What part of MS causes you the most stress?

Remember, it is the disease causing your frustration. Not you.

Recently, my multiple sclerosis symptoms have really been acting up, especially symptoms which affect my mobility. I just do not feel stable or steady on my feet. Needless to say, this is causing me stress.

I think our stress around MS changes as time goes by. When I was first diagnosed, like many people, my first thoughts were about how bad this was going to get and how soon it was going to get bad.

My main stress was about the impact that this would have on my future and how it would impact my dreams for myself.

After living with this disease for awhile, it became clear that I wasn't going to lose all my abilities quickly. I got into the mode of being stressed about how MS was affecting individual days, both in the present and in the future. I would worry that I wouldn't be able to attend a certain event, that I would be too tired to play with my girls or that someone would be offended if I backed out of a lunch date.

Now, I think I feel much less stress over the whole thing. I have found that most people are pretty understanding if you have to cancel plans, as long as you give an explanation. I have also learned that most things can be pushed back and schedules rearranged without too much damage - most urgency was simply created in my head.

I won't say I am completely free of negative feelings about my MS, but I think I have moved from stress to frustration.

The difference for me is subtle, but I feel like stress carries with it the implication that I need to do something differently than I am doing in order to fix the situation, whereas frustration is more like "localized anger" at a symptom or other part of the disease, without implying that I can do anything about it.

Here is what a couple of other people had to say when I asked the question “What part of living with MS causes you the most stress?”:

  • I am my own worst enemy in causing stress, chores are so much harder to do then eight years ago and I am getting very frustrated with myself if things don’t work out as fast or efficient as I want them too. I am working very hard on controlling these feelings, but they do get the better of me many times. Just this morning I was very frustrated that I had a hard time in getting my left shoe on (toes curl under) and getting stressed out made it even a slower process.
  • What causes me the most stress is my husband. I have known I had MS for years and I have known him for almost the same amount of time, but he seems to be in denial when it comes to me having an incurable illness and that causes stress for me pretty much on a daily basis.
  • I find myself getting really stressed when I am expected to go somewhere or do something with someone else. I may have been invited or initiated it myself, but when the day is upon me that is when stress rears its head. MS symptoms really set in and my struggles cause me more stress. In the past, I have pushed through, with much spousal loving assistance, but there was a cost to my personal comfort level, both in reduced mobility and self-esteem.
  • I get stressed when going out in public of if company is expected. Always worried about embarrassing myself even with good friends and fellow MSers. I’m trying to overcome this but easier said than done. 

Bottom Line: I have found it really interesting that in my years of writing for ms.about.com and communicating with readers, very few people have referred specifically to symptoms or disabilities when talking about the stress caused by MS. We all seem to become frustrated or mad with ourselves  or other people in our lives as a result of our MS. 

This applies to me, as well. Since the paresthesia in my leg has been worse, I have caught myself saying things along the lines of "I wish I wasn't like this" or "It really stresses me out that my girls can't rely on me to walk them to school." I think, like most of us, I need to look squarely and objectively at the thing that is really at the core of the problem - my MS - and freely say that I hate my MS. Maybe that will allow me to direct the frustration and stress away from myself. Let's face it, the last thing we need when symptoms are bad is to be hard on ourselves.

Read more about feelings and MS: 

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