My Life with MS

by Shannon Loftus

I am a stay at home, work at home, home-schooling mom to the world’s most awesome child – my son Nathaniel. Yes, I have multiple sclerosis, and it does rule my life. But, every day that I wake up and can see my son and husband, can move my limbs, even if in pain, is another day I am thankful for.

I was officially diagnosed with multiple sclerosis in the fall of 2009, although the symptoms had been ongoing since I was a freshman in high school. With this diagnosis, I also found out I had a brain tumor that, of course, during all the diagnostic testing was the only other option for the symptoms I was experiencing. Fortunately, the tumor is on the pituitary gland, benign, and not growing. I recall that on the day I was diagnosed I had a laugh-attack right there in my neurologist’s office. Multiple sclerosis is not funny by any stretch, but I found the double diagnosis to be downright morbidly hysterical at that moment. What luck! Shortly thereafter came the diagnosis of epilepsy, followed by spinal stenosis. Despite all of these diagnoses, I struggle through it all with my head held high (sometimes), staying at home, working at home, and home-schooling my most precious gift that keeps me going – my son. I am also a co-leader of a multiple sclerosis support group here in my hometown. It is a pretty fun bunch of folks, MS aside!

MS has thrown a lot at me. I have been blind in one eye and half blind in the other, at the same time. I have been nearly unable to walk, hobbled and I use a cane more often than not. I have been hospitalized, and I can no longer function as the field archaeologist that I once was. I am losing the use of my left arm, and have left side weakness. The stenosis of my spine has made walking for more than a hundred yards nearly impossible. Standing, sitting, laying down are all painful.

I have adapted, not by choice, but out of necessity. MS sets the pace, so I shifted to private consulting from home, and while not my dream job, I am rewarded with a gift that I know I will be forever grateful for – as much time spent with my son as possible, the opportunity to watch him grow while my eyes still work, and the special time we get to spend snuggling up while he still thinks mom is cool, hanging out at the movies, and hitting the pool in the summer.

I have also experienced depression. I once laughed at the notion of MS and depression going hand in hand. I was so wrong and I was very humbled by my year and a half long journey through a tunnel of personal darkness. I now have immense compassion for those suffering depression, no matter the cause.

I am honored to be able to share with others my journey of life with MS. It is not always fun, but it is what it is. I try to find the humor in life, and frankly the trifecta of illnesses I live with provides a bottomless well of material in that regard. I would love to share the ups and downs, ins and outs, and the overall experience of what it is like to have MS. The disease affects each of us very differently, and I believe it is only through sharing our experiences that each of us finds comfort, solace, and the ability to keep fighting.

Be Thankful for the Day!

-Shann-

Share

Family Ties

The relationships that we hold with family members are some of the most significant and influential ties that we will carry throughout our lifetime. These bonds, whether good or a little rocky at times, help to build the foundation of our relations with other people. Because these relationships hold so much meaning and importance, individuals put forth much effort into maintaining them to ensure they remain intact. What helps to make this possible?

A key element in all types of relationships is communication. Being able to disclose feelings, concerns, and needs to others is important and can build strong ties in the connections. Reading other people’s minds can be a challenge, so talking openly about things is a good step to knowing what the other person is feeling. This isn’t easy for everyone; it can be difficult to bring matters to other people’s attention and talk about different issues, especially if they are personal or sensitive in nature. Because of this it’s important to think about whom you feel comfortable disclosing things to if challenges arise.

Having that go-to person/support in place is essential to communicating effectively and being able to share your personal experiences. Sometimes you may seek this type of support outside of your family structure which may inadvertently upset family members. So then with family, you may need to have a discussion about communications barriers or discomforts to be able to disclose why communication is difficult. This can help to reduce confusion and misconceptions in these relationships, and still leave the communication lines open. As family remains one of the strongest ties in connecting to others, communication will remain an integral part of this system.

Share