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.
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?
How many specialists did you see before finding "The One"?