I am still running on empty this week. It is very strange, I walked the furthest I walked on Monday. Wednesday and Thursday I’ve had difficulty standing up and transferring. When I say difficulty, I mean it’s been harder than it’s had been over the previous weeks. It is requiring more energy to get myself up into the standing position. It is more laborious moving my feet. Good MS days and bad days. I have had some pretty intense workouts in the morning. I am still trying to do more in my wheelchair. It is certainly harder. Yet, some of my standing up is before I have exercised. I wish multiple sclerosis could be more consistent. It is hard enough to deal with everything. The physical symptoms you fight every day are exhausting. Not many talk about the mental side of living like this.
I hate when someone says to me, “the more you walk, the easier it will get”. They love to ask every time I have an infusion, “will you feel better after that?” I know people don’t understand how MS works, I get that. I don’t think people get the fact that the realization that practice doesn’t make your symptoms better or medication doesn’t help is like a complete mental mind f@ck for us. It is so hard to wake up each day and never really know what to expect. Not from the day but from your body. What worked perfectly for the last week, month or even years may all of a sudden shift without any notice. There are no warning signs that things are going to be bad. It isn’t because it’s about to rain and your joints act up. Other than knowing about heat or cold sensitivity we have no idea when a bad day is coming. Even the heat or cold doesn’t have a specific rhyme or reason. We could have a heat wave and I can be fine but two weeks later, I’m dragging my feet and it’s 85 degrees. It is a different set of difficulties almost daily. The symptoms may be the same but how they affect you can drastically change day in and day out.
All the uncertainty takes a toll on your mental health. It isn’t just about being physically strong to deal with a chronic illness. You need tremendous strength mentally. It is that strength that gets you up each day, through each day and prepared to face the next. So to everyone out there who is fighting daily, stop for one second and praise your strength. You are so strong. Believe in you.