Since my diagnosis 25 years ago, the question I am most frequently asked is: how has my MS changed over the years? My standard answer begins by saying, “MS is like a snowflake, in that no two experiences are exactly the same...”
I know, I know, pretty corny stuff! But it’s the truth. And the truth is all that matters to me. I think that when we are first diagnosed we rely on our doctors to provide us with not only our diagnosis, but also with the necessary tools we’ll need to live a full life. With MS, these tools are not cut-and-dry for each patient, since we are each different and need a different set of instructions. So, how has my MS changed? After 25 years it is still relapsing-remitting, with daily twists and turns of numbness, tingling, fatigue, cognitive issues and depression. My not-so-secret power tools? Knowledge, curiosity, a positive attitude and a healthy dose of self-advocacy.
This is what I know to be my truth: Multiple Sclerosis is an unpredictable chronic illness and until there is a cure and I don’t have to worry about my MS anymore (I pray for this!), I will stay as informed as I can. I sometimes need to lean on others (as through HealthCentral.com!) who share this illness and who’ll listen, empathize, share knowledge and even give me a much-needed hug (sometimes a virtual one.) But I also know that I am my own best friend. It took me awhile but I finally figured out that if I am not good to myself – by absorbing all I can about MS and, as Oprah says, living my best life – then I am not doing all I can to be my own best friend.
Being your own best friend means not only advocating for yourself but also taking care of yourself to be the best you can be, both physically and emotionally. I have MS but I’ll be damned if MS has me! Before the Internet and before MS medications it was more difficult to find the answers to my MS questions; researching what MS was all about and research the medications my doctor was prescribing was extremely difficult. Snail mail, the public library, an outstanding medical team and a supportive family – this is how my journey began.
Published On: March 07, 2011