Wednesday, September 23, 2009

What MS Feels Like To Me...

It struck me that I didn't share what symptoms I have on a given day! Geez, how can I utilize this as a therapizing blessing if I don't do at least that much? If nothing else, it will give those around me a better understanding of why I may act the way I do. Ok no, ms probably has nothing to do with my behavior. I guess I should own up to that honestly!

From here on out, MS will be called ms. It doesn't deserve to be capitalized, in my opinion.

I would say my first symptoms were cognitive...but I don't really remember. Oh come on, that's funny! Anyway, I worked in a company where everyone was assigned a key code to punch in with. Just 4 easy numbers. Can't tell ya how many times I set the alarm off just trying to get in! I didn't make any errors within my actual work, nor did I forget things where my kids were concerned. It just started as things like that stupid access code, my phonemail password, my computer logins, etc. I chalked it up to aging. 30 is the new 80, right?

Nerve Pain - (the burning, tingling, sharp sensations) in various parts of my body. My back felt sunburnt. Occasionally, I'd be having a conversation and get a sharp pain in the mouth and up the face. Remember chomping down on tin foil with your back teeth as a kid? Yeah, yeah! It felt just like that! Except there was no tin foil... Again, writing off the fact that something big was happening with my health, I chalked it up to multiple sports injuries. It was coincidence that the pain in my face was near where I had a couple of teeth knocked loose in a ball game. Oh yeah...I scored the run AND have a nice pair of false teeth to show for it! But I soon learned that my old injuries had nothing to do with these strange happenings.

Mobility - I noticed I was unable to walk my usual couple of miles per day for exercise, because my foot had a numb spot in it that would eventually make my legs go numb in a pattern similar to the inseam of your pants? It would wash down the outside of one leg, then up the inside, then cross over to the inside of the opposite leg, then the outside...and BANG! Down I'd go! Though I was quite round back then, I wasn't Weeble-esque enough to "wobble but not fall down". Oh did I fall! My solution at the time? Don't exercise...that stuff'll kill ya!

Vibrations - Oh behave. Not even going to say where I felt it! Rest assured, I've already heard and made every joke imaginable. Anyway, moving on! It was so strong that I could not sleep through it. It was beyond me how anyone sitting next to me on the sofa or laying next to me at bedtime couldn't feel it! I remember my parents buying a recliner with massager built in, thinking it would help my pain? I put the massager on and about went through the ceiling! That sensation, similar to a massager, is identical to the vibrations I felt. Good times!

Retro'ing - I call it that, because my neurologist didn't have a medical term. For example, I picked my kids (then only about 3 and 2 yrs old) up from my parents' house after work one day. I drove to my childhood home, pulled up out front, and it hit me...omg...I don't live here! I then tried to call my mom, because it's just what I do when the crap hits the fan, and I dialed my childhood phone number! Hey! You're not my mom! Admittedly, I was pretty scared that day. I remember my daughter asking why we were stopped there, and all I could say was, "I don't know, sweetie...I don't know". Not sure what came over me, but I regrouped and was able to get us all to the correct house!

Emotional Incontinence! Yes, FB friends...it's real. Even Wiki knows. [1] Patients may find themselves laughing uncontrollably at something that is only moderately humorous, being unable to stop themselves for several minutes. Episodes may also be mood-incongruent: a patient might laugh uncontrollably when angry or frustrated, for example. Come to think of it, I've been like this all my life!

Visual Disturbance - I can't forget about my "eye flies". I have black spots in my field of vision that float and dart around like flies. Because I bore easily, I consider them a blessing from God, because they keep me busy. Like when I'm in a boring meeting for work? Bored no more...I watch my eye flies!

Vestibular - misjudging myself in space! That's the funniest one I get! It's always the right side of me that catches the corner of the table, the door knob, or even the pillar in the middle of a room. Walls that slightly jut out for design? Oh yeah, I've walked right into them. I also have a nice flattened out spot on the right side rear of my pretty car. Stupid fence. It so wasn't there when I started pulling out...right? So on those days, I make sure to park away from everyone else!

Urinary Urgency - Probably the most inconvenient and bothersome symptom I have is bladder stuff. I have spent the bulk of my children's' field trips in the rest room. I know that the public restroom stalls are largely made by a company called Hiny Hiders. I'm blessed that my sessions with my students are 45 minutes long, because I can't hold it any longer than that. I have a friend who told me to try Depends if I'm on a trip or at a venue like say...Dorney Park...and don't want to keep running to the ladies' room? I haven't been able to do it out of pride. I feel like my mother will appear out of nowhere and slap me for knowingly peeing in my diaper. But I'll tell ya, the thought has crossed my mind. Maybe when I'm 40! Would anyone mind if I were urinating as I was having a conversation with them? I guess as long as I didn't say, "whew! That's better" afterwards?

Fatigue - oooooh yeah. I'm all for implementing a corporate naptime. Except my naps are hours long. There have been times I've said out loud, "you gotta get up"...and I meant me! I have willed myself out of bed on more occasions than I care to admit. Yet 8pm comes and I'm wide awake! Can't get to sleep at night, can't get up in the morning, fight to stay awake all day. Hey wait...I think maybe 37 is the new 17! 'Cause that's how I was back then!

Well, I think that's it for symptoms.

Over the years, I've learned not to focus too much attention on how I feel, because then I'm not able to focus on life! One thing my dear friend/chiropractor always talked about was "quality of life" and "affect". Heart you for instilling that in me, CST:-) But really, her words apply to all of us. I can't live the quality of life that God would have me live if I'm stuck on every trip to the bathroom, every weird pain, or fatigue. I try to count blessings one by one, not symptoms. Emphasis on the word "try"!

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