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No More Struggles

Like sand in an hourglass so are the days of our lives. LOL!

I calmly said to my husband as we headed to my weekly hairdresser appointment, “I wonder when I’m going to die?”

His very masculine answer was, “Is it your time of the month?”

I told him that was beside the point (Although it actually was).

Sometimes I get reflective. Often when things aren’t going my way, I morbidly tend to wonder when all the struggling is going to be over. Not that I want to rush it or anything. I’m just always looking for some kind relief.

I have to keep reminding myself that there was a time when I was hospitalized hundreds of miles away from my family. When going to the beauty salon was not on my mind. My utmost concern was just making it through the day. Like we all do.

As we continued toward the salon my husband saw I was a bit agitated and retorted with, “We all wonder when we are going to die Nicole. Personally, I plan on living as long as I can. Remember that because when they ask you about pulling plugs on me you yell, hell no. He wants everybody in here to come jump up and down on his chest if need be!”

I said okay, because I want to die first anyway. Is that strange? I just can’t imagine being a big burden on anyone else besides him.

Don’t get me wrong my health is stable. I’m going to the gym as often as possible. I take my medication and I pray to a God that has me on this path for some unknown reason. So at the end of the day, even though I don’t like it, I might as well make the best of the life I’m blessed to have.

Others aren’t so lucky. At the worst, my life with MS has been a multitude of astronomical inconveniences, but not deadly. That’s going to have to be enough for now.

Then we entered the hairdresser and everyone shouted, “NICOLE!”

I in turn, smiled and figured I’d stick around one more day.

34 thoughts on “No More Struggles”
  1. KIM 7 November, 2012 on 6:39 AM Reply

    DEATH, who doesn’t think abt it? But it is something we all will eventually face. having MS does change my thoughts, however, I am sure they are no different from any other person facing a chronic disease. Yes,I also want to go before my husband, that way he will have some time to do what he wants. I could not imagine living w/o him; he is just to good, too funny, too caring & he is what keeps me going. When I leave this earth I know we will be together again & it will be with all the people we love & have missed & our Saviour!

    • Nicole Lemelle 8 November, 2012 on 12:31 PM Reply

      Kim, thanks for putting things into perspective. I agree with you.

    • laura 13 December, 2012 on 10:12 AM Reply

      You are an inspiration to others Thanks!

      • Nicole Lemelle 13 December, 2012 on 12:55 PM Reply

        Laura, Thanks so much. I’m just living life the best way I can.

  2. Lisa H 6 November, 2012 on 1:55 PM Reply

    I wonder how I will die. With PPMS I do have an advanced directive I will be giving it to my doctor on Thursday. I know how I don’t want to die and the advanced directive assures me of this.

    Some days are dark. I just went thru a four day depression but am pulling out of it now. These are the days I think about topics like this. It is temporary.

    I play with my granddaughter and all the bad goes away. I realize how lucky I am. I lived thru cancer, I lived to see her born and my son happy. The good out weighs the bad for me, so far.

    • Nicole Lemelle 6 November, 2012 on 4:23 PM Reply

      Lisa, Yes, the goods out weigh the bad. Again ,thanks for reminding me.

  3. Muff 6 November, 2012 on 10:45 AM Reply

    I remember someone describing the doctor giving the MS diagnosis…”The good thing is you won’t die from MS; the bad thing is you won’t die from MS.” Don’t we all wonder about our demise at times? I still want to go on living, but there are times when I think about it. (BTW, your husband sounds like a wise man!!)

    • Nicole Lemelle 6 November, 2012 on 1:19 PM Reply

      Muff, It’s good to know I’m not alone on this one!

  4. sharon bannister 6 November, 2012 on 10:36 AM Reply


    I want to be first. I cannot imagine life without my wonderful, patient husband helping me cope. At the same time I don’t want to leave my children so want to be here until Im 110!!

    • Nicole Lemelle 6 November, 2012 on 1:22 PM Reply

      Sharon, I don’t have to worry about any children! My husband I love him to death (no pun intended) but he’l be fine without me!

  5. Sick 6 November, 2012 on 10:30 AM Reply

    i want to die sooner than later. i worry i will be trapped in a body that no longer works but still fully there in my head. Other than one child, I am alone in this world. My child seems selfish and detached. It could be an age thing but I worry its her way of dealing with all my illnesses or even worse once she no longer needs me to care for her will leave me for dead. Even before MS Dx, I believed Dr. K was right for how he helped people. I had worked as a CNA in a nursing homes when I was younger and some of the mistreatment by nurse and other CNAs hurt me, but imagine being the victim. I reported one to the state and was fired shortly after for talking with patients. It was explained that you were not supposed to build connections or show favoritism. Once MS Dx came, I knew at some point I would be either following his guide or taking advantage of PAS if it became available. Eight years later, and more health issues than any one person should have. I finally have a terminal one that without treatment means if I am lucky I only have at best, if I take real good care of myself, 10 years left. Many think I am crazy to ignore it, but many have no idea the unfortunate hell I have endured in the years since my birth. Nor will they ever comprehend the suffering of these illnesses. Then combine all of that with lack of health insurance or ability to pay for health care, including necessary medicines needed to sustain life or even just pain relief. The bright side in my life is my death sentence. Now I can finally live.

    • Nicole Lemelle 6 November, 2012 on 1:29 PM Reply

      Sick, I can’t imagine what life is like for you. You sound like you are hurting from inside out and that pains me. You said the bright side os life is your death sentence. On one hand it also sounds like you’ve found some sort of peace.

    • Lisa H 6 November, 2012 on 2:10 PM Reply

      Sick, I understand how you feel. I am a cancer survivor and once I was dx with MS I stopped going for cancer screenings. I don’t do any preventative medicine. This takes a burden off me. So many cancer reoccurrence scares have made my life very hard. I feel free now. It is hard to explain this to family and friends. I wear a do not resuscitate bracelet. I don’t want to be brought back just so I can fight MS. I am 56 and have had a great life.

      I get the relief you feel. Weird but understandable. Can’t judge anyone’s decision in the matter of death.

  6. Leigha 6 November, 2012 on 9:41 AM Reply

    One of my favorite posts. This is a topic that transcends MS and is a univsersal “concern” that we all have. You did an awesome job illustrating how to rise above the thought and seize each day…one day at a time!! Love you, Ni Ni!!

    • Nicole Lemelle 6 November, 2012 on 1:31 PM Reply

      Leigha, Thanks boss. Consider it your little personal gift!

  7. Laurie Hanan 6 November, 2012 on 9:31 AM Reply

    I just had the same – brief – conversation with my husband 2 or 3 days ago. Basically, he doesn’t want to talk about it, shrugs it off. But it’s been on my mind so much, it slipped out of my mouth. Some days I am just so tired of the never-ending struggle. He quickly changed the subject.

    A friend of mine died of MS at age 31. She choked to death, with her sister sitting right beside her. I am 54 and I choke often, and sometimes it’s so bad I think “This is the end.” Another friend of mine died of MS just recently, at age 61. She didn’t choke, but had a seizure. Maybe that’s how I’ll go.

    I definitely want to go before my husband. How could I possibly take care of all the issues he’d leave behind, much less take care of myself? But I want to outlive my mother, who is 77. She sure doesn’t deserve to know what it’s like to lose a child. And God willing, I’d like to see my youngest child turn 18. He’s 11 now. And who would take care of my service dog, who loves me and depends on me for her very life? She’s almost 5 now. I figure if I can hold on another 10 years, all those issues will be covered and I’ll be free to “let go”. But endings are rarely ever that neat.

    • Nicole Lemelle 6 November, 2012 on 1:39 PM Reply


      How do you know all these folks who passed due to complications of MS? You know daily life for me is doable. I don’t have any children or animals, just a grown husband who I figure will care for himself. I’m betting on his continued health. Now my folks on the other hand, I’m go after them.
      But this entire conversation is a bit unsettling.

      • Laurie Hanan 6 November, 2012 on 4:23 PM Reply

        The two ladies I mentioned belonged to an MS chat group I joined 9 years ago, way before Facebook existed. The group disbanded but some of us have remained friends on Facebook. And they are not the only two who have died, but others were over 70 so it didn’t come as so much of a surprise.

        Your blogs are always so timely, you talk about the things that are on my mind. Death feels closer now than ever, and it’s been on my mind a lot. Possibly because I have choked so badly and so often lately. I also have a hard time breathing at times, it just seems like too much work, and it’s like if I don’t breathe consciously, I forget to breathe. I often have dreams where I’m smothering and can’t pull air into my lungs – probably because my breathing actually does stop. Same with blinking my eyes. Lately I have to blink consciously and sometimes I forget until my eyes start burning like crazy. But of course we are all on a journey toward death and none of us know when or how we will arrive at that destination. The only think we can be sure of is we will get there.

        • Nicole Lemelle 7 November, 2012 on 12:05 AM Reply

          Laurie, Ohh, that makes since. Things like this come to mind when I’m not feeling to well.But you’re right we’ll get there.

  8. life well lived 6 November, 2012 on 9:24 AM Reply

    We all need a reason to be.

    When we have a roof and some food, we all start to wonder. (thank you Maslow)

    We all need to be able to look in the mirror and see a person with purpose. It’s the purpose which drives us, gets us up when we feel we could lay down forever.

    We need to feel we offer something to someone, and the costs aren’t too great for those about whom we care.

    Obviously, you bring joy to those around you whether it’s at the salon or reading your blog. You clarify what many of us feel.

    I agree with you on the spouse dieing first. I don’t want to pick up my emotional peaces if J dies first. As it is, I have a hard time thinking my daughter might not out live me (odds with her heart condition).

    • Nicole Lemelle 6 November, 2012 on 1:49 PM Reply

      well lived,

      That’s it. Purpose. Sometimes I lose sight of mine. I love blogging, but shouldn’t let this blog be 100% of who I am. Does that make since? I just write what I feel. To have you guys read it is icing on the cake.Thanks for coming back every time!

      • life well lived 9 November, 2012 on 9:01 AM Reply

        Your blog indicates you are still a social being. Of course, your world shouldn’t be composed entirely of this blog. If it did, I suspect the subjects of the posts would bore readers rather quickly. The blog seems simply a reflection of your life, one with which many of us relate.

        As for how much of your “value” or “identity” is tied in the blog, only you can say. Still, don’t short change how much many of us look forward to your posts and how much they enrich our lives.

        I have a sick friend who plays world of warcraft a lot. His parents complained, but all I could think was “here is an 18 year old who fell and broke his back. Let him care about some thing…anything. Depression would seem so normal with the loss of ability to move anything from the belly button down. They should worry if he stops caring. At least he picked a social game where for a few hours a day he can pretend.”

        I like the quote on exercise where the best exercise program is the one you are going to do. Like that, I say for MS patients who seem to have every excuse to turtle up socially, anything we will do to stay connected is crucial. Your blog is a reason for some to stick their neck out, and I’m guessing maybe it’s your reason to come out. Maybe their should be a virtual MS vacation for/with your visitors? Where to?

        • Nicole Lemelle 9 November, 2012 on 8:12 PM Reply

          well lived, You don’t know. I may look forward to your comment as much as others look forward to this blog. At the end of the day I don’t believe my identity is wrapped up in it. Thanks for your perspective.

  9. Jackie 6 November, 2012 on 9:04 AM Reply

    I totally understand that feeling, but it scares me because of my youngest daughter, whose name happens to be Nicole! She’s 9, and is too attached to me to be able to deal with my not being here. Not that I plan on leaving anytime soon…I guess we are a burden to each other at some point in life, some situations being more extreme than others. Just keep telling yourself, that’s what family is for. Unconditional love, your husband sounds like he’s a great support for you, and wants to be there. I can’t wait to get to heaven, but I love what you said about being scared to see him face to face, me too honey! One day at a time, moving as long as the good Lord allows…;)

  10. My Odd Sock 6 November, 2012 on 8:48 AM Reply

    Sometimes I wonder. Other times I can’t be bothered.

    Many times during this political season, I just thought..”Please put me out of my misery!”

  11. Michele Valentine 6 November, 2012 on 7:46 AM Reply

    I am a Christian. I surrendered my life to Jesus over 16 years ago. That spiritual transaction sealed my fate. Heaven will be my home. I’ve had MS for 10 1/2 years and I have pondered my death as well. The Lord knows all our days. When He calls me home, hallelujah! I can’t wait to see Him face to face and shed this diseased body. :)

    • Nicole Lemelle 6 November, 2012 on 7:56 AM Reply

      Michele, I don’t quite know if I have your conviction. The idea of seeing him face to face still scares me, but I’m happy for you.

  12. Rhonda 6 November, 2012 on 2:33 AM Reply

    Another great blog… It actually put a big smile on my face when I finish reading it.. Life moves on and we just go with the flow!

  13. Angela 6 November, 2012 on 12:40 AM Reply

    like you I want to be first, not for selfless reasons as being a burden. Reason being I dred to think of the energy required to pack up all his hunting stuff. I heard this quote the other day “if you are breathing God has a purpose for you” ! Humbling

    • Nicole Lemelle 6 November, 2012 on 7:49 AM Reply

      Angela, It comforting to be reminded of that. Yes, it’s a quote that sort of steers me toward the good in myself.

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