It's here! Multiple Sclerosis Awareness Month! Just like last March, I pledge to post a blog every day this month in order to raise awareness of that MonSter hiding in the closet. Multiple sclerosis is often an invisible disease that affects 2.5 million people around the world, 400,000 of which are in the United States. MS attacks the protective covering (myelin) that surrounds the nerve bundles.
MS Warriors fight every day for a space in "normal".
I hope my alphabet is helpful.
A is for attitude. Being a MS Warrior requires adopting and maintaining a healthy attitude. Learn to sort through the priorities. Not everyone is going to "get" it. We have to be positive.
B is for balance. We all have a plethora (love that word) of responsibilities on our plates, but we need to look for the proper balance, both mentally and physically.
C is for Common Sense. This is the Monster's nemesis. When in doubt, look inward. Contrary to popular rumors, common sense is NOT dead. It just gets over looked at times.
D is for diet. No, I am not referring to weight loss; although I firmly believe that we should strive to maintain a healthy weight. I am referring to logical and healthy choices.
E is for exercise. You can train to run that marathon if you like, but as long as you keep both your body and your mind limber you are in the battle. Stretch both your mind and body.
F is for friends, family, and frankincense. I don't know about you, but with my diagnosis came a downsize in my social life. In fact, I am pretty much down to hanging out with my mother and conversing with my cat. But, that is okay. This weeding out process, although at times depressing, brought me back to the really important things in life. AND I learned about frankincense. Expensive essential oil, but worth the purchase effort.
G is for getting it done. Life is short and when I was diagnosed it lost even more ground. Procrastination is one of my biggest pet peeves and with multiple sclerosis it is even more of a sore spot. DO NOT PUT OFF DESIRES for another day. Get it done.
H is for hair appointments. Okay, I know what you are thinking. "How can Lisa even think this is remotely important? I am struggling to get through the day. Who cares about my hair?" You're right. I really do not care about hair appointments any more. In fact, I have fallen into the category of old woman buns. that is not the point (As I am certain you have already ascertained.) The point is, do not forget your elf image. Make that nail appointment, get that massage, order that dress, plant that flower. Tomorrow is not guaranteed.
I is for independence. I know, I know. This is at the very top of the list of things lost to MS. Suddenly we find ourselves at the mercy of other people. That may be physical, but your mind doesn't have to relinquish it's independence. The fact that you are reading this blog is an example of independence. YOU are in control of YOU. Make your own decisions about medication, therapy, and life in general. The MonSter may thing it is the driver's seat, but you still hold the key.
J is for jersey blends. If you are like me, heat is a real enemy. that is why I select my clothing carefully. Light weight, cotton, stack- able shirts; skirts when appropriate; avoiding unnecessary buttons; loose fitting and comfortable. That' s me.
K is for keeping up with Jones's. Get rid of this philosophy RIGHT NOW. You are special. You are unique. You are a Warrior. You are a Super Star. MS does not define you.
L is for liking yourself. Riding on the closing thoughts of K, MS does NOT define you. we have no control over God's plan for us, but He has given us the means to do with His work what we can. Because you have MS (or cancer, or heart disease, or any other condition) doesn't mean that you belong in God's trash bin. I feel that He chose me for this challenge because He knew I could handle it.
M is for milk. No, not really. That was just cheap way to discuss vitamin D. Evidently multiple sclerosis occurs with a deficiency of Vitamin D, which sunlight (not cows) provides. Well, guess what? Not to start a horrible medical debate, but I grew up in the sun. As a long time lifeguard, my biggest concern should really be skin cancer, not MS. I do notice a difference in my daily symptoms when I remember to consume a vitamin D supplement, so I will not question the advice of the experts.
N is for not allowing MS to win. This easy. Refer to A-M and O-Z.
O is for on-line support groups. Look for them on Face Book. I rarely contribute. I admit it. I am a lurker. But they are there and very helpful and friendly. it is just comforting to know we are not alone.
Q is for quiet time. For reflection, for knitting, for reading, for meditation, or for prayer: This is so important. We owe it to ourselves to spend some quiet time to just breathe.
P is for politics. Yep. This is not my forte nor an active interest of mine, but when it comes to anything of importance there is always a political issue that must be considered. Last week in West Virginia, the legislature met to discuss relevant issues regarding multiple sclerosis. I had planned to go, but ended up sitting this one out. It was timely, though, with MS Awareness Month starting today and MS Awareness Week upon us. Although I no longer take any recommended MS drug, I do take two Ampyra tablets day as a walking aid. I have a forty dollar monthly copay on a drug that would normally cost over two thousand dollars a month. Without our governmental support, prescription costs would make it impossible for us to afford the medical treatment we need. So, we need to be interested in how politics affect our MS, even if it is a nasty business.
R is for reading. The more you read, the more you know. 'Nuff said.
S is for shoes. Ahhh. Every woman's nemesis. Why are we so obsessed with shoes? I could go on a complete rhetoric of my own history with shoes, but I would probably be preaching to the choir. (See chapter 7 of my book, I Have MS. What's Your Super Power?) My affection for footwear has not lessened since diagnosis, but it has taken a turn. Where I once filled my closet with ridiculous trends and fashions, I now only have shoes of comfort and close fitting support. No more flip flops, high heels, or heavy boots. My foot drop and balance issues dictate shoe choice.
T is for time for yourself. WITHOUT FEELING GUILTY. This one is tough. My husband tells me all the time that I need to take "Lisa time". typical of the clueless, right? Does that time come before or after assuring dinner is prepared, clothes are washed, dishes are put away, groceries are purchased, bills are paid, appointments are made, son's school work is checked, hogs are fed and cows are milked? Okay, maybe that's a bit excessive, but you get the point. He is right, though. We all need time just for us.
U is for UTI's. This is a big one for me, but if I force the water down I can usually keep things under control. As long as I know where the bathroom is, when that little pee trigger alerts me of an incoming flood, I will drink water all day.
V is for vanity. If you need a cane or a walker, use it; and do not worry about public image. So easy for me to say, right? Not. When I was diagnosed, my students designed beautiful walking stick that I still use to this day. it is a fashion statement and it really does get a lot of attention. It is a conversation starter. So, if you require walking assistance, think about making your own fashion statement. I am rarely seen without mine, to the point that I have informally been dubbed "the lady with the cane". (More on this later.)
W is for water. It is not just for drinking. Water aerobics and water therapy is popular activity in the treatment of MS. I have tried it and have been amply impressed. I just cannot afford to join a facility that provides the opportunity to exercise in this manner. (See letter P.)
X is for MRI's. Okay, maybe I stretched the alphabet game a bit, but isn't an MRI an x-ray? Duh. This may not be a whole lot of fun, but it is a necessary part of living with multiple sclerosis. Make sure that you request a viewing of the results when you have your annual or bi-annual MRI. This is one thing that has never been offered to me. If I am gong to endure the thirty or more minutes of lovely drilling tunes, I certainly deserve to see what is dug up.
Y is for yoga. The BEST treatment I have discovered. Restorative yoga is awesome. It doesn't require a lot of physical exertion and isn't really an expensive activity. You just need a floor, a rug or yoga mat, some loose clothes, and your breath. I will offer a list of yoga resources next week.
Z is for zzzzz's. Sleep is important in anyone's life. Years ago, doctors prescribed plenty of rest for folks exhibiting symptoms of MS. Do not exercise. Remain stationary. Blah! Phooey! Sure, know when to apply the brakes on physical activity, but never stop moving. Sleep is another issue, though. I prefer the standard eight hours, but can work well with my usual six to seven. I am an early rise, though, so my energy is usually zapped by mid afternoon. I know that and I try to schedule the less strenuous (physical and mental) portions of my day around that.
So, there you have it. My MS alphabet. What's yours?
March came in like the proverbial Lion here in Monongah, WV. Thunder, lightening, pouring rains, 70 degrees. Oh, My!
Love and Light,