I was diagnosed with MS in April of 2014. At the time, I didn’t have many symptoms. I had some tingling and numbness and fatigue for sure but I could still run to keep up with my then 2 1/2 and almost 5 year old extremely active kids. I started Avonex right away but had a new lesion and lost partial feeling in my left arm by August so I switched to Gilenya. I have slowly lost the balance and coordination needed to run or do aerobics and I was too tired and too busy to care.
Relieved to have a concrete diagnosis
My diagnosis wasn’t really a crisis for me. I had been evaluated for MS 10 years before my actual diagnosis but MS had been ruled out. When I was finally diagnosed with MS, I was actually relieved to have a concrete explanation for my symptoms - especially the extreme fatigue. I accepted my diagnosis and pledged to never let it depress or discourage me. And I was successful in staying positive but I was also just sitting back and watching myself gain weight, lose muscle, and get generally weaker and more fatigued. I didn’t think I could do anything about it. I accepted my fate and blamed MS for my increasing disability.
Now, the truth is that I AM more disabled than I was in 2014. I have a foot drop and I have only about 20% feeling on the left side of my body. Strengthening my leg muscles does nothing to improve any of the left side issues because the problems stem from lesions in my brain.
My weight gain
However, my weight gain was really bothering me. I thought about a solution for a LONG time. About a year and a half or so ago I decided to try getting on my bike to see if my balance issues would prevent me from riding and discovered they didn’t! I could ride a bike as long as my husband was there to help me get on and off the bike. I had gained so much weight and lost so much strength though that it was very difficult to ride very far.
Tried a modified fasting diet
And then I saw an article about different diets. I knew I didn’t have the willpower anymore to restrict calories - especially with a husband who has a fast metabolism and a healthy appetite and 2 active kids with fast metabolisms who are only in the 10th percentile for weight and need to eat all the time. I had tried fasting 2 days a week and discovered I just can’t do it. But the diet that caught my eye was a modified fasting diet where you choose an 8 hour period in each day that you are allowed to eat - anything you want. But you don’t eat anything outside those hours. This diet is supposed to kick start your metabolism and help you lose weight. I decided to give it a try after visiting my neurologist in mid-January of this year. I chose 11am to 7pm as my 8 hour block which cut out breakfast and evening snacking. I stuck with it and as of today, in mid-July, I have lost 40lbs.
My strength and energy have improved
After my success in losing weight, we started riding bikes as a family and I started doing some simple strength training and toning exercises at home and I’m getting stronger and more able to handle long bike rides and hills aren’t as difficult for me. My energy has improved too and I only need to lose 10 more pounds to get to where I want to be which is actually smaller than I have been in my entire marriage of 21 years.
Overcoming MS and age-related challenges
I am 48 years old and I thought my age would work against me even if I could overcome the challenges presented by MS. But I’m thrilled I’ve been able to overcome those age-related challenges as well.
One thing that finally motivated me to at least TRY was that my Aunt had fallen a couple of times and she had allowed herself to get so weak that she couldn’t get up or get to a phone to call for help so just laid on the floor for days until someone found her. I didn’t want that to be me.
Want to get off the MRI tray with ease next time!
Also, I HATE asking for help. Along with a neurology visit in January, I had an MRI. And when it was over, I really struggled to get myself off that tray thing and I refused to ask for help. I want to get off that thing with ease next time!
Does your employer provide workplace accommodations due to your MS?