Facing My Fear of Aging with MS
Two times during the last six months I was bedridden. It was not from multiple sclerosis which is what could be expected. I injured my left foot both times. I could not put any pressure on it at all. None. Both times I was rendered helpless and practically trapped in my bed. Not trapped in my bedroom, but trapped in my bed.
I was blessed and lucky and every other positive thing that my mom was available to help me. From bringing me crutches and a walker to making sure I was fed, my mom was the angel who hovered over me. She took care of me as an adult in the same way she did when I was a child. I don't know what I could have done for myself. I shudder to think about how sideways everything would have gone without her.
Aging with MS: Facing my truth
These episodes brought up uncomfortable truths for me. I am getting older and living with multiple sclerosis. I do not have a care system in line. I do not have close family members or children who could help with my care in my older years. I do not have people close to me who would check in on me and provide assistance. I see other people living with MS who have a structure around them. They know that they will have people who will be by their side as they grow older. Someone who can step in and see to their best interests. Of course, I cannot know the particulars of every situation. However, I do know that not having any backup is not on their minds. I could wind up being that woman who dies alone and is found days or weeks later.
Thinking about my care options
Living with this knowledge has made the sheer act of looking to the future something of a folly. I project myself into my life 10 or 20 years from now and I hope we begin to value caretakers. I am looking at inpatient and outpatient commercials in a whole different way. Cheerful, friendly people are shown giving care to the elderly. I watch the ads and wonder about myself. What will Social Security cover in the future? Will I get the patient made to lie in waste for hours? Will I be financially or physically abused when I am ill and unable to fend for myself? I watch TV and I see unvarnished truths about how little we seem to value those who are not contributing to society through work or money. As a woman disabled with multiple sclerosis I worry incessantly about my future. The more I look at it, the bleaker it can be.
Multiple sclerosis has affected me physically in ways I did not expect. I am sure that this will continue for the rest of my life. When I injured my feet and had fears of not being able to reach the bathroom, I had moments of sheer panic. I was not prepared for this to happen. I thought I was ready for a possible decline in my mobility and health. It is like a cloud overhead that can part and show sun or it could just hang there dropping a deluge.
This fear is a part of my daily life and getting older adds to it. I am taking the time to put a caretaker plan in place for my future. It is the only practical and responsible thing to do. It lessens some of my concerns. It cannot completely erase my fears. MS is not a disease for the weak or controlling or for those in denial. I am aging. I am aging with MS. Facing this fact might help me to not continue to live in fear.
Were you misdiagnosed with something else before receiving a MS diagnosis?