Saturday, May 31, 2014

One Year Down, How Many to Go?

With the month of May coming to a close I'm reminded of how quickly this last year has went by.

Many things have changed, some good and some that I find hard to wrap my mind around, those of which aren't mentioned below :)

I realized very quickly at how stress can make an MS relapse happen in the blink of an eye with back to back flare ups last summer. After a family vacation to Destin I switched over to a new position with a marketing firm that's much closer to home.

We began settling into our new hometown and found a church with great couples that welcomed us with open arms. Having that church family in our lives this past year has been such a blessing and exciting as our family begins to build new relationships.

Thanksgiving, Christmas and the new year all came quickly and was over before we could say Merry Christmas.

I lasted the whole year with only suffering two relapses, a job change, a new church, several quick trips to see family and the continuous ebb and flow of life. What I mean by life is laundry and cooking, all while putting my superwoman outfit on and tackling the marketing world on a daily basis.

In the back of my mind, I wondered throughout the first year if my treatment was working and if my body was progressing for the worst.

The only way to know is to sit through the spaceship simulator the doctors call an MRI.

At my one year check up and MRI results, there was only progression of one new lesion in my brain and zero on my spine.

While there is progression and new white matter found, it is overall a positive result that I'm extremely happy with.

I'm grateful to all of my family and friends who have continued giving their support and prayers throughout the year. I'm looking forward to the time where I can say I used to have MS. But until then, I'll ramble along through life and try my best not to fall on my face.

Wednesday, May 7, 2014

Fatigue: A Daily Struggle

The National Multiple Sclerosis Society states that fatigue occurs in 80 percent of patients who suffer from multiple sclerosis. In hot or humid weather, fatigue may increase throughout the day.

I live in Texas - It's hot and humid every day so you can bet that I'm screwed on that one. 

Fatigue. It hurts, it's unbearable yet somehow we all seem to open our eyes every morning, slap a smile on our face and take on the day (with the help of a few cups of coffee).

If you hear anyone with MS say "Man, I'm so flippin' tired" that doesn't mean they went to bed at 2am and woke up at 6 to take on the day. That usually means you held your eyes open until a little past 8pm and fell asleep while watching The Voice. 

I'm going to attempt to explain what fatigue feels like to those who don't have MS, or any other autoimmune disease.

Fatigue makes your head hurt. Every.Single.Day. You can only take so much Tylenol before needing a liver transplant. (If you're a member of my family, you're on the short list if I ever need one). 

Fatigue makes you nauseous. This one sounds strange but you are so tired that you feel like you need to vomit. You might be out with friends for dinner when nothing sounds appetizing and you just need a double shot espresso from Starbucks to keep your eyes open.

Fatigue makes it hard to concentrate. If you work a full-time job as I do, you understand this all too well. Those times when your vision goes blurry and you just need to give your head a shake, say a quick prayer and re-focus? Happens all of the time and there's absolutely nothing you can do about it.

Lastly, fatigue makes you unable to sleep. Funny, right? Many people with MS who all suffer from fatigue suffer from insomnia as well. The nights where you just need an extra hour you end up tossing and turning for the entire night. 

It's difficult to wrap your mind around if you haven't experienced this, but sometimes it's truly difficult to just 'Do-Life'. 

The hardest days for me are Thursday and especially Friday. I've given all I have to push through the beginning of the work week and have nothing left. Exhausted doesn't even touch how I feel on those days.

So how do we beat it?

Some say exercise which I think helps my body in general but I definitely feel exhausted afterwards. 

Some say to eat like a rabbit (vegetarian) which might help battle fatigue.

For me? I haven't found a way to manage it and I'm not afraid to say it. I look forward to weekends where I am able to save up energy for the next week and also spend way too much money at the local Starbucks. 

Who knows, but at this point, it's 5:28pm and I don't even think supper time is worth me staying up until 6pm for, don't judge.