Apparently, I was just informed that my family talks about how I'm not the most pleasant person behind my back. My grandparents and my aunt, who act so happy to see me in person and give me love, call up my mother and complain about me.
Within two years, I've gone from walking to now falling frequently, in a scooter, reliant on a wheelchair, and paralyzed on my right side because of a lesion in my spinal cord. I'm 35 and I'm becoming more disabled every day.
I've been diagnosed with PPMS. From the sec my feet touch the floor each morning, I'm reminded of my MS. I fell on Christmas day and hit my head against the wall. My mother told me today, that when it comes to me needing more assistance, she does not want me living with her and her husband, but that I need to think about assisted living/nursing home living arrangements.
I can't explain how alone I feel, knowing my family acts one way around me, but really feels something else. MS has been real hard on me and I'm doing the best I can.
They just don't understand when I say I don't feel well or I'm tired. They respond with, "I'm tired too." I'm scared because my body is just getting worse every day. I can't walk, can't use my right arm/hand/fingers, choke when I swallow, falling much more frequently and I'm unable to get up.
I'm sorry I'm not my happy, normal self, but inside, emotionally, I'm hurting. I pray to God that He keeps me strong enough to not throw the towel in. I'm afraid to reach out to friends because, for all I know, they probably feel the same way as my family, putting on a front.
I just needed some encouraging words from those of you who understand. I feel all alone.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Within two years, I've gone from walking to now falling frequently, in a scooter, reliant on a wheelchair, and paralyzed on my right side because of a lesion in my spinal cord. I'm 35 and I'm becoming more disabled every day.
I've been diagnosed with PPMS. From the sec my feet touch the floor each morning, I'm reminded of my MS. I fell on Christmas day and hit my head against the wall. My mother told me today, that when it comes to me needing more assistance, she does not want me living with her and her husband, but that I need to think about assisted living/nursing home living arrangements.
I can't explain how alone I feel, knowing my family acts one way around me, but really feels something else. MS has been real hard on me and I'm doing the best I can.
They just don't understand when I say I don't feel well or I'm tired. They respond with, "I'm tired too." I'm scared because my body is just getting worse every day. I can't walk, can't use my right arm/hand/fingers, choke when I swallow, falling much more frequently and I'm unable to get up.
I'm sorry I'm not my happy, normal self, but inside, emotionally, I'm hurting. I pray to God that He keeps me strong enough to not throw the towel in. I'm afraid to reach out to friends because, for all I know, they probably feel the same way as my family, putting on a front.
I just needed some encouraging words from those of you who understand. I feel all alone.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Comment