MerelyMe stretches me sometimes. This time she asked about the worst MS symptom and how I cope. My answer was a bit lengthy so I'll share it here. Sorry MerelyMe. To read other answers, check here.
Hmm. The worst?
Trouble walking seems to be a big one. I considered that. I resisted for a long time easing into a chair part time -- that is a life-changing move. When I finally got my Amigo scooter, I wondered why I didn’t do that sooner. For years I studied dance, including ballet, and preferred walking to driving, so I don’t say this lightly. It is not fair, it is not easy, it does take a grief process, and I would never wish it for anyone, but not walking is manageable and a wheelchair is better than falling.
I thought about another symptom,Trigeminal neuralgia (TN). TN is a face pain considered by the medical community to be one of the most painful, if not the very most painful, of pains, so it must be close to the top of the list of worst symptoms. But mine usually doesn’t last too long, and it has been dormant for several months now, so I won’t select that one as the worst either.
I think the worst MS symptom is its unpredictability. Many of us experience the unexpected awkward gait, not walking at all, not driving, shooting pains, sudden tiredness or any of the many other symptoms and the social, emotional and psychological problems that come with them. I have found that makes planning with certainty difficult at best. It interferes with socializing and especially individual relationships just we need them most. Relying on someone else for basic, daily, or even for personal needs erodes or shatters a suddenly fragile self image. when it most needs to be strong.
Yes, I think unpredictability is the worst symptom, but it can be managed, too. Learning to deal with and manage unexpected turns whenever they may emerge tends to make us stronger and more flexible for the next unwelcome turn of events. It is a constant struggle with each active symptom being the worst one, replaced by a new one or an old one revisiting. Again, it is unfair and it is not easy. Each new symptom flareup becomes a new accomplishment, building strength with experience. Unpredictable MS requires us to be vigilant, aware of our abilities at any given time, learn to deal with numerous possible problems in our own way. We realize it is not our fault, it is not under our control, we accept that our lives have changed, and we go on with gratitude for what we can do.