Awareness

Awareness

Awareness (noun)
knowledge or perception of a situation or fact

Speaking out about multiple sclerosis to others who may be dealing with this disease is actually helpful to me as well as, I hope, to others. It builds community, helps bring awareness to MS, and strengthens the MS movement that will ultimately lead to the end of this disease. – Teri Garr

March is Multiple Sclerosis Awareness Month. I like to say that MS is not all, but rather a part of me just like anything else. But like Teri Garr, I do feel like being able to talk about living with MS helps me, and hopefully others to understand the disease.

Some facts about MS that you can use to help others understand

2.3m people around the world are said to be living with MS, and 400,000 of those in the    U.S., though most people believe that the number is likely closer to 1m in the U.S. and  double the former figure world-wide. Unlike communicable diseases, MS is not required to be reported, so we have to rely on rigged insurance reporting and databases that we know aren’t accurate. And accurate reporting = more funding for research and a cure.

Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central    nervous system (brain and spinal cord). Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.

MS is thought to be an immune-mediated disease in which the body’s immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the central nervous system.

The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is also damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted.

MS is not contagious

There is no cure for MS

People with MS tend to live, on average, 7 to 10 years less than someone without it, though they say you don’t die from MS, but rather complications of it. And have 10 years less of employment due to physical impairment.

People with MS are twice as likely to be underemployed, underinsured, and food insecure. The treatments and meds to manage the disease are extremely expensive, and “budgeting” for a relapse is impossible.

Your help can ease the burden for people living with MS. If you can’t donate money, small things like helping a friend preserve their energy, by offering to clean their house or do the laundry, is greatly appreciated (I surely wouldn’t turn it down!). Or if you can, offer to employ people living with MS. Most of us are still highly contributing members of society. We are not our disease, but rather people living with one.

Different

different51

Different (adjective)
not the same as another or each other; unlike in nature, form, or quality

Some say it’s not good to look back, but then how do we learn from our past?

For the last three weeks, I’ve been walking around scratching my head wondering what I did differently last year that didn’t result in having a flare-up. Why you ask? Be thrilled that it didn’t happen you say? BUT I want to know why, so I can continue doing what I did last year to avoid one this year, and hopefully in the years to come.

I also know that it’s likely impossible to come up with anything more than anecdotal. Some things I did differently last year:

  • I started a business and am working with people I absolutely 110% respect and learn from all the time, which leads to my better well-being even during stressful times of deliverables. And I look forward to working and helping the team to be successful.
  • I avoid public transportation during commuting hours. While it’s increased expenses, I believe it’s kept me healthy and less stressed, especially since this is the worst flu season since 2009. Or it could just be that my immune system works so well it can fight H3N2 more effectively than the average person.
  • I do quite a bit of walking, but haven’t been in a gym in months due to bullet 1 above. Yes, I know, not the best, and I’m slowly working it back in, but it’s definitely different.
  • I addressed the mental health side of living with multiple sclerosis in late 2016. In my head I knew that it comes with the disease, meds to treat it, and just really living with a chronic illness. I didn’t necessarily underestimate it, but most of the time it was due to having a flare-up and the meds to treat it. Treating your brain health is no different from any other part of your body.

While I will likely never know what I did differently, if anything, I’m just so glad that I didn’t. Which isn’t to say I don’t have symptoms most days, but it’s way different from having an acute multiple sclerosis relapse, which leaves you in pain, exhausted, and wondering if you will ever recover.

Today whatever that “different” is, it’s working. Today I feel good, happy, and productive.

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