I Know You are Moving Backwards, but keep Moving Forward

The hardest part is when you feel like you are moving backwards. There is not usually much warning before the symptoms come to pay a visit:

Hello, stabbing pain all over my body, vertigo, pressure of a thousand weights upon me while trying to take a step forward. The first day of this, there is still hope, then the second day comes, the third, the fourth, and the fifth, each day filled with more debilitating pain than the next. From that moment, when everything is a blur and you are no longer “you” how do you bounce back? How do you work? How do you maintain healthy relationships? How do you exercise? How do you act until it passes, that is, if you are lucky enough for it to pass — we will touch on this later. Lastly, how do you find yourself and get back on track?

You just do it…. I guess. At least, that is what I have been doing for most of my life.

This journey has been an ongoing one that some people choose to criticize and judge, and others choose to try and understand. Some people I encounter often have no idea there is anything off balance about me. Truth is, I would prefer to keep it that way. There is a shame that comes with battling chronic illness, especially if you would like to have a career, which brings me to how hard it is to get this blog down.

This blog contradicts my entire facade. In fact, while writing paragraphs like the following, I will cringe ever so slightly:

At various jobs, when having a bad day or week, I work to either not stand out or give the impression that an unhealthy state will pass… I am normal, or normal enough. My fear is that by opening up too much through a blog, someone might see it and decide that I am not cut out for the working world, or that I will not ever be healthy again.

I am lucky to have a very special crew of colleagues now. They would only offer support but what about when I meet new co-workers down the line? If one of them has thoughts about me like the ones above, it could lead to actions, ones great enough to throw me off more than I already have been. This is one of the many reasons why I have remained silent. With years of silence though, came years of careful introspection. This introspection has led me to find that there is a way to put yourself out there without succumbing to the illness. Being honest and clear about this fight is what will bring awareness, healing and hopefully one day a cure.

I would like to make it clear to any of you reading this that know me though: I will be perfectly healthy again. Even if I do not fully believe it, I will say this until I am blue in the face. This is the only way to achieve a future that is worth living.

Anyone with a mystery illness is yearning to live a full life. This is why I think it is so important to set an example by speaking out and fighting back together. The people who will not and do not understand chronic pain will not go away, but they also will not break us unless we let them. This blog will not be created with a fear of “whining” to those healthy ones who do not understand physical weakness which in turn brings mental weakness, yet circles back and brings mental strength and physical endurance. That is not who this blog is made for anyway, unless of course I can help to make that person better understand. :)

This blog is made for those of you who think you will not be able to make it out of the depths and horrid darkness of a mystery illness. I have a little secret, you can. I made it out. I struggle a few times a month now, okay maybe a few weeks a month, but that is it. This was once a daily hell. The worst nightmare I could have ever imagined. The words I am writing now do not bring the experience justice, but anyone going through it knows the gravity of it all. Here I am now, and you will be here too — back on your feet with a lot of good days, which is all we can ask for.

This blog is also for those of you who want to understand someone with a mystery illness. Perhaps you have a friend or family member who has been sick for a long time. Maybe the ups and downs, mostly downs, are killing your relationship. Please stick around to see that if your loved one is going through anything close to what some of us do, it is not easy to find balance, happiness and control BUT a support system will be one of the greatest fighting chances you can give to them.

Lastly, this blog is for the doctors who do not believe or rather admit that Chronic Lyme Disease exists

For those of you who turn countless patients away, and tell them they are perfectly healthy according to their stellar test results. For those of you that are afraid to admit Chronic Lyme does exist for the fear of losing your licenses. It is time to acknowledge that modern day medicine has not been around all that long. There are diseases out there that you do not yet have the cures for, or answers on how to treat properly. This is OKAY but it is time to set aside the all knowing ignorant attitude. The world is not flat.

All in all, I think there is something to the style of healing and the path I have chosen to take. Through this blog, I hope to inspire and collaborate with others. I will cover what it has been like to be a girl turned to lady who has experienced being in and out of college for 8 years before attaining an undergraduate degree, had ups and down with family and friends, struggled generally with relationships, lived through an uphill medical financial battle, and overall who has pretended to be OK even on the bad days, when her body is 100% screaming on the inside.

Some people have and do see through the act, those are usually the ones with a lot of empathy. Others are generally able to ignore it, (thank goodness for this) and I in turn am able find a way to successfully blend in and strive toward my goals.

What I would really like to share with you though, is that all of the years I have fought, and all of the years I will continue to fight have been and are well worth it. Even on the days when I feel my illness has defined me, and I have accomplished so much less on paper (this is another subject we will cover) than what I am capable of — still worth it.

A lot of us, stay home and try to recover, I have chosen not to do this for various reasons. I am not knocking this style of healing by any means. I only would like to give you a peek into my story and maybe inspire you or a loved one to continue to heal.

Overall this blog is about a person like so many others, who chooses to act until she nearly falls apart — all in an effort to reach something slightly close to the life she would have had without a mystery illness.

Let’s see where this fight takes us…

-Ashley X