Thursday, February 23, 2012

Symptom Awareness???

Okay, so it's almost March... and as many of you know March is MS Awareness Month! It's a time for us to make Multiple Sclerosis known throughout every city... every state. Teach people about MS and hope for a cure... hoping that the more people know about it... the better chance we have to getting support to find a cure for this illness! So, I was sitting here thinking about the awareness of Multiple Sclerosis... and I just had some thoughts I wanted to share.

While MS is the cause of the troubles I deal with on a daily basis... I feel that the definition of MS itself, doesn't let people know the actual truth of what living with MS is like. So I thought to myself... should be called Symptom Awareness... because while in the back of our minds we hope that we don't have another flare and we hope that the medication we are on is doing its job... a "flare" is not what MS is in everyday life! It's the symptoms of MS that is everyday life. We don't deal with being in a flare 24/7 - 365 days a year. It's the symptoms we deal with... and while having a flare is what causes the symptoms... we don't have to be in a flare to deal with MS.

The whole remission thing... while we are in remission, some people think that okay... they are in remission so their MS isn't active right now, so they're good. NO, that's wrong. Just because there is no active lesions going on... there is still the damage from the flares we've had in the past that cannot be repaired.

Some people think, "Oh well you are on medication for your symptoms, so yeah, you're good." WRONG. Taking medication for your symptoms... is like writing something down in pen and then using white-out to hide the mistake. White-out masks the ink, just like medications mask the symptoms... it's still there, just not as "bold".

There are some factors that need to be taken in to consideration when thinking about this... Okay, so with any medication there is a limit on how much you can take. Now, with any medication... after some time your body grows familiar with the medication to where the effect of the medication isn't as strong as it first was... so the medicine doesn't "work" like it once did because your body is used to it. Now, you think okay well I need to up my dosage... well what if you can't? What if you're at the max dosage of that certain medication, then what?

Then when some people see you... they're like "Oh you look like you're doing much better." Okay, let's put some thought in to this on why you "look" like you're doing much better. Has their been a weather change lately, Is it mid-day when all of your medication is in your system and you aren't exhausted from the day yet? Are you on steroids? Are you acting like you're a lot better... just to avoid all the comments of concern? Are your symptoms less than the day before? There are so many factors that contribute to what our day is like day in and day out that I can't even write them all down.

So, in short, what I'm trying to say is yes I want MS Awareness... I want the whole world to know what it is, so I don't have to explain it when someone asks... but I want more attention drawn to the symptoms that accompany MS. Not only in just the awareness of individuals... but in research as well. Yes I want a cure already... I don't want to live this way anymore... but I also want some kind of relief while I'm waiting on a cure. I don't want every day tasks to be a burden and drain me and make me hurt.

Stronger (What Doesn't Kill You) by Kelly Clarkson

1 comment:

  1. oh my gosh Ashley this is so how I feel that it is uncanny!!! I have tried to think of a way to explain my MS and the symptoms, but I could never find a way to. It's funny I have had to move back in with my mother and father because I have just been diagnosed with MS and...anyway, I just wanted to let you know that this is very moving and when I have a flare up (which is constantly cuz I moved a long distance and am just setting up doctor's here) anyway, my Mom keeps saying that "your getting worse Tina" I didnt know :) I know that it is just cuz she's worried about me but ya know it still bothers you. Oh well I just want to say that I am gonna Post this or share rather so that we can get a jump on March awareness :)