Loss of Control: A Big Part Of My Life With MS

Loss of Control: A Big Part Of My Life With MS

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. 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?

Why do I feel like I have no 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. 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.

Constant changes

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.

Impact

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. 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

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 begin to look for other small ways of gaining control. For example, I start 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.

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!

Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • India175
    1 year ago

    Hi, it’s strange for me to finally accept that I have ms. A year ago I had done a mri and diagnosed with ms. I still have no clue what involves with this until this week.
    The pain that I indured was like non other. The stiffness, the muscle spasms but yet refused to go to the hospital. I have a very great family and the support me all the way but like me they don’t know much of this illness. Can anybody help me thru these. I want to understand it.
    Thank you

  • Devin Garlit moderator author
    1 year ago

    Thank you India175! There is help out, there are many options for both spasms and for pain that you can try. It very important to discuss those symptoms with you MS specialist.

  • wolfmom21fl
    1 year ago

    OMGoodness. this so much tells my story. i just said to someone last week that accepting my limitations is the absolute hardest thing i have ever had to do in my life! i relate to this entire post… TY so much for helping me feel i am not alone in this struggle

  • deshane69
    1 year ago

    Hi! Thank u so much for always writing the best posts. I look forward to reading them. It is hard to find someone who understands completely how I am feeling, even others with MS. I really, really enjoy your posts. Okay, enough about how great you are
    What I did when I felt out of control was change my look drastically. People stared at me anyway for using a cane or walker. So now I have bright red mohawk. When I first cut my hair, it was 2 yrs ago and it was purple. This haircut made me feel like my old self, badass! Of course there are days when the magic of the hair wears doesn’t work. Usually, a glimpse in a mirror in public or a child pointing at my hair instead of my cane or walker makes me feel pretty badass.

  • cpcatchik
    1 year ago

    Thank you, Devon. I could have written this. It reflects how I feel every day perfectly. Especially since I recently had a relapse and can barely get around the house. I have no desire to go anywhere I’m not familiar with. My husband says I have no sense of adventure. True, I don’t. I need the know if I have to navigate stairs, if there are hand rails, what I may have to dodge, if there is snow to be maneuvered around, etc. I’m terrified of falling or crashing into something. It’s downright depressing, but it’s what I have to work with.

  • Jacksonlowerkeys
    1 year ago

    Devon! Absolutely a great blog post! This should be required reading for new RRMSers. I had RRMS for over 30 years before graduating to SPMS. Once I remember going to sleep happy and waking up wanting to cry. “When you least expected it,….”

    Keep writing

    Thank you.

  • CatDancer
    1 year ago

    This is good stuff. The familiar makes it easier and routines go a long way. But then we always deal with that unknown stuff that pops up in our days. I know fear from this and it’s paralysing and it’s kept me from doing things. One thing I try to tell myself is that there are possibilities; they could swing us into the bad or good. There is one thing that I keep working on: do not let this keep you from exploring and giving yourself that challenge. The turnout could be great or not, but allow yourself to explore. You never know. And disability, it does feel crappy because you worked your butt off and now… but really you have a job everyday, to get up and teach the rest of us confused souls. Many thanks to you.

  • Devin Garlit moderator author
    1 year ago

    Thank you CatDancer! I think being aware of it is often a good first step. It’s important to not let this lack of control feeling grow, which can happen so easily!

  • Poll