Loss of Control: A Big Part of My Life With MS
Last updated: May 2022
When we discuss the effects that a disease like multiple sclerosis has on people, we often focus on the direct symptoms it can cause: the pain, fatigue, spasticity, trouble walking, cognitive dysfunction, mood swings, depression, etc. MS has the ability to cause a long list of issues. They are not, however, all direct results of the disease.
MS symptoms can snowball into something bigger
The many symptoms can snowball into an avalanche and cause some profound problems in our lives. One of these issues that I often struggle with is a feeling that I’ve lost control of my life. While not a physical symptom of the disease, this is no doubt one of the toughest things that I deal with as a result of having MS.
Why do I feel like I'm losing control?
Like many of the issues I have living with my disease, being on disability certainly carries part of the blame. Not being able to work makes me more dependent on a system that seems less and less like a sure thing these days. It makes me feel trapped, like I can’t control my own destiny.
I wasn't expecting to be unable to work
When it comes to being on disability, nothing about it was my choice. It was unplanned and happened quickly (the not working part, that is - getting on disability is far from a fast process). There are many other specific reasons and situations, but like what happened to me with disability, many other problems have popped up seemingly out of nowhere, and it’s that pattern that really has an effect on me.
Exacerbations can come on suddenly
That’s the nature of having MS; things can pop up suddenly. Myelin can be eaten away slowly, then suddenly, that damage makes its presence known. Nearly every exacerbation I’ve had has seemed to come on suddenly. I was fine until I wasn’t. Even my first symptoms - I went to bed and woke up unable to stand. It all happened so quickly.
The same with triggers; there are many days when I have something planned, then something happens, and I’m no longer able to do it. I constantly have to cancel at the last minute, sometimes with others, and always with myself. That pattern of life suddenly changing really characterizes MS to me. How can you ever feel in control of your life when it can change so suddenly? When it has changed so suddenly, so many times. Everyone has the possibility of something in their life going unexpectedly wrong. However, multiple sclerosis has made that happen to me on more occasions than I can count.
I am used to being disappointed
The constant and swift changes of my body leave me feeling consistently inconsistent. It can be hard for me to get excited about things because I’m so used to being disappointed. More and more, I find myself always planning and even expecting the worst because I feel like that’s what often happens to me. I end up feeling like I’m someone who will refuse to take off their life vest the entire time they are on a cruise ship. I think I’ve developed this way of planning to be disappointed as a way of dealing with this lack of control.
I have to plan for the worst
It’s not a pleasant way to live, but it’s better than the alternative. If I don’t plan for the worst, I can be overcome with anxiety, feeling like I’m free-falling in a sky of panic. That kind of uneasiness and stress can lead to worsening symptoms.
Finding control in other ways
While planning for the worst is a not-so-great way of gaining a little control over my life, it’s far from an ideal solution. I began to look for other small ways of gaining control. For example, I started to become a bit more reliant on routines and familiar places. I tend to favor going to the same places over and over again, because it’s a source of control for me. I know where things are (which can help if something, like say, a bathroom emergency happens), but the more I frequent a place, the more positive experiences I have there.
Having things that help reinforce the positive moments for me really helps me feel in control and at ease. Having a positive history with a place, event, or thing goes a long way to helping me feel in control. Along the same lines, starting my day with the same routine does a lot to help me have a good day.
How you do take back some control in your life?
I am always looking for ways to feel more in control of my life. It’s always going to be at least a little difficult to feel at ease and in control while living with such an unpredictable disease. That doesn’t mean I can’t and haven’t made improvements though. I’ve come a long way over the years and I will no doubt keep improving. This is certainly a topic that I will touch on again in the future. I’d love to hear how some other folks deal with this as well!
Thanks for reading!
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