Multiple Sclerosis and Its Challenges. S.W. Hussey. Knowledge is Power! Educate the Masses! June 2002.
I have recently reviewed an excellent website on understanding and realizing the frustrating and (seemingly) invisible symptoms in multiple sclerosis. Please take the time to access this site: www.invisibledisabilities.org.
In order to create a better understanding of debilitating illness, IDA provides informative articles, booklets, helpful links, a message board and much more! Sometimes the debilitation of MS is not so obvious from the outside. Even when we are using a wheelchair or cane, loved ones do not always understand the disabling pain, dizziness, fatigue and cognitive difficulties that may be present.
IDA addresses those “invisible” symptoms to help others understand; even when we “look good” we may not “feel” good. Do your loved ones have a difficult time understanding your illness, because to them you “look good?” IDA’s publications help friends and family understand the pain and fatigue we face on the inside, even though it is not so obvious on the outside.
While you hope folks will understand when your fatigue renders you hopelessly tired, you often realize they truly don’t understand. Friends, who know you have MS, but have trouble believing that your symptoms are real, have approached me with a smattering of disbelief at how I can be active one minute and then almost comatose the next.
Unfortunately, it is human nature to ignore the invisible symptoms of MS, Mental Illnesses and even Cancer because the disability is INVISIBLE and not outwardly visible. Still, when facing the challenges associated with multiple sclerosis, don’t forget to have a positive attitude. Enjoy those days when the fatigue, vision, mobility and bladder/bowel functions aren’t causing you to remain homebound.
Enjoy the good days to the fullest. When you are experiencing days filled with constant frustration such as numbness, tingling, unexplained pain, remember those days that are now good memories.
On one of those LUCKY days, when you are feeling good, get out and shop, sight-see or even go to the zoo. Take advantage of the wheelchairs, even if your mobility isn’t challenged. You can avoid the displeasure of ending your trip too soon because fatigue has hit you. Make these outings count for you. It is a REAL mood booster.
My husband, an avid outdoorsman, wants to climb the 4000-foot mountain outside our home. I would love to take on a challenge such as this, but I am realistic enough to know it’s neither safe nor manageable, given my mobility issues. Instead, I offer to stay on the ground and take pictures around Mt. Si and arm myself (and him) with cell phones, so we can communicate.
Take time to visit Wayne Connell’s IDA website: www.invisibledisabilities.org. There are links, comments, a place where you can compare notes with other MS patients. Take time to educate yourself in ways to overcome the ‘homebound status’. This adaptability is key in the management of your MS.
Until there is a cure, smile as much as you can…Don’t give in, challenge yourself (within reason) and remember –There IS light at the end of the MS tunnel!