The Five Worst Things I Have Done Since Being Diagnosed with MS

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.
 
MISTAKE # 1:  Not immediately making long-term financial plans.
 
I was eight weeks into a brand-new job in 2005 when I was hospitalized with transverse myelitis, which was followed by a diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.
 
Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.
 
Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.
 
After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now.  I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that. 
 
Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for disability, now that my savings are gone and I am in dire financial straits.
 
MISTAKE # 2:  Not immediately looking into more accessible housing.
 
I adore my cozy, 1930s seashore home. It is my dream house. I bought it completely on my own, with no help from anyone, and I have been inordinately proud of it. When we moved in I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.
 
I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.
 
I never anticipated that one day it would take monumental effort to get up the three small steps from the back door to the kitchen. I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.
 
If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now that the market is horrendous, I will be lucky to get any equity out of it at all.
 
MISTAKE # 3: Not having a frank discussion with my children about my illness in the beginning.
 
I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am.  I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.
 
So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared together is so important.
 
MISTAKE # 4: Not taking people up on their offers to help.
 
My amazing friends and my wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do.
 
It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking when they are repeatedly turned away.
 
MISTAKE # 5: Not taking care of myself.
 
I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?
 
No. No, no, no, no and no.
 
I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.
 
That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. Yeah, really helpful coping mechanisms.
 
BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. My denial has cost me dearly. 
 
 
For additional information and resources – including SSDI, accessible housing, talking to you children about MS – call an MS Navigator at 1-800-344-4867 or Ask an MS Navigator at MSconnection.org.
 
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Marie

Marie Cooper

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    10 Comments

  • Beth Ratliff   Jun 2, 2015 11:15 AM
    I thank you for your story, I appreciate your help and thoughtfulness! I've not been diagnosed in ten yrs. They don't want to label me. I hope you're doing better now. Take care, Beth
  • Barbara J.   Jun 2, 2015 7:57 PM
    Thank you for your story, you really opened my eyes, it is not easy for me to ask for help, because I was always running around. But now I am slowly
    learning what I an do and cannot. Thanks again.
  • Deb Britler   Jun 6, 2015 10:36 AM
    I have M.S. Since march14 2000, I'M 56 Years old. I have ms pretty bad, my eye's my legs, & arms. I'TS all different things going on with my body very confusing.
  • Melissa   Jun 11, 2015 11:35 AM
    Thank you for sharing this. Especially the part about sitting down with your family. Unfortunately, I lost my father to MS in 2006 (although I blame an experimental treatment for his death). It was hard growing up with a sick father, we knew he had MS, but we never really talked about it. He ended up being laid off for his illness and fought long and hard to go on disability. He, like you mentioned was not really proactive in the beginning. He hid in his dark room and had seemed to give up on a life instead of trying to build himself up. He did however try any treatment available, but I think you need a proper headspace too. I feel deeply connected to the MS community because MS was so much a part of my adolescence and early adulthood. The pain and frustatation and wanting to help, wanting to take the pain away still resonates with me now, ten years later. I miss him so much, but he had the worst kind of MS. It was chronic progressive and relentless. The final years of his life he was stuck in bed, muscles completely contracted and suffering. He was in such pain he often spoke of jack cavorkian and how much he supported his work! This was hard to hear as a daughter, that your father wanted to take his own life. I will never be able to feel what he felt, but I am so grateful for the time we had and the deeper understanding of this illness and what it does to the sufferer and the family. My thoughts and prayer are with you.
  • jamese   Jun 15, 2015 7:47 PM
    I am a 37 year old female and i suffer from many symptoms from my MS. Mostly fatigue, depression, mucle aches and weakness. I feel as if no one understands how hard everything is for me since i suffer more in my hands and arms. I have problems with simple tasks like brushing my teeth because i feel like i have to hold my arm up to long. U don't realize how much u use ur hands until u don't have 100% ( i dont even know if i have 50% use). I keep being told I'm too young for disability but idk what else to do.
  • Jean Cassin   Jul 15, 2015 6:53 PM
    I so can relate. I can no longer do stairs either and just left my house and move into an apartment. I love my house and try to sell it no one would buy it. Don't know what I'm gonna do. Can not afford my mortgage and rent. I'm on social security disability and it's not enough to live on and I just turn 50. I never thought I would not be able to work 10 more years!!! God I hate MS!!
  • Sue Schroder   Jul 15, 2015 9:47 PM
    I can't say I was in denial as much as I was still trying to function normally since people seemed to expect me to.
    I looked okay, so I was tired a lot, who wasn't?
    People, even my spouse, just didn't seem to understand. He worried that I would lose my job if I kept calling in sick, and at work people began to treat me like a malcontent and slacker.
    Having my younger brother die suddenly just after I was diagnosed really sent me over the edge. Within the year I decided I needed to leave my job and move to a less stressful place. My husband was shocked, but came to support me after some long talks. I also stopped taking the Avonex, Ambien, and various antidepressants, since I only felt worse.
    It's been good to take charge, tell others "no", and try to get on with my life.
    But I still have trouble asking for help.
  • Corinna   Jul 16, 2015 10:03 AM
    Me, me, me! I still know most of my family including my adult son have no clue! I bought a house all on one level and though it is small I can not keep up with the work. I'm terrible at asking and accepting help. I don't take proper care of myself either. I'm mad as hell my life has become so different! I still struggle to go to work. I've developed a deep overwhelming depression which on occasion causes me to lock myself away from any life. I'm struggling to manage better but financial issues really pack the load on my shoulders. It's become a giant snowball! I'm at a loss many a time.
  • Eileen Allen   Jul 19, 2015 4:55 PM
    What a marvellous piece. So sensible and down to earth, to admit mistakes
    Is difficult but to reach out to forewarn others is brave and humane .
    Best Wishes Marie.
  • Michelle   Apr 29, 2016 3:24 PM
    I lost my husband, my house and everything I own