A young woman I work with asked me a question today. She said, “I hope you do not mind me asking, does MS hurt you, and are you in pain?” I did not mind her asking and I tried to answer her but it made me realize that MS has symptoms that people can’t see so maybe I should wear a sign or T-shirt.
I am tired today.
Thinking a little slow or “foggy” today.
Leg weighs 100 pounds today.
Can’t work my fingers, please help me with my buttons.
Dragging my foot, just step over me if I fall down.
I feel a little “Off Balance” so I am using the cane so I won’t fall.
Maybe shirts or signs would help others understand. People know you are going to have trouble walking if you have a cast on a leg but it is hard to explain how as the day goes on, your leg gets so heavy. It really does not “hurt” to walk it is just very difficult to walk and it does begin to get annoying when you struggle to pick a leg up and fatigue other muscles. Let me try it to say how it feels another way. I start the day off and my leg feels normal. As I start walking around getting ready in the morning and make SEVERAL trips down the hall to get my kids going, it slowly starts. When I say starts I mean that it feels like ankle weights are being added in very small amounts that are just slightly noticeable at first but the longer you move with them, the heavier they feel and the more noticeable they become.
At the grocery store or larger “Super Store” I can hold on to the cart which makes it easier to move around. I now take the cart all the way to my car for the stability of the handle. I do not try to carry bags very often. Ketchup in a bag adds enough weight to alter my sense of balance and is an accident waiting to happen. Have you ever noticed how far back in the store the milk is? I know a lot of the employees at Wal-Mart and Kroger, now I make a game of speaking to as many of them as I can on my “milk” trips. I have been told that if I will call, they will have it up front for me, but that would not be nearly as much fun.
Some people joke with me about my struggles to move or walk a straight line and I appreciate the humor more than I think they can understand. At the gym where I work, I was up on a small stool refilling the paper towels. I was talking, LOVE TO TALK, with some of the ladies who were on the bikes. Jokingly they told me it was nice to see me working and not just talking. I told them they would not be laughing when I fell off the stool with my skirt on. One of them immediately spoke up and said, “We will at least pull your skirt down for you.” Three days later and I am still smiling about the humor life is bringing my way.
Small pleasures in life:
Laughter of a child
A hug from a friend
A hug from one of my Kids
A smile from a stranger
Kindness of others
Making someone smile
Fellowship of family and friends
See you on the trip to pick up the milk!
Joy
Tuesday, March 24, 2009
Thursday, March 19, 2009
Montel talks about his MS
Montel Williams was on the Opray Winfrey show this week. While I am not an Oprah follower, I made sure to watch as Montel talked about his MS. Montel has been open about his MS and very honest about his depression and suicide attempt. Dr. Oz did a great job explaining how the Myelin cover on nerves gets damaged with MS.
The nerves in our bodies are like electrical cords with the plastic insulation on them. MS starts to destroy that cover in small holes at first and then over time the holes become larger. When the protective coating is missing, the wiring, or nerves, underneath can begin to fray. The same amount of electricity in the cord will not get from the outlet in the wall to whatever appliance or machine you have plugged in. In the case of Multiple Sclerosis, whatever signal you are sending from the brain through one of your nerves does not get where it was going as fast, or completely and at times it eventually does not get where the brain is sending it at all. In reverse, some impulses in your extremities can not get back to your brain to tell you, your skin or tissue is being pinched, burned or hurt in another way.
Multiple Sclerosis attacks different people in individual ways. Montel has pain in his left foot and ankle. He commented how many people have problems with balance but he mostly has pain and depression. I have not had the “ghost” pains; Loss of balance and coordination are my enemies right now. Thankfully I have begun a medication specifically for depression that works well for MS patients. I have said it before and will say it again, since being diagnosed and treated for MS, I feel better than I have in years.
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.
After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.
I am off to find some electrical tape that can cover my nerves so I will stop having damage. My electrical tape might be in the form of laughs or smiles or the love of family & friends.
Joy
The nerves in our bodies are like electrical cords with the plastic insulation on them. MS starts to destroy that cover in small holes at first and then over time the holes become larger. When the protective coating is missing, the wiring, or nerves, underneath can begin to fray. The same amount of electricity in the cord will not get from the outlet in the wall to whatever appliance or machine you have plugged in. In the case of Multiple Sclerosis, whatever signal you are sending from the brain through one of your nerves does not get where it was going as fast, or completely and at times it eventually does not get where the brain is sending it at all. In reverse, some impulses in your extremities can not get back to your brain to tell you, your skin or tissue is being pinched, burned or hurt in another way.
Multiple Sclerosis attacks different people in individual ways. Montel has pain in his left foot and ankle. He commented how many people have problems with balance but he mostly has pain and depression. I have not had the “ghost” pains; Loss of balance and coordination are my enemies right now. Thankfully I have begun a medication specifically for depression that works well for MS patients. I have said it before and will say it again, since being diagnosed and treated for MS, I feel better than I have in years.
Montel spoke about how he will never run again. I thought about it and shed a few tears as I realized the same is true for me. The nerves in my feet and the “Fast Twitch” nerves in my legs can’t respond fast enough for me to run. I have a very funny shuffle that is a source of great laughter to my children. My kids also enjoy pointing out how Grandmommie can run faster than I can. My dances are another blog by themselves but I still have fun moving.
After a few minutes of self-pity, I realized that I did not have plans or unfulfilled dreams to run in a marathon or even a 5K race so the fact that I can’t run is probably not very high on the priority list. Maybe, way back in my mind, I thought that I would be able to run again if I got some help with Multiple Sclerosis. I realize I have made tremendous progress with my balance and ankle strength so I will be thankful for that and hang up my running shoes.
I am off to find some electrical tape that can cover my nerves so I will stop having damage. My electrical tape might be in the form of laughs or smiles or the love of family & friends.
Joy
Monday, March 16, 2009
Did I forget.........
Yes I Did.
On some days my thinking has become a little foggy. It is hard to explain but you know I am going to try anyway. I feel my reaction time is a second slower than it used to be, almost like I am in a fog. I hear someone say something and I process it in outline form.
A. I hear the words reach my ears
B. Yes, they were talking to me.
C. It takes a second longer for the words to register
D. Then another second for the whole sentence or idea to process.
E. Then I need to form my reaction.
F. I either need to say something or get moving.
These are all steps that seem to take an eternity longer than they use to. We all know that feeling of someone else getting the answer or coming up with an idea a fraction of a second quicker than we do. On some days I feel that everyone is moving and reacting in a time warp a few seconds ahead of me.
This does not happen all the time but when it does I do it up right. The days are few and far between for now. I have notes written all over the place. But I need to find some way to manage everything. Current methods are not working.
I have a beautiful and kind sister who has always taken care of everyone else ahead of herself. She always makes sure I remember to mail everyone else’s Birthday cards, even before my MS. Well, she did not remind me of her own birthday today and while cleaning out my car on Sunday, I found her cards that I went to the trouble to put extra stamps on because they were a little heavy. Extra stamps do not help if you forget to mail them.
Hurting someone who goes out of her way to help me made me realize I need some help sometimes remembering small details. My calendar is not enough. I am going to complete two websites tomorrow, www.savysugar.com and www.famundo.com. Both of these have tools and techniques for staying organized and not forgetting.
To my friends, I am sorry if I have forgotten anything, no excuses please remind me.
To my sister: I Love You and am very ashamed that I could not remember to do the one thing you help me with the rest of the year. You have put up with me for 43 years and I hope I will not forget to mail the card again in the next 43 years.
WOW, we are both 43. We are the same age for 2 months out of every year. Maybe it is not the Multiple Sclerosis that is making me forget maybe I am just getting old at 43. Sorry, I forgot your 43 too so that would make us both OLD. Lots of Love!
Joy
On some days my thinking has become a little foggy. It is hard to explain but you know I am going to try anyway. I feel my reaction time is a second slower than it used to be, almost like I am in a fog. I hear someone say something and I process it in outline form.
A. I hear the words reach my ears
B. Yes, they were talking to me.
C. It takes a second longer for the words to register
D. Then another second for the whole sentence or idea to process.
E. Then I need to form my reaction.
F. I either need to say something or get moving.
These are all steps that seem to take an eternity longer than they use to. We all know that feeling of someone else getting the answer or coming up with an idea a fraction of a second quicker than we do. On some days I feel that everyone is moving and reacting in a time warp a few seconds ahead of me.
This does not happen all the time but when it does I do it up right. The days are few and far between for now. I have notes written all over the place. But I need to find some way to manage everything. Current methods are not working.
I have a beautiful and kind sister who has always taken care of everyone else ahead of herself. She always makes sure I remember to mail everyone else’s Birthday cards, even before my MS. Well, she did not remind me of her own birthday today and while cleaning out my car on Sunday, I found her cards that I went to the trouble to put extra stamps on because they were a little heavy. Extra stamps do not help if you forget to mail them.
Hurting someone who goes out of her way to help me made me realize I need some help sometimes remembering small details. My calendar is not enough. I am going to complete two websites tomorrow, www.savysugar.com and www.famundo.com. Both of these have tools and techniques for staying organized and not forgetting.
To my friends, I am sorry if I have forgotten anything, no excuses please remind me.
To my sister: I Love You and am very ashamed that I could not remember to do the one thing you help me with the rest of the year. You have put up with me for 43 years and I hope I will not forget to mail the card again in the next 43 years.
WOW, we are both 43. We are the same age for 2 months out of every year. Maybe it is not the Multiple Sclerosis that is making me forget maybe I am just getting old at 43. Sorry, I forgot your 43 too so that would make us both OLD. Lots of Love!
Joy
Saturday, March 14, 2009
Do you know where you are going?
Hello friends:
I was cleaning out emails today and was looking for an email I had saved a while back. I did not find it but did reread the one below. I often read someting that reminds me that LIFE IS GOOD RIGHT WHERE I AM AT!
Joy
*****************************************************
Where Are You Going?
Author: unknown
A boat docked in a tiny Mexican village. An American tourist complimented the Mexican fisherman on the quality of his fish and asked how long it took him to catch them.
"Not very long," answered the Mexican. "But then, why didn't you stay out longer and catch more?" asked the American.
The Mexican explained that his small catch was sufficient to meet his needs and those of his family. The American asked, "But what do you do with the rest of your time?"
"I sleep late, fish a little, play with my children, and take a siesta with my wife. In the evenings, I go into the village to see my friends, play the guitar, and sing a few songs... I have a full life."
The American interrupted, "I have an MBA from Harvard, and I can help you! You should start by fishing longer every day. You can then sell the extra fish you catch. With the extra revenue, you can buy a bigger boat."
"And after that?" asked the Mexican.
"With the extra money the larger boat will bring, you can buy a second one and a third one and so on until you have an entire fleet of trawlers. Instead of selling your fish to a middle man, you can then negotiate directly with the processing plants and maybe even open your own plant. You can then leave this little village and move to Mexico City, Los Angeles, or even New York City! From there you can direct your huge new enterprise."
"How long would that take?" asked the Mexican.
"Twenty, perhaps twenty-five years," replied the American.
"And after that?"
"Afterwards? Well my Friend, That's when it gets really interesting," answered the American, laughing. "When your business gets really big, you can start selling stocks and make millions!"
"Millions? Really? And after that?" said the Mexican.
"After that you'll be able to retire, live in a tiny village near the coast, sleep late, play with your children, catch a few fish, take a siesta with your wife and spend your evenings doing what you like and enjoying your friends."
And the moral is:
Know where you're going in life...you may already be there.
I was cleaning out emails today and was looking for an email I had saved a while back. I did not find it but did reread the one below. I often read someting that reminds me that LIFE IS GOOD RIGHT WHERE I AM AT!
Joy
*****************************************************
Where Are You Going?
Author: unknown
A boat docked in a tiny Mexican village. An American tourist complimented the Mexican fisherman on the quality of his fish and asked how long it took him to catch them.
"Not very long," answered the Mexican. "But then, why didn't you stay out longer and catch more?" asked the American.
The Mexican explained that his small catch was sufficient to meet his needs and those of his family. The American asked, "But what do you do with the rest of your time?"
"I sleep late, fish a little, play with my children, and take a siesta with my wife. In the evenings, I go into the village to see my friends, play the guitar, and sing a few songs... I have a full life."
The American interrupted, "I have an MBA from Harvard, and I can help you! You should start by fishing longer every day. You can then sell the extra fish you catch. With the extra revenue, you can buy a bigger boat."
"And after that?" asked the Mexican.
"With the extra money the larger boat will bring, you can buy a second one and a third one and so on until you have an entire fleet of trawlers. Instead of selling your fish to a middle man, you can then negotiate directly with the processing plants and maybe even open your own plant. You can then leave this little village and move to Mexico City, Los Angeles, or even New York City! From there you can direct your huge new enterprise."
"How long would that take?" asked the Mexican.
"Twenty, perhaps twenty-five years," replied the American.
"And after that?"
"Afterwards? Well my Friend, That's when it gets really interesting," answered the American, laughing. "When your business gets really big, you can start selling stocks and make millions!"
"Millions? Really? And after that?" said the Mexican.
"After that you'll be able to retire, live in a tiny village near the coast, sleep late, play with your children, catch a few fish, take a siesta with your wife and spend your evenings doing what you like and enjoying your friends."
And the moral is:
Know where you're going in life...you may already be there.
Tuesday, March 10, 2009
Why I write:
I have folders full of scrap pieces of paper, napkins and notebooks with lots of stories written down. Apparently this is personal therapy. Very few people have ever read my writing. It is a side of myself that scares me to share with other people. The possibilities are endless….. What if they do not like it? What if they think I am crazy? Who knows if one can follow the intended train of thought? Is it just jiber-jaber? AND THE WORST ----- what if they laugh at me? I truly am not a paranoid person or one that has little or no self confidence. My writing, again, is personal and since I love to do it I want others to like it as well.
My sister reads my blogs before I post them and she is a great sounding board. She is also a much better speller than I am. This is probably the first time since high school that she has read much of what I have written. She encourages me to write so I can put emotions on paper and at times get rid of some anger or other feelings I need to let go of. I have often written letters that I never mailed or have written emails and never pushed the send button (a good thing I should say for a number of them which were written from anger and not level headedness). In the case of emails, I have finally gotten smart and do not type in the To… section for fear that I might accidently hit send.
Therapy??????????????????? Yes I guess it is therapy. I just remember that overwhelming feeling of the quicksand when I was struggling with the MS diagnosis. I can truly say that I hope others never have to feel that sinking feeling.
Thanks for letting me share my gauntlet of emotions with you. I may one day let you read Dear Dad, My Sisters Closet, Memories of Mom, or other snippets that are waiting to be read. This therapy is pretty cheap compared to other methods out there. (Not that I am against other methods)……
Joy
My sister reads my blogs before I post them and she is a great sounding board. She is also a much better speller than I am. This is probably the first time since high school that she has read much of what I have written. She encourages me to write so I can put emotions on paper and at times get rid of some anger or other feelings I need to let go of. I have often written letters that I never mailed or have written emails and never pushed the send button (a good thing I should say for a number of them which were written from anger and not level headedness). In the case of emails, I have finally gotten smart and do not type in the To… section for fear that I might accidently hit send.
Therapy??????????????????? Yes I guess it is therapy. I just remember that overwhelming feeling of the quicksand when I was struggling with the MS diagnosis. I can truly say that I hope others never have to feel that sinking feeling.
Thanks for letting me share my gauntlet of emotions with you. I may one day let you read Dear Dad, My Sisters Closet, Memories of Mom, or other snippets that are waiting to be read. This therapy is pretty cheap compared to other methods out there. (Not that I am against other methods)……
Joy
Sunday, March 8, 2009
I have a new Job.
Sorry that I have not written much lately but I got a job. I have not worked full time in 13 years or part-time in 6 years. Needless to say this has kicked me in the backside but for all the right reasons.
I happened to find the job by accident. It is at the gym where I have been working out at for the last two and a half years. They have all watched me struggle with my walking and then revamping my training routines once I was diagnosed with MS. I did not think that working again would be in my future since the majority of employers would view me as a liability. I go to work after I get the kids off to school in the morning and get off in enough time to work out and then get the kids picked up and taken to various ball practices. The best part, I firmly believe that continuing to stay fit will help prevent MS from having the ability to “do what it wants” with my body. Now I can share the benefits of working out with others.
The work is interesting and I like the new challenges that this job will give me. I will continually get to use my brain and work to negate any cognitive problems. Plus, I get to talk to adults instead of the kids or my dog. I was a little apprehensive on the first day, worrying if this job would be too much for me with my newfound MS. My boss treats me like everyone else and for that I am appreciative and will do everything not to disappoint him.
I am sleeping at night better than I was and I am hoping that my organizational skills with meal planning will become better. There is a sense of pride in being able to say that I got a job. Once again, I will say that MS is not going to stop me from having a normal life I am a MS THRIVER not just a MS Survivor. Now I can say that I am somewhat embarrassed that I had doubts on the first day of my new job. Now I need to make sure that the doubt does not get the better of me again.
I now enjoy my weekends even more as they have become more ‘sacred’ in a sense. Come see me at the gym, I am the one singing, “Nine to Five” and dancing behind the front desk.
Joy
I happened to find the job by accident. It is at the gym where I have been working out at for the last two and a half years. They have all watched me struggle with my walking and then revamping my training routines once I was diagnosed with MS. I did not think that working again would be in my future since the majority of employers would view me as a liability. I go to work after I get the kids off to school in the morning and get off in enough time to work out and then get the kids picked up and taken to various ball practices. The best part, I firmly believe that continuing to stay fit will help prevent MS from having the ability to “do what it wants” with my body. Now I can share the benefits of working out with others.
The work is interesting and I like the new challenges that this job will give me. I will continually get to use my brain and work to negate any cognitive problems. Plus, I get to talk to adults instead of the kids or my dog. I was a little apprehensive on the first day, worrying if this job would be too much for me with my newfound MS. My boss treats me like everyone else and for that I am appreciative and will do everything not to disappoint him.
I am sleeping at night better than I was and I am hoping that my organizational skills with meal planning will become better. There is a sense of pride in being able to say that I got a job. Once again, I will say that MS is not going to stop me from having a normal life I am a MS THRIVER not just a MS Survivor. Now I can say that I am somewhat embarrassed that I had doubts on the first day of my new job. Now I need to make sure that the doubt does not get the better of me again.
I now enjoy my weekends even more as they have become more ‘sacred’ in a sense. Come see me at the gym, I am the one singing, “Nine to Five” and dancing behind the front desk.
Joy
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