Two weeks ago, Amy Gurowitz, who created MSSoftserve.com, invited me for an interview on her show MSLOL-RADIO via BlogTalkRadio. She describes her site as a "fingerprint" because it is unique, much like each person’s individual experience with MS.
Her radio show offers a new story of an MSer each week. This week it was my turn. I talked with Amy about MS symptoms, and how I cope with them. Her purpose was to talk about my coping strategies, especially for certain symptoms.
My symptoms center around walking issues because I don’t walk, have vision problems, incontinence, pain and spasms. Some are always with me, others return at times. The more I read about MS, the more I realize I was having symptoms of MS long before I previously thought.
About two years ago, I essentially lost any function in my right side. I can no longer get myself in and out of bed, and lately I have spent more time in bed than I would like to admit. Over the last several weeks, I have had double and even triple vision.
A list of all my symptoms is very long. When I put it all together for the first time and looked at it, I was shocked. It looked like so much to bear, but it’s not so bad because I never have them all at one time. In fact, there are some symptoms that I have not had at all for a long time.
Best Coping Mechanism
My best coping mechanism is based around a strong positive attitude. I wake up knowing today will be a great day because I want it to be.
I have practiced this for years, through a divorce and through 20 years as a single mother of two young boys. As a manager of computer programmers and other techies, my coping mechanism was similar.
It is basically the same over the years, but with small adjustments for each particular problem. I had a strong support system in my family and grew up thinking everything will be all right.
I think of Pollyanna’s “The Glad Game” where she looked for something to appreciate in every situation. I try to make the most of everything. When there is a new symptom or a symptom becomes more intense, I try to decide how to adapt and what the best course is now.
Usually, I close my eyes and take a few deep breaths. When I am calm, quiet and peaceful, I think about my current situation. I ask myself, “How can I live with that? How can it be improved?” I see active, even vibrant people in wheelchairs. They have been successful and admired in many situations. If they can do it, I can, too.
Coping Through Transitions
Change is stressful for anyone. My first transition was from being healthy to having a chronic condition. When I began to be unsteady, to walk awkwardly, and to fall down, I entered another transition.
Walking with a cane meant my MS was no longer invisible. The cane alerted everyone around me that something is wrong. Adding a cane took away the choice of when I would tell others that I have a chronic disease. Other walking aids, like crutches or walkers, clearly define a chronic disease so it is no longer invisible.
My next change is a really drastic transition. When first diagnosed, almost everyone wonders if they will be in a wheelchair. If the cane or walker is no longer adequate, it is time to consider the dreaded wheelchair. My first wheelchair was actually an Amigo electric scooter. That was almost like a golf cart. It was easy for me to stand up, and it made the transition from cane to wheelchair easier. I used my Amigo scooter for 16 years, before I had to get another wheelchair.
As hard as it is to go from one transition to another — from a healthy life, to a cane, to a wheelchair — the reason for each transition is safety. Essentially, deciding to use a cane is the choice between walking with a cane or falling. Choosing a wheelchair provides even more safety.
Hardest to Take
My osteoporosis and trigeminal neuralgia (TN) are hardest to take. They are distinct conditions on their own but also seem to be symptoms of MS.
Osteoporosis has deteriorated my spine so I can no longer sit straight. TN is extremely painful. I have learned to deal with these situations using medications and by adaption. I usually smile throughout my day and am grateful for what I have.
If you don't like something change it; if you can't change it,
change the way you think about it. ~Mary Engelbreit
Published On: November 08, 2010