Multiple sclerosis, Struggles

The new normal

MS is so intrusive. It came over without an invitation, plunked itself down on my couch and decided its stay would be an extended one.

In my overtures, I have made it clear it is not a welcome guest. I guess you could say we are in a battle of attrition – I really want my couch (and my life) back.

I admire all of those with this disease who can confidently say “I have MS, but it doesn’t have me.”

Nice sentiment, but I won’t get it stitched on a pillow anytime soon. Because right now, MS does have me in its steely clutches.

It dominates my life in the most unhealthy of ways. There are, of course, the physical difficulties: Fatigue, the arm thing that is the torso thing and sometimes the leg thing, the shot thing. I can’t take long hot showers anymore because it could lead to a pseudo-exacerbation. So there goes one stress reliever. I can’t do the exercise I want right now. I can’t push myself like I’m used to.

On an emotional level, it has pulled no punches, either. Every day I still feel numbness in some part of my body is another day I lose hope.

I cry. Oh, man, do I cry. And get bitter and angry and want to shout and slam doors and then cry some more.

And then there’s the whole living my life thing. I make decisions large and small with MS as one of the main determining factors.

I’ve had to say no again and again and again to friends because I haven’t felt up to much of anything. I’ve had to cut back on things I don’t want to cut back on.

These past couple of weeks have been tough because I’ve thrown myself into my job. Which means other tasks such as general upkeep of self and house and basic communication have been neglected.

The holiday season is a big deal for many people. But now, with MS taking up residence in my body and brain, it’s difficult to want to put out a big spread or travel or decorate a tree or even shop.

I keep waiting for normalcy to return. For things to be as they were, because I’m tired of failing at this new balancing act.

But this houseguest, MS, has other ideas.

I guess we need to learn to co-exist. But I’m still taking back my couch.

8 thoughts on “The new normal”

  1. I know it is mindbendingly tough. I am here to support you and help however I can! Just say the word. Or make Nick do it 🙂

  2. Jennifer, I hurt for your struggles and pray for you every day. When I was diagnosed with diabetes I struggled with denial and anger and frustration and it’s hard to think of a disease that controls so much of what you do. Not that I have a similar condition. I appreciate your honesty with your feelings and think that’s probably a great start to coping. I admire your strength and wish you the best!

    1. Thanks, Alison. Writing has helped me cope. And I’m relieved to know that my anger/frustration/denial isn’t me overreacting but an actual part of the process of accepting this new life.

  3. I can totally relate! Ugh! Sometimes you just want it to go away and never come back but we know that can’t happen (at least for now). I’ve had to slow down and give up doing things I want to do as well and it is frustrating but the more rest I get the better I feel.

    1. Yeah, I’m slowly figuring out that I need to set aside more time to just take it easy…so lazy Sunday it is (except for the grocery shopping and laundry and cooking and cleaning….ha!)

  4. I know what you mean. The amount of daily activites one can handle just goes down. I also have to let myself sleep in or else the whole day is shot. My mom is coming for a visit in a week and got these early flights. The thought of getting up early and then having to drive to the airport fills me with dread, for those moments and the rest of the day after that.

    Now I have to find a way of telling her morning things are really not good for me without hurting her feelings.

  5. Have I mentioned lately that you really are my hero? HUGS!! And Matt and I are here for whatever you and Nick need — even if it is just a little Potter time. 🙂

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