Multiple Sclerosis – Strength From Sharing

A few weeks ago, BEFORE the flair up, BEFORE the flu, BEFORE the fear and panic set in, I was on the phone with someone.  Someone that I know very well and someone that I know has read anything and everything that I have written about living with this disease.  When I mentioned that I hadn’t been feeling well, this person’s response was “but I have been keeping up with your blog, and you make it sound like you have been doing well…..so you have been lying?”  

It hurt to hear this.  It made me sad.  But it also flooded me with frustration.  Because I feel as if I have done a lot to share what it is like to live with a chronic illness.  I feel as if I have worked hard to try and remain transparent and to let others know about all aspects of living with this disease – the good, the bad and the ugly.  I feel that I talk about the volatility of the disease, that I mention that things can go from good to bad almost instantly and yet here is someone that has read all I have had to say, and still doesn’t “get it.”

The truth is I understand why or how someone could think this.  After all, how can I go from being “reportedly” SO good to SO bad so suddenly?  Am I good or bad?  Which is it?  Am I managing my MS or is it managing me?  I understand the urge to say “wait, didn’t you just say you are loving cannabis and that life is better?” Because, I did just say that.  But the thing with MS is, I don’t get to decide what it is going to be like.  I don’t get to decide how I am going to feel.  I don’t get to decide if it is going to be a good or bad day.   Everything happens suddenly and everything is constantly changing. I don’t have any control over it.   I can go from the highest of highs to lowest of lows in just a matter of minutes.  I never know when it will happen, I can’t really predict what makes it happen, and I can’t do much to stop it from happening.  It is just simply a part of my life and it is damn near impossible to really and truly explain what it is like.

In order to try and clearly depict what it is like, would require me to live stream my entire life every minute of every day because it is a constant and fluid thing – always there and always changing.  But even with a play by play portrayal of my life, even if I had a camera following me around 24/7 – viewers still wouldn’t have a clue about what it is like because so much of what I live with is invisible.  No one knows what is going on in my mind and my body but me.  It is like I am walking around with a secret…a big, huge, ginormous secret.   

So yea, I do admit to lying.  Am I good or am I bad?  The answer to that is “it depends on who is asking and when they are asking.”   When I am at the grocery store and the checkout clerk asks how I am – I am going to say “GREAT! And you?”  (even if I am having the worst day ever.)   Because to not lie, to try and explain even some of what I feel at all times would completely engulf all other aspects of life.  It would require me to talk about nothing but the disease, in order to let anyone know “how” I am.  I realize that NOT telling my checkout gal that my mind is foggy as fuck, that I can’t see jack shit and I am really doubting whether or not I can make it out to the car because my legs feel as if someone has strapped cement blocks to them”  falls within societal norms.  People don’t automatically go into overshare mode when greeted with the standard question “how are you.”  But because I often am experiencing some or many of the random symptoms when asked, it always crosses my mind when I respond with “good,” that I am lying. 

  On a bad day, when I am asked by my kids or my family how I am doing- I will tell them it is a “bad day” but I won’t elaborate beyond that – because there is just always too much to say and so much of it is hard to grasp and impossible to explain.  It is exhausting to try and deal with it on my own, so to share and to try and let other’s know what is going on at all times can seem insurmountable.

Yet, as difficult as it is, to try and explain it all, to put into words all the things that happen during my day I have found that getting the words out there – trying to explain all this crazy shit, has really helped me. By talking about it, by sharing stories and acknowledging all those things that mess with my mind and that screw with my ability to do things makes them a little less invisible.  It puts out into the world what is going on inside and for some reason, just that simple thing changes how I view and deal with each of these symptoms. Once they are out there, once I have talked about them, and tried to explain them, they often become jokes, things that I can poke fun at.  The ability to laugh at all the bullshit is one of my most valuable weapons in my battle against this disease.  

I am extremely grateful that I started this blog and began sharing my stories. I am thankful for all the connections I have made, all the other MS warriors I have gotten to know.  I value the friendships that I have made and look forward to making new ones.  I am most grateful to have a partner that really and truly listens, that tries to understand what it is like. I share with him.  I share a LOT.  I probably share too much, but it is something I need to do, I need to try and explain it all.  He understands that I am not telling him to try and gain sympathy or pity.  He knows I am not complaining, or seeking attention.  He knows that I just need to try and put into words all the things that MS does to me – all day, every day.  It’s become “a thing” with us.  Wherever we are, whatever we are doing, there is always an ongoing commentary, about “what my MS is up to.”  The more I share, the more he seems to “get it” and having someone that understands and that is willing to laugh along with me makes it all a little bit less scary, and a lot more bearable.  

 

“I can’t get rid of the disease, but I can at least let others in and try and let them know what it is like.  Having someone else know makes it a little less lonely.”

 

**This is my personal blog and all opinions are my own.  I am not a doctor, nor do I play one here on my blog. The content here is for informational and entertainment purposes only and is not intended to replace the advice of medical professionals.  Be sure to contact your doctor before trying any new medications/vitamins/supplements, physical activities or therapies **

22 Replies to “Multiple Sclerosis – Strength From Sharing”

  1. Thank you so much for sharing your thoughts with all of us. You so often express just how I and others really feel. I just can’t put it in writing the way you do. You have truly given a voice to my thoughts. I also enjoy the comments others have posted. I know I feel less alone on the journey I’m undertaking. I thank you so much for that.

    1. Hi Paula! Thanks so much for taking the time to read and for your kind words. As you know it if often times difficult to try and explain all the shit that comes with living with this disease. Sometimes I feel as if I do an adequate job and other times I wish I could explain it better!

      Cheers!
      Meg

  2. You are so on the point with this Meg! Sometimes it is so much easier just to go with the flow of community conversations. Somedays we do not have the energy to go into detail of how we “really” feel on any given day. No, I don’t feel we lye when asked how we feel. I know often I just don’t want to deal and focus on the negative aspects of the day and what is happening to me.

    Thank you for doing your blog. I recently have been visiting and reading it. You have inspired me to start back to writing and sharing my journey as well. Seems this community understands more of what we are going through and sharing it makes others feel we are not alone.

    1. Hi Sherry! Thanks for sharing and your kind words. So glad to hear you are writing again. More words means more people may begin to understand a bit more about what it’s like:)

      Cheers!
      Meg

  3. Oh my goodness.. it’s like you reached into my brain & stole all my thoughts on this subject.
    Thanks for putting into words what I could not. I’m going to send this article to my friends & family so they can ‘get it’ a little better 😊

  4. “I am extremely grateful that I started this blog and began sharing my stories.”

    I’m grateful, too.

    The thing about chronic illness is that it’s always there – whether well ‘managed’ or not. Don’t let those who don’t ‘get it’ bring you down too much – save your energy for laughing with your ‘someone’.
    peace

  5. Meg,

    As another MS patient, I get this irritating response quite often. It always helps me to recall that most people hear the words but then fail to comprehend EXACTLY how this would feel to the OTHER person. The most usual response seems to be heard but interpreted against what the person hearing is feeling in themselves, not what you are feeling. Realizing this as a normal part of the human condition helps me to understand how other people can come across as uncaring , unfeeling, or just plain dense.

    1. Hey John!

      Thanks so much for sharing! I try and remember that it is difficult to imagine how anyone else feels because our own experiences and perspectives always come into play:)

      Cheers!
      Meg

  6. I hope you’re doing ok Meg and so sorry to hear about your flair up. I think we all ‘lie’ when it comes to saying how we feel. I know I do. It can be because it’s someone I don’t really know or I just hate saying that I feel bad everyday. :/
    Great post as always. 🙂 and Happy Halloween. 👻 xxx

        1. It’s one of the things I love about having the opportunity to actually talk with others with MS – puts their voice in my head so it’s not just my voice in there all the time:)

  7. Again another brilliant posting, we all do it say “I’m fine” mainly because as you say people ask because they feel they should, not because they really care, or should that be give a stuff.

  8. Atta girl, Meg! You are speaking our truth and doing it well. It’s our shared reality, and I am standing alongside of you holding you up as you hold me up as well, and we support the entire community, one by one, together. Our community totally understands each other!

    1. :). I was thinking the other day that each MS warrior I have gotten to know brings their own strengths and interests to the battle and together we all make up a damn good army!

      Cheers and be well!

      Meg

  9. I totally get it. I live with this disease also. I was diagnosed 17 years ago, so yeah,I get it.

    People that do not have this disease themselves, cannot possibly understand what is like.

    I have tons Of supportive people in my life. I am extremely grateful for that.

    I have also been experimenting with cannabis. I found a strain called Cannatonic. High CBD low THC

    It is actually very uplifting and motivating. I love it!

    Rest assured, Get everything that you are saying

    1. Hi Faye! Thanks so much for sharing. I have had a few others mention Cannatonic so I’ll have to add it to my “shopping” list:).

      Cheers!
      Meg

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