Are You Getting Worse?

By Janus Galante

2 min read

This question hit me hard, because I didn't want to think about it. After all, where I live, there is still snow on the ground so naturally, I have been mostly inactive, inside all winter long and here it is the last of April, so naturally any exercise will seem like an extra exertion, right?

A gentle incline that felt like Mt. Everest

So I started taking walks down to the campground not far from where we live. An "easy" walk for me on the way down. Trouble is, it's uphill most of the way back. Not awful, just a gentle incline that feels like scaling Mt. Everest.
When I didn't make it back home within a reasonable amount of time, my husband drove down to the campground to pick me up. I was SO glad to see him and grateful to get off my legs! Truth be told I was done for, for the rest of the day. Eyes feeling like they were in a pinball machine, legs so weak I could hardly stand, along with a host of other things going on.

"Do you feel like you're getting worse?"

When I finally got settled down a bit I noticed him looking earnestly at me, and then... "I want you to be honest with me, do you feel like you're getting worse?" We both broke out in tears and when I managed to I squeaked out a "no." We broke out in what seemed a ridiculous, pressure-relieving laughter, and I could almost hear him thinking LIAR! He knows I am hugely goal-oriented, and very driven in certain areas. So we managed negotiations for now. No more walking down to the campground. Instead, I drive. (It's only 1/2 mile) that way, I have my "safe place" if I should need it, my car.

It makes my sweetie feel better and I SURE feel better! As for that question, well...guess we'll find out....!

Your life matters

I want everyone who reads this to know that you are greatly loved, thought about, and no matter what happens, your life matters! M.S. can be so unpredictable, scary, and painful, physically and emotionally, and even though we all experience it to different degrees, we all experience it together.

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toledo34287 Member
Am I getting worse? Yes, but like you I try to ignore it. It’s those tiny little things we wouldn’t even notice if we didn’t have MS. Like if I need to turn around do I go left or right, I tend to go right because my balance seems more secure. Just a minuscule thing even I hadn’t noticed. Silly MS.
1. lupe Member
 OMG I go through the same thing! My boyfriend asked me why I turned all the way around to get up off my exercise mat on the floor when I could have.... After explaining to him that that's the only way I could get up, he understood and doesn't question it anymore but originally, he did find it odd. Glad to see it's not just me!
2. Janus Galante Moderator
 <inline-mention username="lupe" user-id="3991098"/> it's NOT just you. Not by a long shot! My husband and I still laugh about something he said a couple years ago. (Which was not funny then!) When he pointed out something he wanted me to look at, and saw I was having difficulty turning, he said "just pivot." Oh, okay, from now on I will remember "all I need to do" is pivot! He hasn't made that recommendation since! Lots of hugs...Janus
michclaud Member
Kathy, I was diagnosed in 2013 at the age of 60. I have had pain for many years so being diagnosed with PPMS it really gave me some relief! Sounds crazy , huh! I have had RA since I was 5 years old when it was diagnosed by my then pediatrician, so I call my chronic disease RAMS. The RA pain kind of blocked out my mind questioning the nerve pain I was experiencing. My ophthalmologist was the one who sent me for my first MRI because of a problem with my eyes. That started my launch of many doctor visits which I hadn’t done in 34 years because of a lack of trust in doctors. I now have a wonderful neurologist and team at a MS clinic in CT. I found lately that my symptoms seem to be getting worse even though I am still taking all the meds correctly. Very frustrating to me,but for a while I had plateaued to a degree.
1. Janus Galante Moderator
 No, it doesn't sound crazy at all michclaud! My heart just goes out to you for not only having the r. a. since 5, which is WAY too young, but then the diagnosis of the m.s. later in life. It's a relief to hear that finally, you have a neurologist and team it sounds as though you can work with. Have they given you any thoughts on why the symptoms seem to be getting worse? I don't know if you've ever seen one of our other platforms that's offered: <a href='https://rheumatoidarthritis.net/' target='_blank' rel='noopener noreferrer ugc'>https://rheumatoidarthritis.net/</a> but it might be worth looking at, if you haven't already seen it. Is there anything that helps you with the pain? (I sure hope so!) Thanks for your reply to the story...Janus
rodger Member
That's quiet right as I have found out I am a Devoted Lover and still love my wife even though she put me in a hospital place as she couldn't look after me. Also she doesn't like the way I have gone.
f5hwo4 Member
Living is assisted living might not be as bad as you think. My husband takes pretty good care of me but does blow up in anger now and then. He also belittles me for little things, I know he is frustrated. I just wonder how much I can take and how much worse it will get. His mother did the same thing when his father had a brain tumor, I was hoping my husband wouldn't be like that. Your wife may have gotten to the point where she couldn't handle it but didn't want to hurt you. Potter
1. Erin Rush Community Admin
 <inline-mention username="f5hwo4" user-id="3977349"/> (Potter), I am so sorry your husband loses his temper with you. That's not good. I know caregiving can put an unbelievable strain on a relationship, but it's not your fault that you have MS. I know some of our community members have found assisted living to actually be a good thing. They get more consistent care and interaction with other people. Gentle Hugs, Erin, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member.

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