Tonight is my husband's 40 year high school reunion and I can't help but be a little anxious. Reunions are a little stressful for anyone but my anxiety is always a product of my health issues which I know sounds silly because by our age, most people have something they're dealing with. So I will start the day off with a workout, then get my nails done, pick out a cute outfit to wear and get my makeup done by my talented daughter. All I want is for my husband to be proud to show me off, not worried like I will be that my walking will be shaky, that the bathroom will be handy or that I'll be too fatigued to hang out for long. I need to practice what I preach, get out of my head and enjoy the camaraderie of old friends who will just be glad to see me despite my disability.
You would think the opposite would be true but the more open I can be about my fears, frustrations and falls with this stupid disease, the more empowered I feel. As the oldest of 4 children of very young parents, I always felt like I had to be so strong for my Mom,Dad and all my siblings. In fact, my sister always reminds me that our Dad would ask her why she couldn't get the kind of grades I did. My Dad was a simple man who didn't understand the harm he would cause to all of his kids by pointing out our differences in a negative way. Consequently, I always felt this immense pressure to never let my parents or anyone else down for that matter. Fast forward many years to when this disease forced me to start using mobility devices to get around. Friends with MS would gently remind me that it was not a weakness to need a cane or scooter but in fact would help preserve my limited amount of energy for other activities I wanted to participate in. I always felt like I was giving into MS stubbornly refusing any help for years. Now I know that the vulnerability to admit that I need help is the strongest thing I can do. It's refreshing to follow Selma Blair, the actress that was recently diagnosed with MS, as she proudly posts the grim reality of her daily struggles. I really admire how she bares all, literally, because she's not afraid to let people see her at her weakest. Selma understands that she might help others with her honesty which is what I aspire to do although you will not be seeing me in the buff, EVER.
When you have a disabling disease like MS, insurance is not a luxury but a necessity. My husband just changed jobs recently so there is a month and a half waiting period before our new insurance kicks in. I am literally holding my breath until we're covered again which couldn't be good for me. Sure there is COBRA if we really need it but this interim insurance is incredibly expensive so I'm trying to hold off from making any doctor visits until we're eligible for coverage from my husband's new employer. What I cannot control and is a real fear that keeps me up at nights is that I will get a bladder infection or something else that can turn serious if not treated right away. Health care costs have gotten so out of control even with good insurance but one hospitalization can put a family in a serious financial spot. I know that not everyone agrees or believes it fiscally possible but I think healthcare should be a right and not a privilege. There are plenty of people with MS, or many other illnesses for that matter, who have to choose between their expensive medications or paying their other bills. The added stress of balancing healthcare needs with any kind of financial constraints is enough to make even the healthiest person sick so our current system is a problem that needs a solution and fast.
Woke up with an achy back and tight hip flexors so went to my favorite yoga class at The Healing Triad in Bloomingdale. I enjoy this class so much because unlike other forms of exercise out there, it's a welcoming environment with no judgement. Not that the other ladies in class nor Beth the instructor care if I make it all the way through without sitting but I am a competitive person pushing myself beyond my limits most days. Today was different though as I decided to be grateful for what I COULD do instead of beating myself up about what I couldn't do. At the end of class in savasana, Beth reminds us to silently thank ourselves for taking the time and effort to get to our yoga practice which is a life lesson that would be helpful for me on a daily basis. It's better to "show up" for yourself, do the best you can and be grateful for what you can accomplish rather than avoid exercise or any activity because you might not be as good as others.
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.
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.