Wednesday, February 15, 2012

You don't realize what you have...


You don’t realize what you have until it’s gone. This saying is often used when it comes to relationships…. But I’m referring to everyday life. After being diagnosed with MS at the age of 22 in 2010… I’ve come to realize what I had that at one point I took for granted.

I was an athlete growing up… and a klutz all at the same time. I thought that when I broke a bone and couldn’t play any sports it was the end of the world. But in reality, my wounds would heal and I would play again soon. That’s not the case anymore…

My wounds from MS cannot be healed, I can no longer do things that I once was able to. I see other people my age and actually people in general, taking things for granted in their everyday life.

Most people don’t have to concentrate when they walk, to make sure they don’t lose their balance and fall. Most people don’t have to focus when they are holding something to make sure their hands don’t lose grip of whatever they are holding.

Most people can make it through the day without needing a nap and they can also make it through the day without forgetting what they were talking about mid-sentence.

These are things I have to worry about everyday. Sometimes I get angry at how “easy” others have it and yet they don’t realize it and take it for granted. It’s a huge slap in the face when you are in your young twenties and you rely on assistive devices for your everyday life.

Being in Texas, everyone complains about the weather… but mainly because it’s annoying to them that it snows one day and the next day there is a high of 75. While yes it is annoying, I complain about the weather change for other reasons… because my symptoms are increased with the constant weather change. I can tell when a weather change is coming because my whole body just doesn’t want to function the way it should, medications or no medications.

When it comes to parenting… it must be nice to be able to go on field trips with your kids for their school…. And have the energy to keep up with your kids. I try my hardest for my kids not to be affected by my MS, but sometimes I can’t dodge it.

Most people complain that they have to do laundry and clean the house… while I sit here and wish I could do the laundry and clean the house like I used to. If I’m going to clean the house, that’s my plan for the day… Nothing else can be done because the cleaning will take every bit of energy that I have.

While I get angry at how “easy” others have it… I can’t be mad at them personally, just mad at the situation. It is really upsetting that I had to “take a break” from college, because my GPA was suffering due to my cognitive dysfunction. I went from being in honors, to not being in school at all, because my GPA dropped horribly just in one semester.

It’s not easy for someone as stubborn as myself, to admit to their disabilities…. But yet I’m sitting here fighting Social Security for disability. It’s embarrassing… for one to have to admit that I’m limited in what I can do… but then to have to sit here and fight to prove it.

Multiple Sclerosis isn’t just a illness, it’s a life changing diagnosis. Not for everyone, because everyone diagnosed with Multiple Sclerosis is affected differently. Some can go their whole life, living “normal”…. While others (like myself) must reevaluate everything we once knew.

Some people say, “Oh, you’re just using your MS as an excuse.” Really???? Why would I want to go through this… why would I want to be limited… why would I not want to do something I once could… These things can’t just be “made up” and the pain and symptoms we experience can’t be explained… and there is nothing to compare it to.

Being diagnosed with Multiple Sclerosis has made me redefine myself… Instead of being that girl who was outgoing and up for anything and always doing something (mostly outside)…. I’m now that girl who lost a lot of friends, but made new ones…. Ones that I know are true because they KNOW what I go through. I am now that girl who will do what I can to help others living with MS and to get the word out about Multiple Sclerosis… I was always a strong fighter…. But now my fight has been redirected towards something else… a harder fight, but a fight that has meaning… a fight that needs to be fought… a fight for my life back. 

xoxoxo
Ashley

8 comments:

  1. thanks for the great blog! i am sure you agree that MS Blows!
    http://msblows.com

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  2. Ashley, You are one inspiring woman! I am now 50 and was diagnosed with MS in 2003. I was told for years there was nothing wrong with me, You just want pain meds, it's all in your head, you need to see a Psychiatrist, etc. I finally went to my ENT because of severe ear pain, dizziness, vertigo. He ordered an Mri of not just my sinuses but brain, head and neck. He diagnosed the MS. He referred me to my now Neurologist who had previously performed several nerve conduct studies on me for arm and hand pain. To me, He is my Hero. He cares about me and sees me ever 4 months. He estimated that I had MS at least 10 years prior to the diagnosis.
    It is amazing how some people do not get it. They don't know what We go through every day just to get through that day. I cannot speak well. I say things that make no since, I walk like a drunk, so bad I have to hang on to walls. I do have to take naps daily, sometimes I don't even get up. I drop everything, I spill everything, I have had optic neuritis 3 times since 07 and luckily my eye sight returned but not like it was. Sometimes I can't see well at all. I hate my life as it is, but I love my life with my daughter and grandsons. They are the reason I keep fighting every minute of every day.

    I love your Blog and you are an Excellent person to get the word out that MS is not a joke. It's real and unless you have it, you won't understand. I've learned that through the past 8 years.
    Stay strong, keep up your blog and I look forward to reading it each day! Thank you

    Laura Poynter From Indiana

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  3. Angela Ashley, Charlotte, NCFebruary 15, 2012 at 2:38 PM

    Hey Ashley!
    This one says exactly what I am feeling right now! It sucks! Sometimes I just want to scream obscene things at people and throw things like a temperamental child (of course, knowing me, the words would come out all wrong, and if I could actually throw something it wouldn't hit anything!) I know it isn't their fault, but seriously, why would any of us sign up for this? My own husband after being diagnosed for almost 7 yrs still doesn't get that I would love to still be teaching and have a perfect house with clean laundry all of the time. I'm going to be 35 this year and looking back, my neuro and I figure my mono when I was 19 triggered the MS. I have had fatigue issues from that time with more symptoms including migraines, gait issues, optic neuritis, and several other issues. Some have come and gone, but most have left at least some kind of lasting scar.
    I recently went on what I felt would be a "safe" field trip to a play with my 2nd grader. He has a classmate with severe brittle bone disease. The accessible bus was late and so, not knowing what size bus they were sending, we all boarded another and waited. When the other bus arrived we found out the entire class could ride with the young man, but we would have to hurry from one bus to the other. In my haste I fell down the bus stairs on to the concrete! So as to not scare the kids, I got up as quickly as I could (thank God I was wearing sunglasses so no one saw my tears) and hobbled relying much more than usual on my crutch to the other bus pretending I was ok! No more school buses for me!

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  4. Ashley, I really enjoyed your blog post! Thank you for sharing. I know exactly what you are going through. I get the same comments and feel exactly the same way and go through the same symptoms. I was diagnosed May of 2010. I lost a lot of friends too but realized they really weren't my friends. The ones I got now are true friends. My world was turned upside down. I don't know if I will ever get it back to being close to normal, but I totally agree with how others take things for granted! Frustrating!! BUT we must stay positive! Everything happens for a reason, take things one at a time. You are where you are meant to be and your becoming who you are to be. I didn't understand what this old school friend was talking about but I am beginning too now. Slowly. They looked me up when they heard I got MS! Now that is a true friend.
    I now look after "Me" first. I try to turn everything positive, sometimes that is REALLY hard. I do only what I have to and don't expect to get things done over night. I will never give up! I am too bullheaded to give in! Hang in there girl! Your not alone! HUGS

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  5. Hi Ashley-just read your blog-enjoyed it and the content very much...keep up the good work...

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  6. I really enjoyed your post. Thought maybe I was reading something I wrote..LOL! I feel excatly the same way and most people do not understand. My husband tells me all the time I use my MS as an excuse to get out of what I dont want to do. YEAH RIGHT! I wish I could still do all the things I used to. I have to come to realize that this is the new me, the new "normal" I guess. I sure wouldnt have chose this but you deal with what you are dealt. At least we arent alone in the battle!

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  7. Hi Baby. Just read your blog and once again am amazed at your strength & grace. I would like to comment as a mom whose daughter now has to deal with MS. I am always in awe at the way you manage to keep your sense of humor when I know you want to cry. I always wish I could do more for you and would take away all of your pain & symptoms. It is very frustrating to feel so helpless. But you should take some comfort in the fact that when we get out of your car in the handicap slot, people are staring @ me the old lady with a beautiful daughter. So to all those people that think MS is not that bad, walk a mile in her shoes and live with pain & awkwardness for 1 week. Bet you wont be so quick to judge. I love you.. Mom

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  8. Hire a lawyer that specializes in Social Security Issues.

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