I'm sitting here trying to live in the moment because life seems to be moving so fast right now. Our granddaughters have turned into preteens overnight it seems, our kids are all accomplished adults and the days appear to be flying by at a dizzyingly frenetic, pace. Today is the first time in weeks that I've even had a moment to read a good book, one of my very favorite activities. I'm trying to just slow down enough to appreciate all the blessings in my life especially those who take the time to read these blogs. Thank you for your love, support and encouragement as I share with you the daily challenges of living with MS. My sincere hope if that you too can slow down enough to really appreciate all the good in your life.
Every Wednesday I drive an hour away from my home for hippotherapy or therapeutic horseback riding at Equestrian Connection in Lake Forest. There are a ton of benefits to riding a horse for people with mobility issues including help with gait, balance, coordination, strength and cognition problems. I had a new instructor today who had received the message loud and clear to push me beyond my comfort level. Sometimes it takes a new set of eyes to really challenge the status quo because I've been riding for over 3 years now and am more than ready to try new skills. Today I got to take the horse on a fast trot off lead which initially frightened me a bit since it was the first time but I did it and am so proud of my small accomplishment. Sport of any kind can be a confidence booster, especially if you have a disability. Today has me wondering what other athletic endeavor I might be missing out on because of what I perceive are my limitations. I used to be a pretty decent skier when I was younger so that might be something to try again with modifications of course. The moral of this story is that we are all capable of more than we think possible regardless of our physical condition so live your life to the fullest.
The next time you walk into any public venue like a restaurant, bar or entertainment facility of any kind, notice how inaccessible it might be for someone with mobility issues. I think you might be surprised at how little attention is paid to the space between tables, locations of the restrooms, and even the amount of stairs dispersed everywhere. We had good friends in town this last weekend so we made the most of all that Chicago has to offer. We went to a small neighborhood bar that was so packed that even able bodied people struggled to maneuver around. The next night we all went to the Improv in Schaumburg, a fairly new club which was definitely built after the enactment of the Americans with Disabilities Act (ADA) which prohibits discrimination against people with disabilities in several areas including public spaces. Although there was an elevator to get up to the club, we had to stand in a long line for an extended time before being let in to see the show. Fortunately, our friends scrambled to find me a chair to sit in while we waited. I knew I would most likely have to go to the facilities at least once which were up some stairs and quite a distance from where we sat. Once again, our friend Mike helped me navigate through the crowds and get up the stairs when I had to go but I felt bad that he had to miss any of the performance. On Saturday night we ate at this fabulous Italian ristorante called Quartino where the tables were so packed in, it would have been impossible to get a wheelchair in there if I had needed that accommodation. After some great food and wine, we all decided to go around the corner to the Redhead Piano Bar where once again, my husband hustled to find me a seat so we could all listen to the music. It ended up being such a fun-filled few days that I feel extremely fortunate to have been a part of but I can't help but think how much more enjoyable it might have been for both myself and my friends and family had everything been even a fraction easier. It can be an eye-opening experience to witness how little we value people with disabilities as a society so please, when you get the chance, speak up for those of us with accessibility issues because someday it could be you who needs the help.
I consider myself an optimistic person but all my posturing and positivity feels pointless in the face of MS somedays. Just when I start feeling like, "Yes, I can do this because I'm stronger than this disease" I get yet another UTI or have a day where getting out of my pj's seems like a major undertaking. Fortunately I have a very short memory of the bad days, always finding a reason to stay hopeful that tomorrow will be better and it usually is. Today I am excited to get a new piece of medical equipment that will improve my mobility called a Bioness Functional Stimulation System. It's a cuff that wraps around my knee to activate the neuromuscular pathways necessary for a proper gait. I tried this device out many years ago but it was too cost prohibitive at the time. I am keeping my fingers and toes crossed that insurance will cover it this go around but if not, I'm hopeful that we'll find a way to get it anyway.
Ego takes everything personally but the power of awareness is the first step in acceptance of ourselves. I've been listening to a great podcast from the spiritual teacher Eckhart Tolle who's forcing me to really examine how I see myself in this world. My ego has me convinced that I am doing everything possible to live my best life for someone with MS to the point where I can become immediately defensive when well-meaning friends and family kindly suggest an alternative treatment option I have yet to try. Whenever this happens, my instinct is to internalize the comment because, of course, I feel like they couldn't possibly understand the pain I'm in. Tolle suggests that when this happens, we are in our "pain body" meaning the voice in our heads is informing our reality. This is in no way a suggestion that having MS is in our heads but instead that it's natural to believe the story we have always told ourselves to the point where we can close ourselves off to to new ideas. I am human but am always striving to be better so will make a commitment going forward to keep my ego in check by being more conscious, present and open to all this life has to offer.
Our daughter and her husband are moving back to the area from out of state so we'll have all our children close by again which makes this mom's heart sing. I've really missed having her around for all the family festivities although she tried to make it home as much as possible. My daughter is fearless facing whatever life throws at her with grace and determination so it came as a shock to me that the almost 4 years she's been away has been as hard on her as it has been on me. When she gave notice at the law firm she's currently working for it surprised even her how many tears sprung up when she expressed some deep-seated fears she's been carrying around about my precarious health situation. It dawned on me that because she's not around me on a day to day basis, she especially notices me getting progressively worse and that scares her to death. I can only imagine the fear and helplessness a close family member must feel when they see their loved one struggling knowing there's nothing they can do about it. I can deal with this disease but it really makes me angry to see my kids so frightened of what MS will do next but this awful disease will never take away the close family bond we share and for that I am eternally grateful
Leave it to your family to point out that you're losing it. I know that my husband and adult children can get frustrated with my forgetfulness, spaciness and general confusion but my fuzzy brain downright petrifies me these days. I know that many people struggle with memory and confusion as they age but I suspect that some of my issues are MS related. This disease has already taken so much away from me that these latest cognition issues scare the S--T out of me. I find myself becoming more reticent to ask for clarification or more information especially from my family because they won't hesitate to point out if it's something they've already told me. My grandmother struggled with dementia for years before she passed so I can't help but think that maybe this brain fog is more than MS or getting older but could possibly be something more serious that I've inherited. I've always struggled with concentration so maybe it's as simple as slowing down to really listen when my family tells me something I might need to know. I choose to believe that these latest "brain farts" are manageable because the alternative explanation is just too frightening to accept.
According to my mom and my younger siblings I was always bossy. Mom likes to tell the story of looking outside to see me sitting on top of a cinder block fence directing all the neighborhood kids in whatever game we were playing at the time. As I got into high school and my mom went to work full -time, my parents counted on me to watch after my brothers and sister, a responsibility that I probably took a little too seriously on hindsight. I used to make up games to get them to help with all the household chores, a skill set that came in handy when I went into retail management. But now that I am home on disability and getting around slower than ever, my poor husband is getting the brunt of my fatigue which I feel really bad about. I am always looking for ways to conserve my energy so my husband, who is an excellent caregiver, does way more around the house than he would have to if I were more able -bodied. I didn't realize how bad it had gotten until this very patient man called me out on it last night. I like to think of myself as independent but clearly didn't realize how much I was taking my husband for granted.The first step to being a better partner is recognition that there's a problem so now that I know better, I will do better.
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.
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.