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Awareness Spotlight - MS (Multiple Sclerosis)
Multiple Sclerosis (MS) in real life:
I am one of the sisters that make up Lula belle, and I have MS. As you can imagine, this diagnosis has made me a different person than I thought I was. It has made me see the world differently, and I think it has made me more compassionate towards others. We all have our "thing" that we are challenged with, and this is mine.
I've found that MS is such a difficult disease to explain to others. Yes – there are some facts, but so much is unknown, and the symptoms are different for everyone. Little is seen on the outside... except for the obvious... like being in a wheelchair. There is so much more to it.
I met an amazing person, Jamie, whose life is so similar to mine... I read her blog on Facebook and just had to contact her. It turns out we are both from the same area, we went to the same college, married men with the same name, both have 2 children, and both our sons have the same name. Oh – and she also has MS. But she also has a gift of writing. I've included some excerpts (in quotes) from one of her blogs... I encourage you to read it... http://www.mstripper.typepad.com
There are so many symptoms that a person with MS can experience... weakness, numbness, pain, blindness, memory loss, paralysis, incontinence so many more... A common symptom is FATIGUE. This is a tough one for people to comprehend:
"Crushing Fatigue. How I wish I could bottle this up and give to my friends. I mean it more in an "Eww, taste this milk! Does this taste funny to you?" kind of way. Just so people would get what it feels like to have to push through something this extreme. Fatigue. That word denotes sleep, peaceful transitioning from the world of awake to lovely little dimly lit dream worlds. It is too pretty a word for this. I like coupling it with the word CRUSHING. It fits. Changes it from lovely little dream world to more of a body slam By Hulk Hogan. Yes that is more fitting."
People talk about how lucky I am because there I treatments now for MS. Maybe lucky, but not pleasant. Almost all treatments involve injecting yourself daily. There is still no cure:
"There are many approaches to treating this disease and there is a consequence for every one. Even the holistic approach has a consequence--time can have a hefty price if you are in a race against it. It takes so much time to let the holistic approach take hold and take over, and some people, in their minds, simply don't have time. Time could mean a wheelchair... or paraplegia. Some of the injections are intra-muscular and painful. Other treatments have debilitating flu-like symptoms that go away right in time for your next injection... sweet... and crippling depression. If you have to take medications to fight the fatigue you can risk an addiction to sedatives. Your hair will fall out. There is no right choice. There is no easy choice. This is a very intimate disease. I am not my sister's keeper."
This disease causes me to change so many things in my life... things I never thought I'd stop doing... like working. But becoming "disabled" or "handicapped" isn't always obvious to others:
"... others eyeing me, whispering about the seemingly healthy chick that is parking in the last handicap space. It's about me and my own hang-ups. I had a preconceived notion of what sickness looked like before I got this disease. The handicap placard caper is about me reconfiguring-re-shifting the lines of my own preconceived notions of sickness and self. I had an idea of what "sick" was and it wasn't me. And now it is. And that is ok. Sickness needs a new face, a fresh face. An empowered face. A body that falls and crawls and sometimes doesn't feel like getting up, but does. A wife. A mother. A teacher and a runner. A health nut. Just a nut. A daily injector and everything else under the sun that is good and just and sometimes even sick."
MS is just another example of the challenges people face every day. As you read Lula belle's spotlights, please try to remember that not everything is what is seems on the outside. Many people need patience, kindness, compassion, and help – even if you can't see it.
Multiple Sclerosis (MS) Definition: MS is a nerve disorder caused by destruction of the insulating layer surrounding neurons in the brain and spinal cord. This insulation, called myelin, helps electrical signals pass quickly and smoothly between the brain and the rest of the body. When the myelin is destroyed, nerve messages are sent more slowly and less efficiently. Patches of scar tissue, called plaques, form over the affected areas, further disrupting nerve communication. The symptoms of MS occur when the brain and spinal cord nerves no longer communicate properly with other parts of the body. MS causes a wide variety of symptoms and can affect vision, balance, strength, sensation, coordination, and bodily functions.
Thank you for reading and for supporting causes important to you.
For additional information, please email us at sisters@lula-belle.com.
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