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Managing the Invisible Side of MS

ms_stories1106How many times have you been approached by well meaning friends, coworkers or loved ones who say things like “you look great” or “I bet you wouldn’t be so tired all the time if you just exercised more”? We all know people do not purposely say these things to insult us. It is however, one of my most personal frustrations.

I have balance issues from time to time, I stumble and I have lost sight to the point I can no longer drive. To look at me though,the average person would not know I have MS. As the saying goes though, I certainly have the MRI’s to prove it!

Unfortunately, the damage that MS has done to me is on the inside. No one can see it, some of my family and close friends realize it but few really empathize how difficult it is to live it.

I no longer have limitless energy. I tire after a couple of hours both physically and mentally. My muscles tire quickly and so does my mind. I have lost much of my short term memory, often repeating the same stories over and over. I lose the same things several times each day, my glasses, my debit card or anything else for that matter. I have difficulty getting the right words out at times. When writing I find myself needing to completely rewrite my sentences because the word I want to use won’t come to my head. Even doing simple math in my head provokes significant anxiety.

What makes this so frustrating is that I once was the manager of a very busy Emergency Department. I have a Bachelor’s degree in Nursing and a Master’s Degree in Business. Things that were once very easy for me are now incredibly difficult. Yet, when people see me I still hear “you look great”. I don’t argue, I do look great!

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

  • SOUNDSIDE
    3 years ago

    I can really relate to this story. I use to run large subsidized apartment complexes and the math and all the income verifications came just as easy to me as drinking water. But it slowly went away and I couldn’t see the computer …would get to work at 9 and be in tears and completely worn out by 10am. It was like my brain had been sucked out of my head. So I came home to see if I could get diagnosed. I was one of the lucky ones in that a lady at church told me to do a form letter and change the Dr’s name and address after each copy and get all my Dr’s notes then go online and apply for my Social Security. Put EVERYTHING that was wrong with me on there and and double check it then when I hit “SEND” take a copy of every Dr’s note to the closest Social Security office and hand deliver it. I sent it the end of June and got the letter the day after Christmas that I had been awarded my Social Security and would get my first check in January for December. They did send me to two of their doctors but it didn’t change anything. They said I would be in a nursing home in 2 years but now I am still driving and walking short distances. Can’t stand for long and have issues but they say I am all attitude. Never give up no matter what they tell you. Be your own best advocate!

  • Miriam
    4 years ago

    I have a similar story. I was diagnosed in August of 2014. Still feels like a new diagnosis for me. I also worked as a RN for almost 30 years. The last 8 or 9 in an ER rising to clinical coordinator. Then it seems my life just crumbled to pieces. I was 49. I can no longer work or drive. I’m having vision issues. I have no short term memory. No energy and seem to hurt all the time.
    My first “real” symptom I guess was trigeminal neuraliga. It first hit me in 2010 and I had a craniotomy but the MS wasn’t diagnosed until 2014. Since then I have had 4 additional less invasive brain surgeries.
    I struggle with depression and this new way of life.

  • LynnC
    6 years ago

    Thanks Penny for the wonderful article. I am only 2 years diagnosed and have been very lucky to date. I can totally relate to the memory isssues. So tired of searching for my debit card after just putting it away 5 minutes before…haha. Helps to hear I am not just “getting old” and “I do the same thing”. Makes a difference to know you aren’t alone and losing it. Thanks again for sharing.

  • Penny author
    6 years ago

    It does help knowing you are never alone. That is why I enjoy sites like these so much!!

  • starsfan8
    6 years ago

    I share the same issues and in fact, though the disability insurance company has accepted that I am disabled and is paying me, I am currently trying to get on social security disability (insurance company is paying for the lawyer as the insurance company will get the back money from Soc. Sec. since they have already been paying me). At any rate, I am dreading going to the judge because though I have the records of not only MS, but scoliosis, and an anxiety disorder, and am seeing doctors for all, I know that I still ‘look so good’. I have moved from a hot climate to a colder one as heat is enemy number one for me. I have and continue to do cognitive training to try and get some of my cognitive activity back but it isn’t really working. It is so frustrating. I tend to worry about people thinking I am lying because they can’t see what is wrong. But in the end, I have realized that what other people think of me is their problem. The ones that live with me know the truth and I guess ultimately that is all that matters. Hurts, though.

  • Penny author
    6 years ago

    I feel like I am reading my own life story. I have been battling with SS since Feb 2012. I have a 12 page document showing “dementia” but was told at the time I filed I would have difficulty due to all of my education~ I have a BSN and a MBA. Too bad I can’t use either anymore. I go in front of a judge in December with a lawyer contracted by my LTD company as well. I am hoping for resolution. I was told by my doc to do cognitive rehab but as yet cannot find anywhere locally to find anyone to do this. So frustrating isn’t it?

  • Tonia
    6 years ago

    I completely agree with your comment. I look the exact same as always, but I now walk with a cane, and I do have some balance issues which make me hesitant to go out by myself. However, like you said, I still look good. I walk slower, and try to keep a smile on my face.

  • Penny author
    6 years ago

    It has been changing my attitude that has kept me sane through the darkest of times. If not for becoming an optimist I don’t know that I would have made it as far as I have. Learning to look at all that is good has changed my life entirely. I have reduced my stress level and in turn have seen the positive effects on my health!

  • Josh
    6 years ago

    I get tired of people ‘asking’ if I have tried this, or that, or something else that ‘will’ work…I appreciate their concern, but at the same time, there are times when I want to yell, “MY DOCTOR IS AN MS SPECIALIST!!! Don’t you think that I just MIGHT have heard all of this before?!?!” But, I simply smile, nod, and make some form of comment on how I will look into it…:D

  • Penny author
    6 years ago

    I completely agree. I get tired of it too. People in general think if we were just more active, didn’t lay around so much yada yada yada. Everyone has an answer yet no clue what our disease does to us inside!

  • Mary Ann
    6 years ago

    I use to hear you don’t look sick all the time when I was working from my boss. The day I fell at work was the turning point. He finally saw what MS does to me and within six months I was let go from my job that I had been doing 16 years, the last two with MS. I get frustrated that I can’t do what I use to as I now walk with a cane or walker. However. Some people I know thought I used it to get attention and I gained wait because I am lazy and font like to exercise. So frustrating.

  • Penny author
    6 years ago

    Yes it is very frustrating and I am so sorry you had that horrible experience. That is why I feel so compelled to get the word our and spread awareness because people are so uneducated about our disease.

    So not be discouraged, keep fighting the fight. You are not lazy, you are who you are and doing the best you can. The only way we can change people’s perception is to raise awareness and that is exactly what I am trying to do!

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