Have you met Alys yet? Some of you may know her on PatientsLikeMe as browneyedgirl3. Alys was diagnosed with multiple sclerosis (MS) back in 1987 and has been sharing her own personal health journey on PatientsLikeMe since 2009. She recently took some time to talk to us about her diagnosis, staying optimistic and what inspired her to write a book.
Can you tell us a little about your experience with MS? What your first symptoms were and when you were diagnosed?
I didn’t give MS much thought until I was forced to examine the disease on a personal level. I began having symptoms at age 16. I initially had sensory symptoms like numbness, pain, burning, vertigo and fatigue. The headaches were unpredictable but I would just excuse them as typical teenage stresses. The blurry vision was a bother as well. I was diagnosed November 18, 1987 while working as a registered nurse (RN). I was 21 years old. I was the charge nurse that night so I was busy and exhausted. Suddenly, I was discovering what many people with MS are dealing with on a daily basis and I didn’t like it! I began to encounter symptoms at an age younger than most. Now, MRIs were being used to diagnose MS, so the diagnosis was made quicker than when I was 16.
In your PatientsLikeMe bio you talk about staying optimistic and keeping your smile on. What are some of the ways you do that?
I manage to do my best to be optimistic, as I have learned by my own experience with this illness, that the positive behavior has given me much better results than negative. I have learned how negative energy is wasted energy-counterproductive, and I don’t have energy to waste! By being an example of how effective a smile and positive behavior can be, I get satisfaction knowing I gave someone hope that this is not all there is to life, just an inconvenience, but it’s up to the individual how they choose to deal with it. We are more in control of our life choices than we give ourselves credit for. I believe that is an awesome revelation!
I understand you’ve written a book; It’s All About Attitude. Can you tell us a little about it and what inspired you to write a book?
I have been keeping a journal since the year prior to diagnosis. It was given to me as a Christmas gift from my older sister but I managed to write in it often as I grew up. I would bring my journal with me each time I was hospitalized to describe my symptoms, feelings, how the MS was affecting me THIS time as I try to live just like everyone else was living their lives. I had to keep on altering my life to accommodate the unwelcomed guest – MS. The nurses on the floor would send other patients with MS to my room because I was a nurse with MS. As I would meet many others with MS, they would see my journal and I would show them how I was documenting my experiences. They would encourage me to write a book but I would just tell them no, this is just for me. Then, as I had more challenges with chronic illnesses, I thought, this is more than I was prepared for. Currently I am married, that’s right; he married me knowing I have MS. We have a son to raise and I am determined to teach him what I have learned during my life as I am continually battling chronic illnesses along with the same challenges most people encounter. I must teach him what I have learned about life and how it might not go as planned, but no matter what you encounter, whatever choices you are able to control, make wise decisions since you are the one who has to live with it.
As an RN, are there any unique insights you’ve discovered about MS over the years?
As an RN I have learned how I am in control of what meds I take or what treatments I allow to be done to me. I have also learned empathy for others. I have also come to the realization that just because someone is a doctor, I should not hesitate to question prescriptions or treatments for me. The doctor IS working for me?! Also, physical therapy is so important. I must move this body to remind it how! I don’t want to become a professional wheelchair sitter! I have learned how well I have learned to sit because I’m sitting here typing instead of exercising!
If there were one thing you’d want every MS patient to know, what would that be?
I would have to say that the ultimate lesson I have learned that I would want other MS patients to know is what I tell others: It really is important to face an MS diagnosis with a positive attitude. It’s up to you. See? Something you can control!