Tuesday, October 2, 2012

Symptoms

About a week ago, a great graphic popped up on Facebook from Multiple Sclerosis Information.  They said share and share with anyone who will listen to help spread awareness about this often misunderstood disease.  I am sharing that graphic here, and talking about my symptoms, which I haven't done a whole lot of up to this point.

Some people will have a few of these symptoms and have them all of the time.  They will get worse with stress, certain weather conditions or if they are otherwise ill.  Some people will only have one symptom and have it for a week and that will be enough to get a diagnosis.  Every person who is diagnosed with this disease is different and should be treated as an individual.  There are also what are known as "exacerbations"  or 'flair-ups".  More on that in another post...


Most people are usually taken by surprise when they find out that I have MS- because I don't "look sick".  Ummm, thanks?  Then they always ask what my symptoms are.  Even people that I don't really know.  That takes me off guard.  Having had 3 kids, it reminds me kind of like those times a stranger would put their hands on my pregnant belly and ask how much longer.  Only this time I wonder if they really want to know how many times my bladder didn't work quite how it was supposed to.  So, I typically stick to the muscle symptoms.  And the memory loss.  And the tingling that has turned into pain.

My legs... It started off as a weird kind of tingling, almost like pins and needles-but not quite.  It was last winter, though, so I thought I just couldn't warm up.  No big deal.

Then my memory went.  Stupid random stuff that I know.  Song lyrics, movie quotes, random trivia.  But also important stuff.  My address and phone number.  My best friend's phone number. Stuff I use every day.

Then I started losing focus.  Brain fog... I would forget stuff going from one room to the next.  Or going from the stove to the refrigerator to get an ingredient for dinner and I would have to go back to the stove and run down the whole list again.  I also started not being able to read if anything else was going on in the room.  I couldn't carry on a conversation with someone because I would lose my train of thought in the middle of a sentence or start combining the end of one word with the beginning of the next word. It got to the point where I would not be able to think of a word that I wanted to use or what something was.  I know what I am talking about, but can't think of what that thing is.  I can describe it to you, just can't tell you the name of it.  Ugh.  I hated talking to people, especially on the phone!

Possibly worse of all was when the fatigue hit.  Worse in the sense that it is not taken seriously.  It hit, and it hit hard for over a month.  People would tell me, "Oh, I know what you mean.  I was so tired last night!"  And I would want to tell them that I was tired, too- after I was in labor for 20 hours with my first child!  This isn't tired.  This is different.  This is up and going after a full night's sleep and  then 2 hours after getting up, your whole body hurts and you can't keep your eyes open even if you are standing on your feet.  It is like you ran head first into a wall and you can't figure out what you did to make you want to go climb in bed and sleep for a year.  You didn't stay up late last night, you didn't party this weekend, it's not a rough week at work...you just got up and had a cup of coffee and took the kids to school.

Luckily, my diagnosis was relatively fast.  There is data that suggests the average MS patient takes 4-5 years to get diagnosed.  I took 8 months.  It felt like a long 8 months, but at least I have a plan of attack.  I know what is wrong with me and can look for ways to adjust my life to make it easier.  There is no cure, but I can work with something if I know what I'm working with.

If you know someone with MS, know that stress can make their symptoms worse.  Extreme temperatures can make them worse, also.  Evidently, cold temperatures can affect some people, too.  I am finding that I can't warm up easily so I am cold and in pain and then all of the sudden I will be too hot.  Lots of fun.  And some patients with MS might have a handicap parking pass but "look normal".  Don't make any assumptions.  They may need it because too much walking will have them in a wheelchair later on or maybe the next day.  They are not lazy and they are not faking it. That is how this disease works with some people.

All of my symptoms are the same except my legs which are now in pain instead of tingling and my memory has actually gotten better as far as number-type items.   I'm not going to say it isn't a hard adjustment.  I'm not going to say there aren't some days I want to cry and ask, "Why me?"  But that takes too much energy.  I need that energy to stay positive for my girls.  What kind of example am I going to set for them if they see their mother not fighting this disease?  I stay positive for my husband.  I plan on driving him crazy for another 55 years, at least, because I've had so much fun the last 14.  So I fight. I'm an MS Warrior.




2 comments:

  1. thanks for that informative post. i admit that i didn't know about a lot of those symptoms before. keep up the good fight, jaime!

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