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  • michd2006

    Hi everyone, I have been away from this site for a long time.  Just recently got back on.  When I first found the site I was looking for help with my MS.  Received really good advise then didn't come back regularly as I should have.

    I have learned alot in the last 7 months.  I believe in "pay forward" so I wish to share this with you.  I hope it helps and doesn't insult anyone.  The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

    I have had a multitude of symptoms.  Number one is DEPRESSION!  I beleive this is the cornerstone to alot of my choosing not to do.  I have done mental health therapy with a counselor, PT and OT.  Through all of this I became educated.  Now I am realizing that I chose to stay in my poor me syndrome.  I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

    I hate the cognitive fog, fogetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion, I hated every part of MS and what it has done to me.  I missed the old me and desprately wanted to be fixed without having to work so damn hard to try to get back to the old me.  My neurolgist told me "change your attitude and you will feel better".  I was pissed off to say the least.  It has been 2 months since I have seen him, and I now know he is right.  I am in control of my attitude. 

    My depression was preventing me from living, and I chose to stay this way in misery.

    We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictiblity of MS. 

    I am trying to laugh alot more and trying to adapt to my challenges.  Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself.  There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel.  Exercise is very helpful mentally and physically.  I wouldn't exercise because I couldn't do what I used to do, so I chose not to do it.  This only hurts me more.

    So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory.  I had to realize I can't be fixed.  No cure for MS.  Accept this.  Then change your attitude from can't do to I can do.  Find the laughter!  As hard as it is to do, acknowlege we are not who we were before MS.  We are trapped in this auto ammune, unpredictable disease.  Say this totally sucks.  Then move on.  Start over building the new you.  Challenge yourself to be the best you can be each moment, acknowleged your success and failure.  If you fail, look at the reason why, did you bring this on yourself?  Sometimes we cause the situation, other times it's just the MS.  If the latter is the cause, move on, adjust then if you can laugh through it.  But you have to move past it.

    I type these words and know some of you won't get it and maybe it will help some of you.  I chose not to do alot, I needed to wallow through the misery of MS.  I will have bad days, and if I chose to stay there, this is my choice.  I can't imagine anyone not being depressed with a diagnosis of MS.  It's so devistating.  I remember when I was diagnosed I thought "oh thank God I'm not crazy", there was a reason for what was happening to me.  But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away.  Well it doesn't and everyday is a new day and full of challenges and ups and downs. 

    Also, how many times have we heard stress will exacerbate our symptoms, "try to avoid stress".  OMG!  Are you kidding me?  Ladies and Gents life is not stress free nor is it avoidable.  The key to success is how you handle the stress, not how do you avoid it.  I mean really you have this incurable disease that has robbed you, this is stressful.
    I have a new attitude (most of the time) about stress.  It is what it is.  I look at stress and think how does this really affect me?  I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it.  If you can end the drama, do it.  Set the boundaries.  Don't allow others to suck you into things that really don't affect you.  Shelter yourselves from the unnecessary drama.  This only zaps your energy and well being.  You need to protect yourself.  Stress is like an infectious bacteria that want to invade you and make you sick.  Set boundaries, make them know and put up your shield.  Some people may think you are being mean or uncaring.  So be it.  I know what I need to do to keep myself upright and moving forward.  If they can't accept this, then I guess they are not ready to accept me for who I have to be.  I can help them but only if they don't suck me into the stress and drama.  You need to see things in black and white at first, don't allow a gray area.  As I learn more about me and what I can tolerate, I may be able to not have such a strong forcefield around me.  But for now this is what I need to do for me.  This saves my energy for the moments I have to really deal with big stressors that take me by suprise.  Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick.  I can think clearer and reset the boundaries for each "big" stressful situation.  May the force be with you all!
    I hope this rambling helps most who read it.  Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy).  The bottom line is take care of yourself first, everyone else comes after you.  You need to find your "new" self and set realistic goal and boundaries and make them known.  Say them outloud for loved ones to hear and understand.  Ask for help, but don't ask everyone to do everything for you.  Rise to the challenge and find the "new you".  I never thought I would say this, but MS has helped me to see how the old me really wasn't all that healthy mentally or physically.  The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.
    Best wishes to you all!  Your friend in MS, Michele

  • Robn0470
    What an awesome post.  I just spoke with someone on Monday who somewhat told me the same thing about stress.  I can only focus on the things that affect ME directly.  If it doesn't and I have no control over it, then let it go.  You know we christians have a saying Let Go and Let God!  I have to often remind myself of this.

    I have not yet been diagnosed but I am going through the motions.  I too have that feeling, "at least I will know what's wrong with me and that I'm not crazy".  Thanks for the advice.  Great inspiration.

  • hope2012
    Thank You...for the realistic.. honest..positive and helpful perspective at a time when I needed to hear it ..some of it again...some new. I too have been away from this site for a long time... I hope that doesn't happen too often as this is a place like no other. 
  • debbiems
    Wonderful--you are awesome! 
  • maria1
    Michele, You are a fast learner. I had to trip overmyself a few times before I began to embark on the new life. Thank you for sharing, it has brightened my day.
  • BikeMama
    Thank you so much for this as it's so timely for me.  I was diagnosed in September and have really been struggling with losing who I knew myself to be.  I've allowed myself to be buried under the shock, the changes in physical and mental abilities and worrying about my future and that of my spouse and twin toddlers.  I had a cathartic episode a week ago and finally turned a corner toward taking control.  I finally have an alignment between knowing it's up to me and feeling that I have the fortitude to do it!

     
  • clarinetmom
    Thanks! Everything you've said resonates so strongly with me. Yes, stress is my biggest challenge. I keep trying to reduce it, but life does get in the way! I hope everyone gets the chance to read this. You put everything out there, and do it so well!
  • joynerthedad


    You feel free to express yourself....ALWAYS.
  • tammymc5
    I was so pleased to read your letter....thanks for posting...
  • SloJo
    Michele; You read my mail. Thank you for this. Over time I have become drawn into volunteering at my Daughter's school and have met many wonderful people. Forcing me off my ####. Today I was able to move and had the time that I went to clean the Dance Classroom and Gymnastics Viewing area at the Gym we take my daughter to. I cannot see the end of the staircase, but I can put my foot forward. I will never be the person I was ever again. I am really starting to like this new one. I have found; through every molecule of what you express over way too much time! Life IS short. I do have family and friends that are on the sidelines I deal with much guilt over. Your words have helped me today. My old self would tell me that sitting on the PITY POT will only give you ring around the ####. Time to listen. Cosmic. ;)
    SloJo
  • dalealan
    Michele.  You have learned alot in 7 months, all your points are right on taget,  Dale
  • debbiems
    Michele - I think your post is so incredible, I quoted your words in my blog article this week. and on my website.  I really admire you!  www.debbiems.com
  • michd2006
    Debbie I am honored you took put my post on your blog!  I hope it helps others.  MS is a lifelong journey that is unpredictible.  Each of us handle it differently.  We are all human, and we will have bad days, just like we did before MS.  This is life.  I know my before MS days I could handle anything.  I was the hub of the family, making sure everyone else was taken care of.  Now I center everything around me.  I was never selfish, but now I have to be to protect my health and well being.  It took a while for friends and family to understand, but the did.  My true friends stuck with me, the others who didn't really weren't my true friends. 

    I never thought I would use the word accept when it came to MS.  I accept I have the disease now.  I adapt to the challenges.  Each day I will do my best to move forward and I try not to look back and wish I was the old me.  I picture myself as a well built house.  Without a firm foundation the house will collapse.  My old house collapsed with me in it.  Devistated and depressed for months, wishing it all never happened.  I love the old me.  My neurologist told me, when I was crying my eyes out telling him I hate MS and what it has taken from me, to be grateful I was that person and had the opportunity to be that person.  He said some people never have the opportunity.  At the time that sounded obsurd, but he is right.
    So now I have cleared away the debris of the old house that I loved and was so very comfortable in and proud of and I am rebuilding.  I still have the old foundation of the previous house, but my new home is one level, not a two story house.  It is being build one step at a time, adapting to the challenges I face with MS.  It will be a beautiful house that will be comfortable in and I will love because it will be built with sweat and tears and reflect the new me!
    Thanks again for sharing my post with others!  You too are an inspiration to many.  I need to get your book soon.  I will put it on my kindle and carry it with me always. 
    Michele
  • debbiems
    I also put it on FB and LinkedIn.  Treatments and medications certainly are important; but what you wrote about (and how I survived MS myself for so many years) are fundamentally the best medicine of all.  In addition, I have surrounded myself with MSers with an attitude like yours, and would love to be connected with you!
  • edster420

    Hi I am Ed. Very funny comedic MSer on the shore.lease call me! 9172998037.

    cannot WAIT to ASSOCIATE!

  • michd2006
    Yes let's stay connected!  I hope the words I wrote will help.  I know this site and surrounding myself with positive people definately helps.  Thanks! Michele
  • michd2006
    It's so true!  Stress is a constant in life, we are the variable.  How we handle stress is the key.  Always think of how it affects you.  Our reaction to the stress is the key to success.   Being human gives us free choice, giving it to God and letting go of the drama is the key to success in my opinion.  Wishing you the best.  Remember Let go and let God.  Your friend in MS. Michele
  • edster420

    Also, you rock! 2009 was diagnosed. Married my Girl 11/11/11 so I can remember . I am a lonely soul with my little doggie. I wanna see people!

    9172998037!

  • edster420

    Also, you are not "nuts" we can challenge this awful condition. Together.

    9172998037

  • edster420

    Tho art truly awesome. Lettuce communicate 9172998037 edster@me.com

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