Newly Diagnosed with MS

I have tried so many times to write a blog or make a video for someone that is newly diagnosed with MS,   I write 1000’s of words, then I reread what I have written, only to realize the advice doesn’t apply to everyone.

The reason for this is that MS is not a “one size fits all” type of disease.  I don’t mean because there are 4 different types of MS, I mean because it affects every single person differently! EVERY SINGLE ONE!

Not only will MS affect YOU differently than it affects your cousin’s sister’s uncle’s aunt that has MS, but any treatments YOU might try will affect YOU differently as well.

I have made this video, more than anything so that you realize YOU ARE NOT ALONE!  As you wade through information on Dr. Google, and hear stories from other people PLEASE, PLEASE, PLEASE keep in mind that people are only sharing THEIR STORIES.  (and negativity breeds negativity)

Some people will tell you to read everything you possibly can about MS.  (Dr. google is a scary monster) Others may tell you to join support groups, Facebook groups, eat an all natural diet, take this drug or that drug.  My cousin swears that “…..” works….BUT you need to pick what works for you.

MS is unpredictable.  There is good and bad information to be obtained from the internet and social media.  If you keep an open mind and are aware of the possibilities, you only prepare yourself for the worst case scenario. You can’t live your life in fear of the unknown, THAT alone can paralyze you.

Below is another video in which I talk about not only how I was diagnosed, but also how I “met MS”.

My story- being diagnosed with MS

So my advice to EVERYONE that has been newly diagnosed with MS or another chronic illness is to:

  1. Take a deep breath
  2. Take another one
  3. Acknowledge that while this may suck, there are worse things in the world
  4. Learn everything you can about your condition, BUT also pay attention to the source ( even if you learn what NOT to do)
  5. Advocate for yourself and do what works for YOU
  6. They call it “practicing medicine” for a reason. Get 2nd and 3rd opinions.
  7. Surround yourself with positive people
  8. Learn to laugh at yourself

As I mentioned at the beginning, it feels like a whole different lifetime since I was diagnosed, (and it has only been 20 years) New ideas and treatments are coming out and being discovered every day.  Never give up!

If you are looking for a place to start your research, here is a link to the National MS Society.

If you need to talk reach out, send me a message, ask tons of questions. In the upcoming week, I have asked 3 other bloggers with MS to share their stories on this page, and or to share their advice about what does and doesn’t work.

This Best of luck to you on this journey!

 

 

13 comments

  1. I would likewise struggle to put something together for stomas or fibromyalgia for the same reason of experiences being so different for everyone; no advice will ever suit or fit all. You’ve done a great job with this though and I love the point about getting 2nd and 3rd opinions because it’s calling “practicing medicine” for a reason!! 🙂
    Caz x

    Liked by 2 people

  2. You my dear are absolutely amazing! Your strength and courage is inspiring to me! I want you to know that I think the world of you and I am ALWAYS here for you in any way at all! Even if I am on the other side of the country, you will always have a friend in me:)!!!!

    Like

  3. Grace, this is a terrific post and you are super fucking awesome!!!! Having a totally unpredictable disease myself, if I had read and heard what you are saying here, it would have been so incredibly helpful at the time of my diagnosis. It is all so important and you are helping so many people!!!!

    Liked by 1 person

    1. Can I adopt you? OMG you just made me feel 10 feet tall!!!! FOR the record, I think YOU are pretty fucking awesome yourself! I started a post a month or more ago about the worst symptom of ms and came to the conclusion that it’s the one you haven’t learned to “manage” yet. That and the unpredictability. I am so glad to have found other like minded inspiring people

      Liked by 1 person

    1. Now you are resorting to making me cry? as if you making me spill my coffee wasn’t bad enough 😛 Thank you for your encouraging words Kim. I have found so much inspiration from people like you, I just want to be sure that I am contributing. I know that you understand the feelings or anxiety and self doubt at times, if I can help even one person with their struggle it fills my heart

      Like

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