Living with multiple sclerosis (MS) takes a huge toll on the body. One of the greatest challenges is mobility changes. Those living with MS often find their activity level changes. Things that once came easily, such as walking, cooking, gardening, and shopping, become difficult.
MultipleSclerosis.net published an article about coping with changes in mobility. Many community members responded by sharing their experiences. Here are some of their insights.
Losing activities that brought joy
The continual decline is a challenging aspect of MS. As time goes on, symptoms progress. Those with MS find more things they can no longer do with ease. Basic chores, gardening, and working all take more energy. Ultimately, many respondents give up things they love. Their bodies can no longer manage those activities with the limitations of MS.
“I just had the realization yesterday of yet again something I can no longer do, like prune my garden. I sat on the lower portion of the retaining wall and could not get up. Another year, another thing I now have to give up.”
“Last autumn, I wanted to turn upright some flower pots that had fallen over. It had rained during the day, so the grass was wet, but I thought if I go slowly, I won’t fall. No such luck. I slid on the grass and turned my ankle. I couldn’t get up, so I had to drag myself up a small incline to the patio.”
“I had to give up working, which I hated, but I don’t have to work through the fatigue, which was a huge issue for me.”
Struggling to walk
MS often affects the legs. Over time, those with MS find it more and more difficult to walk. Getting around the home is challenging. Going out takes a lot of time and effort when mobility is slow. MS can require the use of mobility assistance devices. Several respondents shared how MS impacts their ability to walk.
“I’ve had it since 2006 and am definitely starting to decline. Going on walks used to be relaxing, but now they are even challenging.”
“When I could no longer walk or only use one side of my body, I was mad at myself, thinking I should be stronger. But I kept trying – nothing worked.”
Wrong brain signals
Living with MS often feels like wires get crossed in the brain. Respondents shared how they intend to complete a particular action and find themselves doing something completely different. The signals between the brain and the rest of the body break down.
“I’m over here just trying to deal with my body and how I feel. My hands are so bad that my brain sends the wrong messages like, oh, that pot is hot, but then my hand goes and grabs the handle. I’m a walking accident and am afraid of the future and deteriorating!”
“All the wrong messages from the brain. So hard, life is so hard now.”
Celebrating one’s abilities
A few respondents have not experienced a dramatic decline in mobility yet. MS affects each body differently. These respondents shared the ways they prioritize staying active for as long as possible.
“I guess I am one of the luckier ones with no real loss of mobility or movement, just slower and more careful with the balance and muscle strain that occurs.”
“I walk several miles a day and exercise daily. Many people think I’m nuts for doing that, but I know it could all be gone tomorrow, and I want to keep going as long as I can.”
