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The Five Biggest Mistakes I Have Made Since Learning I Had MS
Contributor
Written by
Marie Cooper
July 2011
Contributor
Written by
Marie Cooper
July 2011

I am a relatively smart person, but I have made some pretty dumb mistakes in my life. A lot of the dumbest of the mistakes came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

 

MISTAKE # 1Not 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 would subsequently lead to my 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.

 

But because my benefits hadn’t kicked in yet, and because I was in complete denial (more about that later), I went back to work way too soon and focused on keeping my job instead of maintaining my health. For almost two years I worked like a dog, twelve hour days, on call 24/7, determined to prove I was going to be the best director in the system despite having MS. And I was. Unfortunately, that did not stop them from eliminating my position the week after I applied for intermittent Family Leave for my MS treatments.

 

So did I pursue disability then? No, of course not. I found another job within a month, this time commuting into New York City. Ramp up the stress factor! They also eliminated my position within a week of my asking for an accommodation.

 

So, now I checked into disability, right? No, of course not. I got another job, still pretending I was going to work until retirement, just like I had always planned. After almost two years in that job, their mismanagement caused a huge layoff. Unemployed again. Only now I couldn’t ‘pass’ anymore. Now I needed assistive devices, cane or a walker, to get around. Huge red flag for hiring managers, though of course there is almost no way to prove that.

 

After a year and a half I am still out of work and, realistically, unlikely to ever return to the work force. My condition has significantly deteriorated and I cannot walk any distance unassisted. I am finally looking into 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 little Craftsman cottage. 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 my girls were still in grammar school. I pulled up ratty carpet, painted every room in marvelous colors, pulled down vertical blinds to let in the sun, spackled, planted, repaired, you name it. It is a lovely, sunny, charming place that people settle into and are reluctant to leave, it is so comfy.

 

It's looks are deceiving.  For a cottage, it is pretty packed, four bedrooms, three baths, sunroom, living room, dining room, kitchen, full basement, patio, side yard, front yard, separate garage. I could blow through the house in an hour cleaning it. 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 herculean effort to get up the three stairs from the back door to the kitchen, which is the only way into the house from the back.  There are even more steps in the front.

 

Except for those three, which I have to slowly, painfully drag my feet up one step at a time, 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 the market is horrendous, I will be lucky to get any equity out of it at all.


MISTAKE # 3: Not having an honest discussion with my children about my illness in the beginning.

 

 I have four children who were ages 18, 20, 28 and 29 when I first got sick. They are good people with good hearts and I know they love me. But 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. What I’ve done is caused even more pain.

 

My oldest son at the time very gallantly told me if there ever came a time I needed a place to live, he and his then girlfriend, now wife, would have a place for me. But I couldn’t help noticing when they bought their first house, there was no bedroom on the first floor. And what’s worse is, he has pulled away from me and now no longer even speaks to me. And I don’t know why.

 

My second son will do anything I ask him, fetch things in his pickup, bring over my grandson for visits, anything but talk about how sick I am. On the off occasion something comes up that is unavoidable he says, with genuine feeling, “I’m so sorry Mom”. But any other conversation is taboo.

 

My youngest, whenever she is confronted with the reality of my illness also says “Oh Mommy, I am so sorry.” But otherwise will not talk about it.

 

My third child, my oldest daughter, lives with me, with her family. She has become my caretaker. She does the wash I can no longer do, she does the cleaning, I do some of the cooking, but she really manages the house. She works full time and has a five month old baby. She sees my steady deterioration but we don’t discuss it. She is getting burned out.

 

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 sister have stood by me for decades, through horrible losses like my husband’s death, through joys like new jobs and buying my house, through other crises like losing aforementioned jobs. And through MS. They were there for me in the hospital and afterwards. Always, always, always offering help. “What can I do?” they will ask. And what have I said? “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. Church asked, “Can we bring you communion? Me: “Oh, no I’m good.”, thinking of all the people who were sicker than I was and needed them more.

 

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.


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 blinds drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

 

D. E. N. I. A. L. Oh, and stupidity and stubbornness as well. 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. Ask for help. Let people help you (they really like to!). My denial has cost me dearly and is going to cost me more in the long run.

 

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If you have a similar list of Mistakes You Have Made Since Learning You Had MS, please e-mail me at nourishblog AT optonline DOT net. I would love to set up some guest posts.

 

Next will be The Best Things I Have Done Since Learning I had MS.  There actually are some!  :)

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