Prioritizing My Health
My name is Stephanie, and I’m a recovering planaholic.
For me, the hardest thing about living with MS is the unpredictability that comes along with it. The inability to know how I am going to be feeling from day-to-day is by far the hardest obstacle for me to overcome. I have a tendency to pile a lot of things on my plate, and I make a lot of commitments that I am obligated to follow through on. No matter what I always keep those commitments, sometimes at the expense of my own health. Being productive, reliable, and ambitious is who I am. It’s the cornerstone of my personality, and without it I’m kind of lost. To tell me to slow down or do less is the same as telling me to stop being me and no matter how well intentioned, it’s just not a piece of advice that I’m ever going to take.
When all I want is to have no plans
I get up every day excited to go to work, and I look forward to walking through the front door in the morning. I’m an upbeat person, I don’t complain, and I try not to stress about things beyond my control. I love my work, I love my friends, I love my family. I love having lots of meetings during the week, and lots of plans over the weekend. But there are weeks that I look at the calendar and go “what was I thinking”?? I’m tired even before I begin, and all I want is to have nowhere to go and no plans to keep.
One week can be different from the next
I’m still struggling with the fact that just because I can do something with ease one week, doesn’t mean that I’ll be able to do it the next. Since I’m still trying to accept that this is part of my MS I do everything I can to hide this from others, which obviously puts extra stress on me. How do I back out without looking like a flake? Should I just go to the party anyway, and leave early if I need to? How do I communicate my needs to the people around me? Of course I have a good reason to need to change plans, and the only person who would view it as being unreliable is me. I’m slowly wrapping my head around that concept.
Hard to admit that we need help
I think this is a frustration that people living with MS and the people around them have in common. Something that was once easy may not be anymore, and it can be hard to admit that we need some slack at work, or to cancel plans with friends. As a loved one it can be hard to know when to step in and intervene, and when to back off and let us try to do it for ourselves. I’ve set the precedent that I am the type of person to always take on a new project, or make plans. Sometimes I get myself in over my own head, and most of the time I’m too proud to admit it. At the same time it would devastate me if I was treated differently or if someone hesitated to involve me in plans or projects because of my MS.
Taking baby steps
I’m trying to take baby steps in the right direction. I know that by the time the work week is over I’ll be exhausted, so I actually schedule “do nothing” time and treat it like any other commitment or work meeting on my calendar. I have an hour long commute that I used to spend making phone calls, but now for two hours a day I sing along with the radio, laugh at stand-up comedy, or listen to interesting podcasts and audiobooks. I don’t answer the phone or respond to texts after 9pm on work nights because I'm tired, and that's ok. I know that it’s up to me to strike a balance, and I’ve started by giving myself permission to enjoy having some down time. I’m starting to understand that mildly inconveniencing someone else is better then jeopardizing my own wellbeing. I’m slowly learning that prioritizing my health is not the same as letting MS take over my life.
Now if you’ll excuse me, I’m late for my next meeting.
How many specialists did you see before finding "The One"?