Over on MultipleSclerosis.net, we recently shared an article by Dianne Scott about fighting the secondary progressive stage of MS (SPMS). Her words generated a lot of discussion in our community about how MS looks from the outside compared to how it can feel from the inside! The many thoughtful responses added so much to the article and the conversation about life with MS that we decided to compile some of the comments and share them here.
Change in activity level
Many of you shared what a challenge daily tasks have become as your MS has progressed. Showering in particular was a common frustration and energy drain.
“I was a powerhouse once upon a time. Now it takes a whole day just to shower, make the bed, and make something for dinner. If we go out, we don’t leave until after 5 pm because it takes me all day just to get ready.”
“Dressing after a shower is totally uphill. No energy, but so much work.”
“I am invited to a get together this Saturday and just the thought of having to shower, get dressed, and drive myself to the event is so tiring. … I just told them I’ll have to see how I feel.”
“It is easier for me to swim in an Olympic size pool with one arm than to take a shower.”
“Everything takes its toll when I do more than I should…. back to the chair.”
“Some days I don’t get dressed because of the effort it takes. My nest is a green sofa!”
“I told my daughter yesterday that now cold weather was here I could become a hermit until spring.”
“But you look so good!”
Many symptoms of MS are invisible, meaning those around you may not recognize how having a chronic illness truly impacts you. The well-meaning comment of, “But you look so good!” can often miss the mark when it is a struggle to shower and get dressed to leave the house.
“Yes, always fighting on the inside daily. Like people mention, ‘but you look so good.’ I always say thank you (I do appreciate that) and sometimes I comment, ‘well you should see the other person inside – pretty beat up but still fighting like hell.’”
“If we go out, people say, ‘But you look so good!’ I have not walked in over 25 years. I have a 23-year-old grandson who has never seen me walk. Everything hurts.”
“I no longer expect others to recognize when I can’t.”
Fighting from the chair
Much of life is lived from a space of comfort where you can rest. But sitting and resting should never be mistaken for being lazy or passive. So much is happening internally from the chair (or sofa, adjustable bed, recliner …)!
“Finally, someone who is in a chair and gets me! I get so tired of pictures of people with MS walking or going to a gym! I can’t do either! I conduct what I can from my brown chair! … So thanks for telling me I’m OK.”
“Yes…fight the good fight! It’s impossible sometimes!!!! How do we do it? We fight and fight and we become ms Warriors. I don’t capitalize ms anymore! I won’t! I capitalize ME! We are good and WE are brave beyond all there is…. we are the Warriors!”
“I have had some pretty major progression over the last couple of years and I’m trapped in my chair most of the time now. It is so unbelievably frustrating.”
It is always an honor to read your comments where you share so honestly and with such vulnerability the way life with MS impacts you. Please remember, as one of you so poignantly stated: “I am me with limitations.” Each of you is still you.