It is finally cool enough to turn off the air conditioner, throw open the windows and enjoy some nicer weather. I am giddy with excitement at this early taste of Fall because hanging out in the heat of summer can make my MS symptoms even worse. As kids, my brothers, sister and I stayed outside playing until the street lights came on or our Dad whistled for us, whichever came first. We didn't have video games, cell phones and tablets to stare out so we were forced to find our own entertainment. I am so thankful for all those years spent outside especially since extreme weather keeps me inside way too much these days. Get out and enjoy this beautiful weather because you never know what tomorrow might bring.
I am not suggesting that having an illness or a disability is in our head but there are ways to rise above our daily challenges by controlling our belief system. Something as simple as falling at the gym or in yoga has the power to keep me at home if I let those memories control my future actions. Getting outside my comfort zone is a daily challenge but every time I try something different and succeed, I love myself a little more.This all starts with having new thoughts which create new choices leading to new behavior that creates new experiences which ultimately lead to new, more positive emotions and thoughts. This whole process is a little more involved than just being upbeat so I'm attaching an interview with Dr. Joe Dispenza who is much better at explaining the mind body connection than I will ever be.
This last weekend we were invited to our friend's lake house in New Buffalo, Michigan.We quickly discovered that we had no cell service at all which set the tone for a relaxing and unplugged weekend. Cell phones have become such an important part of all our lives but there are plenty of studies that show a direct link to anxiety by always being "on call."We were so off the grid for a few days that even the news of the mass shootings didn't reach us until we came home on Sunday. I make a point of keeping the tv off during the day but have started to notice that I can get easily agitated and anxious when I listen to the news these days. I'm not suggesting that we put our heads in the sand or ignore current events but just that we all recognize that the constant barrage of bad news is not good for our psyche or our health.
It's always eye opening to see your life through the eyes of your loved ones. This last weekend we had a house full of family visiting including my mom and sister. They both comment whenever they visit that our home is quiet, comfortable and welcoming which is exactly how we want it to be for all our guests. It was also the kind of weekend that hopefully reassured my mom and sister that I'm doing ok even with all the health challenges I face. The both worry about me more than they should so are relieved to see me happy and independent in my own environment. The nicest part of their visit for me is that my mom and sister had a great time leaving rejuvenated, refreshed and ready to return to their own busy lives.
I know that in this politically correct world we live in today, people aren't ever quite sure how to refer to a disabled person like myself. Because of this fact, people tend not to say anything at all which only perpetuates the feeling that I have something to be ashamed about. We have a saying in our family that goes something like this: " Call me anything you want but don't call me late to dinner." I don't relish being called handicapped or special needs but in the end, they're just words. I think it more important that people are just aware of the challenges of the disabled and all the disenfranchised population so that everyone feels like they are welcome and worthy. Here's an interesting article a friend shared on FB which speaks to this subject matter.
Walking into the gym this morning as several people jockey to hold the door for me, I realized that I'm finally becoming ok with and feeling grateful for the little things that people do to make life a little easier for me. I never completely understood why I used to have such a visceral reaction to the kindness of friends and strangers until my 79 year old mom admitted that she still recoils when someone offers their arm to help her out. I guess my mom has handed down that stubbornness and fierce independence to me because it's taken many years for me to finally appreciate when someone is just offering a helping hand. It makes people feel good to be of assistance to others so it's really a win-win situation when you can accept a small kindness. I would much prefer an offer of help than for someone to look the other way when they see me struggling so if you run into me out and about, don't be afraid to offer assistance because I will gladly accept it if I need it.
Constant self criticism doesn't create an environment where your body can heal. I know this from first hand experience because I spend so much of the day everyday listening to the negative self talk in my head. I try not to let my disability hold me back in any way but by doing so I can ignore some of the physical signs that should be a warning that I have pushed myself too hard. This is the time of year when you want to spend as much time as possible outside but the heat and humidity can severely aggravate my MS symptoms so I try to stay inside under the air conditioner. But most days, rather than accept this reality and to avoid being seen as different, I have a tendency to ignore my physical limitations to "fit in." By being more concerned with other's perceptions than with taking care of myself, I continue to live in a vicious cycle of abusing my body, becoming fearful at my loss of function and then creating these worse case scenarios in my head. We all can do a better job of listening to our bodies instead of our heads, especially me. A good reminder for me when I am especially self critical is to remind myself that I would never treat a sick child this way so I need to be kind to that "inner child" and honor my limitations.
We have very few occasions in life to be truly inspired so getting to spend time with Notre Dame Women's Head Basketball coach Muffet McGraw and her amazing staff and players was truly a once in a lifetime opportunity. On Friday my daughter, two granddaughters and I drove over to Notre Dame where our 6 ft. 7 in. niece Sedona Prince is being recruited. After touring the beautiful campus, we were invited over to Coach McGraw's home for dinner, team building games and what turned out to be lots of laughs. What thrilled me most about the evening other than seeing Sedona so happy was to witness the actual moment when my granddaughters got to meet a coaching legend and one of the most influential feminists of our time. It may not sink in until they are older but having strong female role models who make no apologies for being successful at what they do will inform them for years to come of the importance of following their dreams in life. My sincere wish for them as they grow up in this male dominated world we live in now is that they are inspired to go after all their goals in life while never, ever feeling inferior to their male counterparts.
I’m siting here at Metro Imfusion getting my yearly dose of steroids. I don’t love the bad headache and sleepless nights that always come along with this 3 day dose of powerful medicine but I really appreciate the extra energy that accompanies it. I have to go off the disease modifying medication Ocrevus that I’ve been on for almost 2 years so as much as I dislike steroids, I’m out of other treatment options. Life is not slowing down so neither can I.
With Father's Day weekend approaching I can't help but think about my own Dad who's been gone for 19 years now. I had only been diagnosed with MS for a short time when he passed but he was devastated when I initially shared the news with him as most fathers would be. Like many of us 22 years ago, my Dad's only point of reference for someone having MS was Annette Funicello who was wheelchair bound by the time I was diagnosed. I think my Dad would be proud of the way I've navigated this disease over the years but as much as I miss him, I'm relieved that he doesn't have to see me on my bad days now. As a parent of young adults myself, I can only imagine the frustration and helplessness he would probably feel by not being able to "fix me." My Dad died suddenly of a heart attack but I often wonder if his cause of death wasn't really a broken heart from witnessing his oldest child battle a baffling illness which there was and still is no cure for.
Hello World. This is a blog we created to give any one affected by MS in any way a constructive way to communicate with others going through the same challenges.