Living A Quality Life With MS: Learning From Others

“There is no end to education. It is not that you read a book, pass an examination, and finish with education. The whole of life, from the moment you are born to the moment you die, is a process of learning.”~Jiddu Krishnamurti

I recently wrote an article about the importance of tending to your emotional and physical health while living with Multiple Sclerosis.  It was a cathartic experience for me, and gave me a chance to take a look back at my own long journey with the disease.

It’s been 28 years since I received my diagnosis.

Since then, I’ve learned a thing or two about living a quality life despite having an unpredictable and unexplainable chronic illness.  I thought I’d share a few things I’ve learned since then.

I hope you find what I’ve learned helpful, particularly if you’ve been recently diagnosed.

COMMUNICATION – Your MS is just that: yours. It’s up to you whether or not you want to reveal your diagnosis to others.  It is a personal choice, and you should not be persuaded by anyone about this decision.

What worked best for me from the start was to be open and honest with my family and friends.  It felt good to be able to frankly discuss what I was going through, so they could learn about MS and how it affected my life.

Those closest to me wanted to share in my experience and help however they could.

YOUR MEDICAL TEAM – A neurologist who didn’t specialize in MS first diagnosed me.  He was amiable, and tried his best to be helpful, but he wasn’t involved in any cutting edge research (even though there were no FDA approved medications yet) and he didn’t see many patients with MS.

I decided to find a neurologist specializing in MS.  I wanted my doctor to be well versed in all things MS.

Speaking of doctors, make sure you are absolutely comfortable with yours.  You should feel he/she is a part of your team; like-minded and understanding of your needs, and ready to listen to your list of questions.

I have changed doctors several times after I felt they weren’t satisfying my needs.  Don’t be afraid to keep looking for one that suits yours.

EMOTIONAL NEEDS – When you receive a diagnosis of MS you have many questions. This can be daunting, and at times seem overwhelming.  You may feel scared, sad, depressed or lonely.

This is an important time to stay in touch with supportive friends and family.

If you find this is not enough, seek help from a qualified therapist.  Talk therapy is very powerful, and can help you in your quest for better emotional health.

HOLISTIC MODALITIES: I find that being spiritually active is a healthy and rewarding activity that takes very little time to do.  It provides a means of removing stress from your life, and helps place more focus on the blessings and positive forces surrounding you.

I don’t mean you should dive into some obscure occult or all of a sudden “find religion“ (of course if that’s your fancy then by all means do it!) I simply mean that doing something that’s meaningful to you might help soothe your soul and lift your spirits.

Over the years I’ve tried yoga, t’ai chi and qigong.  I’ve practiced (and still do today) mindfulness and meditation.

Whatever cocktail you create for yourself, the key ingredient is to find something that is calming and leads toward a better quality of life.

BE AWARE AND READY TO LEARN MORE – Information regarding Multiple Sclerosis, including statistics, polls, clinical trials, alternative medicine, diet, exercise, and any FDA approved medication changes every day.  Make sure when you’re reading about MS, the information you are reading is from a reliable source.

Ask questions if you have them. Attend MS related (on or offline) events to further your knowledge.  Subscribe to credible newsletters. Seek help from knowledgeable people you trust.

Staying current with what’s new in the world of MS is important for your health.

What have your learned about MS that might be helpful for others to know?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • Carrieb
    5 years ago

    Did not mean to preach. Just to help…

  • Carrieb
    5 years ago

    I’ve learned more in my 8 years of diagnosis than throughout my life pre MS.
    I’ve experienced all emotions and I’ll focus on getting out of the worst isolation depression and anger.
    We will all have it even those who deny it.
    Get involved, make someone else’s day better and you will feel better. Things I’ve done:
    WalkMS
    Diy (do it yourself fundraising)
    Have one or 2 MS friends. Mine live far away. We call to check on each other. We cry we support, we laugh
    Spread the word. Explain MS, so many have no idea what it is
    Volunteer at your local MS Society, or other organization. You can make phone calls in their offices or at home, plus tons of other things. The calls put you in contact with a lot of MSers. Benefits go both ways.
    Be an advocate. I travel to Annapolis and DC to focus on research, funding etc. Don’t get me wrong., I have cancelled many times due to a flare or just a bad day. It’s OK. They understand.
    So, these things, although difficult to drag myself up or out At times, make me feel like I’m making a difference. It does my heart and mind well! Today is one of those days. I’ve had a dark cloud following me and my family since the new year. I know I’ll feel better later today!

  • Cathy Chester moderator author
    5 years ago

    Excellent, Carrieb! No preachy, just wonderful!

  • Christie Germans
    5 years ago

    Great post Cathy! One thing that helps me is to remind myself to keep doing the things I love. This goes such a long way. It helps me refocus and not dwell on the diagnosis itself. Cheers!

  • Cathy Chester moderator author
    5 years ago

    Thank you, Christie. Any approval from you is very meaningful to me!

    I agree about doing things that make us happy. That is so important and, yes, it certainly does go a long way!

    Cheers to you, too!!
    Cathy

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