Tuesday, September 25, 2012

"How do you do it?"

“How do you do it?” A question I hear very often! In all honesty, I don’t know how to answer that question. If you don’t know “My Situation”… let me shed some light on it for you.

I was diagnosed two-years ago, August 2010, at the age of 22. I will be 25 in less than a month and it’s not been an easy journey, thus far…

I have two kids, both boys, ages 3 & 6. I have been married to my best friend for almost 7 years and I am a patient advocate for MS. From what I understand, I didn’t take me long to want to do something about my MS. I get confused by this statement at times, because what was expected…? Obviously I was upset and mad and scared and I still am. But am I supposed to stop living my life because of MS? I couldn’t just stop being a mom for my kids… to grieve with my diagnosis. My family and close friends know that I’m a very stubborn person, so I wasn’t just going to “lie down and take it”… so to say.

Since being diagnosed, I am now on my third DMD, Copaxone. I was diagnosed two-weeks after receiving my Associates Degree in Criminal Justice. The day before my interview at the county jail, I was diagnosed, actually. I’ve been denied Social Security numerous times (because I’m not blind and/or deaf from what the papers say). After my diagnosis I had decided to start back at school after a semester break, to work towards receiving my Bachelors in Criminal Justice. Well, I’ve stopped going to college since then… Not because I wanted to… but I was going to get “dropped” if I didn’t. I had started off at the University (that I did from home) in the honors program, and after one semester, I was barely passing getting very close to the “minimum” GPA.

I can honestly say, if it wasn’t for the support from my family and friends… I wouldn’t be doing anything. I’ve found ways to make things easier for myself around the house and with the kids… but that’s not even a “fix” a lot of the time. It’s the help I receive with the kids and the house, etc. that makes life easier.

When it comes to me having MS… it’s made me look at life differently and I have since changed my attitude on almost everything. I have “accepted” my diagnosis, but that doesn’t mean that I’m not still… angry, upset, depressed, confused… the list is endless.

How can someone completely “accept” his or her diagnosis of an illness, when there is so much unknown about it. They don’t know what causes MS, they don’t know how to stop the attacks and they don’t know how to cure it… Everyday you wake up, you honestly don’t know what to expect. I guess that’s the truth in everyone’s life… but I’m talking about simply getting out of bed. My first thoughts are, “What’s going to bother me the most today?? What’s going to hurt me the most today?? Will I need more help than normal??”
So while I’m mad… it’s like a confused mad, cause I don’t even ‘know’ what I’m mad at… Mad at my body for betraying me? Yeah… that’s a big one. Everyone is always worried about someone they love betraying them… but what if it’s your own body and no one has answers as to WHY! Yes, they know how it happens… but WHY? That’s the million-dollar question.

Then there are those statements, “Well, you did it yesterday, why can’t you today?” “You could walk yesterday.” “You were full of energy yesterday.” … Yeah .. well thanks for rubbing it in my face that my body can do whatever it wants when it wants to because I have MS… I’m not trying to be mean… I know that other people are clueless as to what those with MS have to REALLY go through… but sometimes it’s just like… I just don’t want to hear any comments… How about… “How are you doing today?”… “What’s in the news with MS?”… Things like that.

Yeah I know, people who have MS talk about it a lot… and it gets on some peoples nerves. Well this is for those “some people”… If you had or have a kid… would it be rude of me to think you talk about your kids too much? Yes… it would because kids are LIFE CHANGING. Just like an MS diagnosis, it’s LIFE CHANGING… except the fact that kids are a blessing and MS… well… it’s a pain in the you know what.

So in all reality, there is no explanation as to “How do I do it?” It’s “Why do I do it?” I’m not going to stop living my life because of MS… that’s just not who I am. Yes, I’ve had to change my life around… yes it keeps me from doing things… but what OTHER choice do I have? If I was letting MS take OVER my life… I would live in a place that is never too hot and never too cold & alone. Because the MS “triggers” are thought to be Extreme Heat, Extreme Cold and Extreme Stress. So obviously, Texas isn’t the best place for me… so I’m supposed to up and move away from my family and our established lives here? Yes, I can’t stand the heat… but you have to think reasonably.

If people looked closer, they would realized that in the summer time, I don’t leave the AC much… I’m not trying to be rude… I’m just trying not to end up in a wheelchair… again.

Think of me as a “used” battery… and those that are not sick, are a new battery, right out of the package every morning. We all know, that used batteries do not compare to the power (energy) of a NEW battery. So while those who are not sick, wake up refreshed and have enough energy to make it through the day doing “the simple tasks” of work, school, errands, kids, house work, etc. Yes they are tired when they get home, but they did it… they aren’t going to wake up tomorrow and be in excruciating pain from it. Well, those with MS (the used battery), wake up not full of energy, but completely exhausted, no matter how long they slept. Then we have to make it through the day, and we just have to be housewives, like myself, but it’s exhausting… if we had to push ourselves to do more than simple little things (like go to the grocery store), we know tomorrow our “battery level” will be lower and that will not make things run as smoothly… meaning our bodies will tell us, “Hey, you did too much yesterday, so you are going to pay for it for a day, a week, maybe more.” Does that make it easier to understand?

Do I push myself, knowing I will pay for it… sometimes but it’s usually worth it. To have that one-day where, I know I will get beat to hell by MS at some point, but at least I did what I wanted to do that one day and I had fun and I was “normal”. That doesn’t mean that my symptoms have gone away for that one day, there is no “on and off” switch. It just means that I pushed through my symptoms. Now if I was to “push my limits” everyday… that’s just plain crazy.

I don’t know what my future holds… I never knew I would be living with an incurable mystery disease… so I’m taking it day-by-day. I figure, I’ve already been complete wheel chair bound, had one side of my face paralyzed. Yes, I’ve lost vision, hearing and I’m weak on my right side, it’s never improved… there is no guarantee to “recover” from a flare. I’ve been to speech therapy, to help me talk “normal” again; I’ve been to occupational therapy, to help me find ways to be a “housewife” with my limitations; I’ve been to physical therapy to help me regain my strength and balance. Notice I used the word “help” and not “fix” … I can help myself improve my quality of life, but I cannot fix the damage that’s been done. So what I’ve been through in the past with exacerbations, it can happen again… I don’t necessarily have to have a “relapse” meaning; I don’t have to get a NEW lesion, to go through what I’ve been through before. If that lesion gets irritated and inflamed, I just might have to start all over again… and that’s something I have to live with everyday.

I choose to try and be as positive as I can, but even the strong break down. I usually let out my anger and frustrations when I’m alone… but that’s how I get it out of my system when I’m overwhelmed with the feeling. So, you might see me as ALWAYS positive and ALWAYS happy… I try to be around other people, because I don’t want other people to have to feel what I have to feel… to know what I have to go through everyday. By telling you all of this, you can get an “understanding” of what I personally go through, but you will never know.

Being a mother to two wonderful boys, a wife to an amazing husband, a loved one to my supportive family, a friend to my amazing friends and a patient advocate for all of those who live with MS, is “Why I do what I do…”



  1. Thank you for speaking so well about what we are living with. It so helps me to know that I am not alone in these kinds of feelings. I consider myself 'blessed', if you will, as my MS did not show up until in my middle 50's. I am sad for those such as yourself who have been struck by this disease so young.

  2. Thank you Ashley, for your knowledge in expressing yourself while living with MS. I was dx in 2005, the only thing , it has not been a easy journey. But, its getting much better, I have turned to hoalistic healing, and generating a positive attitude! Truly enjoyed your blog, thank you! Jennifer Lindsay