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Coping with MS: Breaking the Cycle of Defeat

Coping with MS: Breaking the Cycle of Defeat

Shock and awe. That about describes the feeling when multiple sclerosis entered my life.

In the years following the diagnosis, changes came in small doses for me, some changes more obvious than others. No matter how I look at it, everything is different than it was before, though not in an entirely negative way. Perhaps some of the changes that I casually attribute to MS would have come regardless. Unlike the neat chapters in a book or the tidy absolutes of episodic television, life’s ups and downs tumble around in no particular order or regard for what else is going on. New episodes begin even while old ones are in mid-stream and unresolved.

Most of us understand and accept that life isn’t fair. Much like a board game, we pick a card… roll the dice… spin the spinner… and we get what we get. Unlike a simple child’s game, though, there are a myriad of choices to be made that directly affect the outcome of those random events.

Comparing ourselves to other people with MS borders on self-abuse. Among us are mountain climbers and marathon runners, nursing home inhabitants and the desperately ill, and everything in between. MS takes many forms and the experiences of other people don’t necessarily reflect our own reality or decide our fate.

When my symptoms first got the best of me, I froze in place. Because I knew I couldn’t clean the whole house, I couldn’t motivate myself to start the process. Because I couldn’t put in a full day’s work, I thought maybe I shouldn’t work at all. Because I couldn’t walk a mile, I didn’t walk a quarter of a mile. I was giving up before I even got started! Doing less only served to make me focus on my physical discomfort and emotional distress about not accomplishing anything. I knew if I continued on in this dangerous cycle of defeat I would be lost.

Attitude matters, and knew I had to change mine. In my last post, I wrote about taking over the chore of doing the dinner dishes. That was only the opening salvo in a small war I was waging with myself.

It finally dawned on me that if a full day’s work was too much, then a part-time job might be manageable. It was. If I couldn’t clean the house, then maybe one room would suffice, or even one section of a room. It did. If I couldn’t walk a mile, then a stroll around the backyard might be nice. Indeed. If I couldn’t write ten chapters, then one page would still be progress. It is.

Eventually, I turned my entire train of thought around to focusing on what I could comfortably accomplish, rather than some misguided notion of what I thought was my duty, based on my pre-MS self. Breaking life down into smaller doses made it infinitely more manageable. I could do so much more than even I realized!

Ah, sweet relief. Now I just do what I can do and no longer concern myself with unrealistic goals. What I can do still changes from week to week and even day to day, and that’s okay. I take pleasure in what I’ve done and put aside what I haven’t. Tomorrow is another day.

Just because I was diagnosed with MS, it didn’t follow that other life events could be put on hold while I sorted things out. Because of that, my attitude and my way of viewing the world, and the way the world views me (or at least my perception of how the world views me) have shifted. I am a much more patient person, more content and more confident than I’ve ever been, even as I’ve lost some of the independence I so prize. Of one thing I have no doubt — what I have gained is far greater than what I have lost.

The cycle of defeat has no place here.

March is Multiple Sclerosis Education & Awareness Month. Read on:

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo

Read more: Blogs, Conditions, Health, Living with MS, Mental Wellness, Multiple Sclerosis, , , ,

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7:09PM PDT on Apr 10, 2010

Lovely article. My mother has suffered and struggled with MS for over forty years and she is my hero for being such an optimistic trooper! Her courage has been an inspiration to me over the years and encourages me to fight my own battle with PTSD.

10:54AM PDT on Apr 5, 2010

Very healthy viewpoint- and I am passing this along to my daughter with MS so she will reinforce her own attitude (very similar). Thanks!

6:48PM PDT on Mar 26, 2010

thank-you for this article.......it is deep and poignant......and i am sending it to a friend whose daughter has MS......thankyou....

8:45AM PDT on Mar 25, 2010

good to know, thanks:)

8:27PM PDT on Mar 24, 2010

To Laura, thank you and I truly appreciate the difficulties your dear friend has. I hope your friend has some good days. Perhaps I sound like poor me in the comment that I wrote, but actually despite how badly I feel at times I try very hard to do the best I can and often remind myself of how so many others have a situation worse than mine; especialy little children just beginning their lives. My comments have so much to do with releasing much stuffed down inside, awful emotional pain and stress about being wrongly accused of a terrible act, spending time in a situation I should not have encountered in my life, and without much of a break after that situation; being diagnosed with MS. With MS we all share certain symptoms, however, over all; it affects each of us in an individual way. I often speak of what I'm grateful for, but for one who was used to being independent and doing whatever needed to be done, it is hard for me even after all these years; to accept the limitations MS has caused. It bothers me greatly that I cannot help others, for I have always enjoyed working with the public and being in customer service. Last night and tonight, are the first time in a long time; that I am even on the computer this much. Ususally I don't feel well enough to turn it on. I am grateful again. The unknown frightens me more than anything else with MS. I don't like drugs, so I choose not to be medicated. I have heard from some people that is not really good. Hugs, Linda

1:01PM PDT on Mar 24, 2010

I have a dear friend who has MS (the progressive type). Despite many frustrations and challenges, she continues to have an attitude of strength, grace and determination. She never ceases to amaze me !!

10:24PM PDT on Mar 23, 2010

Thanks! I've been struggling to cope (pretending that ignoring the condition would somehow enable me to do everything I was able to prior to diagnosis, which was around 10 years ago but has only really impacted on my everyday life in the last 3-4 years); I've recently come to a similar conclusion - anything I can do is so much more rewarding than doing nothing!

9:04PM PDT on Mar 23, 2010

I hope people don't mind that I'm writing twice here, but I wanted to convey some important information. Injections of drugs are not the only help with MS. Besides a stem cell treatment, there is also hyperbaric oxygen treatments. I have had three series of them and they helped so very much. Every day in the UK in 60 MS clinics alone it is utilized. In 80 additional clinics if it is used for CP, stroke, autism, wound healing, brain injuries, etc. At the time I had my treatments they were all in Canada, but I believe HBO is in clinics throughout this country; possibly in every state. Actually HBO would be less expensive than medication if it was acknowledged by the allopathic medical community. There are no side effects and it works at a cellular level. One breaths pure oxygen at a below sea level depth inside a chamber. Just type hyperbaric oxygen in on a search line and you'll find so much info about it. IT IS NOT AN ANECDOTAL TREATMENT, as the medical community states in this country. It really helps so much. Since it is an out of pocket expense I haven't had any treatments since summer of 04, but when I came back after the last series, it was obvious that my vocabulary was even improved. I put my cane down for three months without any maintenance treatments. Wish I could do some more. I believe in it whole heartedly from my experience with it. I actually had more energy also besides being able to walk normally. Check it out maybe you can do it even if I cannot. Linda

8:44PM PDT on Mar 23, 2010

My life was up and down and stressful for a long time, but when I shockingly found out I was pregnant after completing my first semester having gone back to school when I was 39; was unbelievable! To save on space, will not go into the details; but had my daughter fifteen years after giving birth the first time. The pregnancy was a huge emotional stress in so many ways, even though I had gone back and started my second semester. Physically I was very healthy and not overweight, but after giving birth I did have symptoms of MS, all of the almost seven years Chelsea Joy was here in my life. Only after in horror finding her in her room, attempting CPR for the first time ever, Chelsea being removed from life support, dying, my being arrested and accused of ending her life, being too afraid and intimidated to stand up for myself, so took a plea to something I hadn't done, being incarcerated, then going to a neuro and being diagnosed with MS in Oct of 00 and reading along with listening to info; did I realize that all the time Chelsea was here with me I had MS. All the light and sound sensitivity, the fatigue and irritability; were all symptoms of MS. It was a horrible experience ontop of the death of my daughter. I found out that my friends are my family and stood by me; but family weren't even my friends. This illness has been a kick in the head and gut. The difficulty with walking isn't as bad as how it has impacted my brain. It really frightens me and I am embarrassed. Linda

6:33PM PDT on Mar 23, 2010

Thank you for this post. I have a dear friend who was stricken with MS years ago. She is someone who I care about alot, respect and greatly admire the way she lives her life. She meets every challenge with great strength and looks forward to helping others every day of her life. (She is in a nursing home and continues to help seniors there as an advacate,every day.)

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