So often as MS patients, we are left to ponder the question: "Is it just ME?"
We are experiencing a tsunami of sometimes indescribable emotions, physical sensations, cognitive issues, and life-altering choices. These sensations and emotions come and go a billion times per day, along with the accompanying analysis of said sensations. A short summary of some often-asked questions I pose to myself on an almost daily basis:
1. Have I totally lost my mind?
2. Was that emotional outburst just me, or MS?
3. When will my family finally grow completely tired of this BS and leave me?
4. Should I change my disease-modifying medication? I don't think it's working....
5. Did I just feel a new buzzing on my leg?
6. Has my foot numbness gotten worse?
7. Is my vision more blurry than usual today?
8. How many sick hours do I have left at work?
9. Where did I put my.... cell phone? (This one happens about 1000 times per day....insert any object you repeatedly have to search for here....)
10. Why can't I remember that person's name?
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With this constant stream of internal reviews and questions, it is no wonder that many of us are chronically exhausted.
The experience of having multiple sclerosis is the thing I find most personally disruptive, but as a health professional, I also find it interesting from a scientific perspective. After we are diagnosed, we spend hours, days, even weeks studying and reading as much information as we can get our hands on. We begin to understand this disease inside and out, from every possible angle (from a physical point of view.) We understand the immune system, the autoimmune nature of the disease, the lesions of the myelin sheath, the consequences of the damage. We understand the variety of disease modifying medications available, and the medications we can use to combat the accompanying symptoms.
But.....nowhere to we read about how to cope with the experience.
The human experience of carrying this disease burden daily. What about that? This is why making connections with other MS patients is an essential part of treatment. This disease is still considered rare, meaning that the incidence is still only 1 in 1000. 1 in 1000! I guess we all won the lottery, right??? Most of us will never personally know another MS patient. Some will have other patients in their immediate circle of friends and family, but most do not.
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When you begin to feel this burden, and experience the fatigue, the anxiety, the depression, the fear...you must know that it is not you, it is MS.
Many of us question whether our symptoms are actually MS related, or whether we are somehow "making a big deal out of nothing," or "being weak," or "imagining things." You must remember...it is not you, it is MS.
Certain symptoms are easy to blame on MS, such as numbness, vision loss, weakness, and balance issues. Other symptoms are less clear. The emotional and psychological ramifications of the disease cannot be overlooked. Many neurologists and other physicians are quick to say that emotional and psychological symptoms are not caused by MS. Some are still in the dark ages, saying that your pain cannot be caused by MS. The old standard was: "MS does NOT cause pain." I truly hope that providers out there are no longer using this archaic information.
If you are in pain, if you are suffering emotionally, if you are isolating yourself and feeling alone, it is not you, it is MS.
The only thing that helped me when I started to believe that I was alone in my experience with this illness was reaching out. I began to participate in MS chats, group discussions online, and other interactions with patients. MS events such as walks, runs, and other fund raising activities made me feel like I was part of the solution. This was literally a life saver. This was the only thing that made me feel that I was truly not alone. There are thousands of us out there, and social media has made things so easy! With the touch of a few keys, there are friends around the world going though exactly this experience. What an amazing thing, to reach out through your home computer and find a network of people living your experience! When you are drowning under the burden of this disease, reach out.
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What do you think?
Have you been told your emotional or physical pain is not due to MS? That MS does not cause these symptoms?