I have been diagnosed with MS since 27, and have spent a long time hiding it from people. One because no one understands it, they say you are faking the many symptoms, or they just don’t want to hear that someone they know may not be able to walk or talk in the future. I have been rapidly deteriorating over the last few years, slowly, bit by bit, yet I fight daily to make it not seem as if it is there. I ignore the pain and I sit through the tremors with my coffee in the morning. I suffer from extreme fatigue and balance problems, bladder problems, dizziness, depression, cognitive function, extreme constant pain in my entire body, emotional issues, vision issues, speech issues, hearing issues, extreme migraines, the list goes on for miles.
My ex used to get scared to death because I would forget very small words to common things, while being able to know the big word for the same thing. It drove him nuts that one minute I would be full of energy and the next unable to move. He was angered, feeling like I was faking. Many people with MS deal with this. I sometimes suffer from confusion, and for a person with a high IQ, it’s devastating. Oddly I function well under high stress but at the same time that same stress is what puts me under. I spend a lot of time fearing those I do business with will think I can’t do my job, that I will have an episode in public or worse. I spend lots of time ignoring that there is a chance I won’t walk or talk one day, but then again…that could not be the case at all. I stay around people, and music….music seems to make me feel better. I adore it. It’s like it works the receptors in my brain that are malfunctioned. I was at a music business Christmas party last year, and almost had a horridly embarrassing episode, thank goodness for my friend Paul Diaz from Tree Sound saving me from humiliation, as well as at a festival I threw this summer, where I had to run from the sound booth and have a friend cover the stage as I went into a seizure backstage right in front of the acts.
A little to know about MS:
Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. 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, producing the variety of symptoms that can occur. In rare cases MS is so malignantly progressive it is terminal, but most people with MS have a normal or near-normal life expectancy. Severe MS can shorten life. There is no cure at this time, and most people choosing to be medicated are highly medicated. There are ways to improve quality of life such as stem cell therapy at QC Kinetix TX.
As for myself, I choose to not be medicated. I don’t want to spend my life on one pill after another. It’s a waste of life. I stay busy, exercise, do yoga, try to eat ok, etc. The only thing that I can’t avoid in life is stress, very high issues with those of us with MS..it seems to make it worse. I don’t have massive attacks a lot, here and there embarrass myself forgetting words or getting sick all the time because of the immune system attacks. Basically my body is slowly destroying itself little by little. I no longer can play guitar or piano, and percussion is getting there. I dread the day when I can’t write or sing a song…something dear to me. So far though I am doing fine. I have these attacks that put me under, and suffer from exhaustion and pain. I am blessed because I can walk and talk..some of my friends can’t. I don’t pose this note for pitty, I try to avoid that. I just wish more artists and people would speak out.
I ask that all of you find an MS charity and give to it. Not enough is done for us. You can read more here:
I remember raising money for MS in college as the philanthropy chair in the Greek World. I know so many people that have been affected and I always think about how easy life is in comparison to those who suffer with MS.
Wishes of Health and good days to everyone during the Holiday Season and forever.
Worries should be limited to what to wear and keeping glasses from being empty…only.
I have received many many letters since writing this and will be sharing them if the writers allow me to.
You are brave to share this.
I got this from someone earlier:
Jackie Landaiche England December 20 at 3:11pm Report
After seeing your note on Christopher’s page, I just had to reach out to you and say hello. I was diagnosed with MS about 2 years ago after, what seemed to me, a sudden onset of problems/attack…quite interferring and unwelcomed MS is, you know all to well.
Anyways, so far I am one of the lucky ones, in that MS pretty much leaves me alone, except for the tiredness, occasional stiff muscles, and numb fingers and toes when it’s cold, etc.
I also do not tell many about the MS because, as you say, no one understands and they think you are faking. Mainly though, I don’t say anything because i know there are many who have it far worse than I…so I feel like I don’t deserve any pity, why should I? But I do feel sorry for myself from time to time.
Again, I am sorry for “butting in”, but your note touched me truly. It grabbed my heart. I really don’t know anyone besides myself with this disease…a disease I like to call a “lonely disease”. If you ever need someone who understands, someone who you can talk to…look me up!
Have a Glorious Holiday, Kimberly!
Wow, since writing it and I also put it on my column, I have had many letters. It’s good seeing that I am not alone out there like it sometimes does. Mine isn’t too too bad, though I have noticed faster deterioration as of late. Do you mind If I share your letter on my column? I really want people to know that they have friends out there suffering like this.
Jackie Landaiche England December 20 at 3:27pm Report
I just think that many just don’t like to talk about it. So that’s why it seems like we are by ourselves.
I’d be honored if you would include my letter 😉 , Kimberly!
This is the best description of Multiple Sclerosis I have ever read. Not much affects me these days, but your words did. I love your vibrant choice of words in all your writings.
Those of us who fight neurological battles must stick together. I am inspired by your story to keep going. I am also honored to be a part of your walk ms team.