly in recovery, waiting for my functionality to return.  As a result, I wasn’t writing. Writing wasn’t the only thing I was avoiding. I didn’t want my friends to see me while I was in a relapse and recovery mode. I started isolating myself to anyone outside of my house. I missed events at school for my kids and major events like a good friend’s baby shower. (Actually, I briefly attended that one but quickly left due to embarrassment when I dropped a plate of food in the buffet line due to my numb hand). This also took a toll on social interactions at work. I travel quite extensively and all of a sudden I was asked to stay home instead. While it was for the better, it still changed the dynamics of those relationships.

Deep down I knew avoiding everyone wasn’t healthy, but I also didn’t want anyone to see me in my current state. I have spent so much of my life and professional career showing people how well I am managing my MS and to have this severe a relapse really was damaging to the way I felt about myself. While my wife was a rock, I could see that my condition was taking a toll on my two young boys, age 6 and 8. I couldn’t participate in their activities and they had to watch their dad go receive home infusions and struggle with mobility. All of a sudden, I found myself in the throes of depression. I knew I had to take action, but I didn’t know where to start.

The first thing I did was talk to my neurologist. Since I was having a major relapse, my neurologist was seeing me every two weeks to monitor my recovery. I disclosed to him some of the concerns I was having at home, at work and with friends and he suggested that I talk to a psychologist. While I thought it was a good idea, I decided to manage my depression on my own. This was a personal decision, if you are going through something similar, please reach out to someone who could help.

I decided to have a talk with my boss. He completely understood and supported me in my recovery. He appreciated that I was being open and honest with him. He reiterated that I was a valuable member of the team and that my health was the most important thing. He made changes to my schedule to accommodate my disability.

Next, I started having discussions with my friends. I reached out to some close friends to meet me for dinner. I explained everything I was going through and they were very sympathetic. Like my boss, they wanted me to know that they valued me as a person and that my MS was a part of who I was and that it didn’t change the way they thought about me at all.

Finally, I had a talk with my kids. I explained in the best way I could what was going on with my relapse and recovery. They hugged me and told me that despite what I was going through, that I was the best dad in the world. My wife has been my rock through this and I couldn’t have started my social outreach if it hadn’t been for her support and understanding.

Some of you may have a hard time staying social with MS. Maybe you are withdrawing from your family, friends and work, like I was. I just want to let you know that you are not alone. Being diagnosed with MS, losing functionality, dealing with devastating fatigue is a lot for a person to handle. To further complicate it, the people closest to you may not understand what you are going through. Everyone deals with MS in a different way. I just want to let you know that if you are feeling isolated or depressed, there are people out there that can help.

If you are feeling the same way, here are some tips that can help:

  • Talk to your neurologist, or other doctor, about how you are feeling.
  • Tell your friends, family and coworkers what you are experiencing. Even if they don’t completely understand they will want to be involved in your life.
  • Attend a support group meeting, MS webinar or social media MS group. There are opportunities to network with other people living with MS like you and sometimes it is nice to have a conversation with someone who understands.
  • Don’t overdo it. When I first decided to reengage socially, I pushed myself to the limit and wound up being really fatigued. If you set expectations and don’t overdo it, everyone will understand.

This last relapse was a tough one. It made me pull away from the people and the things that I love. I stayed isolated and depressed for a while. I decided to talk to my doctor, friends, coworkers and family about how I was feeling and together, we got through it. If you are having trouble with MS, staying social just might be the support you need.

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

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As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

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