Posted By Jacob Jans, Editor

Why I Won’t Let Multiple Scleroisis Beat Me.

Written by CureMS

I have multiple sclerosis. In a nutshell, MS is the wearing away of myelin, the protective nerve covering. Remember when you were a kid and ran out in the snow to play without your gloves then once your hands became frozen you ran back inside to warm them? But warming them hurt too! Well this is what it feels like to have exposed or frayed nerve endings.

I have lived with this still deadly disease since 1999. If you saw me on the street, and I was without my cane, you could not tell that I have MS. That is both a blessing and a curse. I am blessed that I do not have the severe debilitating condition that has left some people crippled and in wheelchairs. I am cursed in that I am frequently treated as if absolutely nothing is amiss with me when in fact, and I hate to say this, but there is something wrong with me.

MS has taken away my balance. As a result, I tend to fall a lot and wobble. Yes it may appear as if I am drunk. I fall on average once a month. So I can’t ride a bike, and no skating, and definitely no running. However that last one has never been a problem for me. I have been told by my neurologist to ALWAYS use my cane. But one of the prime rules of mystery shopping, is to remain under the radar and don’t draw attention. So a fifty-something year old who looks like a forty-something year old walking in with a cane tends to get noticed. Therefore I leave the cane in the car when I do shops, but not without hesitation. I have fallen once on a shop without my cane. “Fortunately” it was in the parking lot. But it sure drew a crowd! How’s that for remaining inconspicuous.

The cane is my only outward appearance of MS. “Cogfog”, which is a legitimate term in the MS medical community, is one of my worst inward disabilities. Cogfog happens when cognitive brain cells are attacked by wayward nerves. I have my Bachelor’s Degree in Mathematics. I have been mathematical since elementary school. Now that I have MS I sometimes count on my fingers and have trouble doing simple addition and subtraction. Timings frequently throw me off and it is difficult to remember or understand what someone just said. To adapt, I check numbers and times, not just once or twice, but at least three times. To overcome the memory aspect, I secretly record all shops, with the blessing of my state. I can then play back the tape and catch things I did not remember. But all this takes time, a lot of time, which leads to the most complained about impact on people with multiple sclerosis, chronic fatigue.

Chronic fatigue is not like your average spell of being tired. It goes way beyond tired. Combined with cogfog, chronic fatigue becomes an inability to think and function, with no energy at all. Lucky for me, it does not come on all at once and I know my limits. I have about four to six good hours in a day. So within this time frame, two shops on any given day is the most I will allow myself and I try to schedule a free day in between shops. I prefer that at least one those shops have a 24 hour turnaround requirement for the report, key word here being “prefer”. I have asked and been given the extension sometimes. And then there are always times when I go over the 12 hour time frame for submitting reports. Oomph, there’s that darn timing problem.

Alongside chronic fatigue is another symptom that limits my shopping, and that is pain. For the most part, a strict medication routine keeps pain to a minimum. But some pain is difficult to control. Typing reports increases that pain, and I am not just making that up! Thankfully there is a little electronic stimulator (Tens Unit) worn on my back that keeps those frayed nerves moving. Once I forgot to take the unit off before going on a shop and I could swear the representative thought I was recording her!

Finally, when I was working full time, I kept my condition secret. Those few co-workers who knew I had MS could not understand why I was not open about it. Fear of reprisal was the answer. People then and today, begin to treat me as though I cannot work. Yes, I will admit sometimes I really like being treated that way, especially during these hot summer months. Oh, did I mention that heat negatively impacts MS, especially out on a two-shop route? Is that a “route”? Anyway, there are still things that I can do and I can do them well given the opportunity.


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