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I must to move to keep moving

Thursday, April 18, 2013

Multiple Sclerosis (MS) has been a part of my life longer than fitness and healthy eating. I am no different than a lot of people who decide to make true, long-term lifestyle changes due to an illness or disability. My disability just happens to be MS. I am incredibly blessed to be able to walk (mostly) unassisted after living with MS for nearly 15 years.

As cliche as it sounds, the adage that one must keep moving to keep moving is a literal reality in my life. While my MS has recently begun to affect my memory and other cognitive functions, the disease's primary target has largely been my right leg. During my "major exacerbations," I have experienced near total paralysis in that leg.

Disability from MS is typically a gradual process. In the first several years following my diagnosis, I recovered 100% after a flare-up of symptoms. That is no longer the case. Now my right foot is often riddled with a tingly/burning sensation and I battle tightness, weakness, and cramping/spasms more often not than not due to lost or weak nerve impulses.

In the past, I used my MS as an excuse not to exercise, when in truth, my body needs me to exercise because of my MS. I've always known in the back of my mind that my excess weight and sedentary lifestyle were enemies of good health, MS or not. It is more important now, than ever, for me to become strong overall so that my body can support itself where it's weak.

About six months ago, I began physical therapy (PT) for MS-related dizziness and balance issues. My PT clinic has a wellness/aftercare program that allows clients to workout under the supervision of a personal trainer with knowledge of each individual's physical limitations. Though he knows my limitations, my personal trainer does not treat me like I have MS, does not let me use my MS as an excuse not to work hard, and pushes me (in a good way). I now exercise three days per week at the PT clinic and an additional three days per week at home.

I am stronger than I've ever been, and thanks to a focus on healthier eating, I am losing weight. Since January 2013, I have lost 18 pounds and am 32 pounds away from my ultimate goal. I have been successful because my rationale for getting fit and losing weight was not focused on a vain desire to look good, but a true desire to maintain good health for as long as possible, both for my family and for myself.

While I am excited about the physical changes happening to my body, it has actually amplified some of my frustrations because now I look better than I ever have. One of my most despised phrases is, "But you look so good!" This led me to write the following on Facebook a few days ago. I was concerned that my venting would be construed as negativity and was pleasantly surprised when it was taken very positively by many people. Several even shared it.

Things you probably don’t know about how MS affects my daily life:

1. I can complete 60-70 minute, high-intensity workouts with a personal trainer several days a week, but standing at the kitchen sink doing dishes or in the shower can exhaust me.

2. I “look so good” 99% of the time, but constantly battle a fuzzy-headed “cog fog,” dizziness, and feeling off-balance and as if the floor/room is tilted. Having unpredictable dizzy spells and constantly feeling like I’ve consumed an alcoholic beverage or two is not conducive to driving, especially with children in the vehicle. When I say that I don’t drive, it doesn’t mean that I got a DUI. Just over a year ago I voluntarily stopped driving “until it got better.” It hasn’t.

3. My walking gait looks good from afar, but it is a challenge to walk in a way so as to not appear seriously intoxicated. I could not feel solid ground beneath my feet for almost two (2) years, until my physical therapist hooked me up with a weighted vest. Yes, people, calm down, it’s not an ammo vest, and I am not going to rob this convenience store.

4. Though I minored in English in college, I often commit “fatal errors” in my grammar, using the wrong, “to, too, or two,” “their, there, or they’re,” and my one of my biggest pet peeves: making plural things possessive. And, yes, I do realize how terribly written that sentence is. And that one, too.

5. Being unable to walk does not scare me. The thought of waking up one day and not recognizing my husband or one of my kids makes me want to vomit. Being unable to remember the PIN I’ve had for at least eight years to check my voicemail on my phone makes me want to pull my hair out. Having words fall into the black holes in my brain (yes, there really are black holes in my brain) during work meetings is frustrating, but by the grace of God, I work with individuals who are extremely patient and understanding.

6. No, I did not buy a $1,200.00 motorized scooter just because I am too lazy to walk around the grocery store. Despite the fact that I “look so good,” can complete long, grueling workouts, and appear to walk normal, navigating stores is one of the most difficult things for me. My brain cannot process all of the incoming stimulation from the noise, lights, and movement and propel my body forward all at the same time.

7. Yes, I am too young to have a handicapped parking permit. I’ll gladly give you the permit, but only if you’ll take my MS, too. Yup, I get frustrated with the judgmental glares, stares, and comments people think I can’t hear.

8. I love hugs. I do not love the MS hug. What a misnomer. Feeling like I can’t get enough air because of muscles spasms in the intercostals and all around my upper torso is just not fun. Oftentimes I just feel I am being squeezed by a very tight, wide band encircling my entire upper torso.

9. My family RAWKS! I don’t know what I’d do without my husband--chauffeur and MS-radar extraordinaire. I wouldn’t take care of myself as I should, that’s for sure. I’m so thankful that my kids can just laugh at me when I call them the wrong names or when what comes out of my mouth is not at all what I’d planned to say.

10. I couldn’t get through a day without my relationship with Christ. These verses have provided comfort on many a day when I’ve felt overcome with anxiety and hopelessness: “Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:7-10)
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Member Comments About This Blog Post
    You are an amazing woman. How can I complain about it being "too chilly" to go take a walk. Thank you for inspiring me!
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