Tuesday, July 30, 2013

Stay Hydrated and Make Memories

 Dan and Jennifer are friends of mine that I met in the “blogosphere”. They are a beautiful couple, both living with MS and both writing about their experience. Besides their own blog, they are now writing for healthline.com.  This is their most recent post which very accurately describes what part of living with MS is like for many of us. I hope that you enjoy it.


Guest post by Dan and Jennifer Digmann

Stay Hydrated and Make Memories

I have so much to say, but it is so difficult and frustrating to get my words out.6

I have the typing software Dragon Natually Speaking which, in theory, is supposed to transcribe my spoken word into text on the screen, but the program only adds to my frustration. When I’m alone, it is hard for me to put on my Dragon headset. And when I finally get the headset over my humongous melon, it understands me 60 percent of the time.

I patiently say into the system’s microphone, “Correct that” 10 or 15 times before I give up and instead focus my energy on a game of Scrabble—my favorite. To play, all I need is the game, a mouse, and my intellect. Then it is game on! But I always promise myself that I’ll write some other day.

My Multiple Sclerosis is being pretty nice to me today, and my right-index-finger typing method is working quite well, so here goes…

As is the norm for my husband, Dan, and me, we’ve been pretty busy. I truly believe that we stay so busy in some sort of feeble attempt to stay ahead of our disease. Yes, Dan also is living with Multiple Sclerosis.

Slow down and our MS will catch up with us. But so far so good, we’ve been able to outrun it. At least I think we have, and really, do any of us know what this disease has in store?

Our battle to outrun MS involves our constant struggle to make every moment memorable and to have as many awesome moments as possible. When the opportunity presented itself to see the rock group Train in concert, we jumped at the chance. Sure it meant a longish drive to the concert and a very late night, but those facts were not going to hold us back.

I mean, c’mon it was Train – Save me, San Francisco; Drops of Jupiter; California 37; Meet Virginia. Yes, that Train – one of our favorites! Did I mention that along with Train, we’d also be seeing Gavin DeGraw and The Script? Sounds like quite a magical, musical extravaganza doesn’t it?

So when Michigan was gripped in the serious 90+ degree heat wave that was making our state and the rest country miserable, we didn’t even think twice about sitting outside at DTE, Detroit’s outdoor amphitheatre. Certainly, a little heat wouldn’t be that bad.

Our MS and unbearable heat … what’s the worst that could happen?

After living with this disease for 15 years, I should know better than to ask that innocent-enough sounding question. And after a decade and a half, you’d think I would have learned to:

A. Respect Mother Nature
and
B. How to stay hydrated

But isn’t water the enemy to those of us dealing with MS and a Neurogenic bladder?  I soon learned that while water may seem like an enemy, it is nothing compared to dehydration!

After sitting outside for a little while before the concert started, I was a little warm, or so I thought. Dan asked a few times if I was okay and did I want something cool to drink?

After kindly answering, “No thanks,” several times, I was becoming increasingly hot – both literally and figuratively. But my difficulty speaking at an audible level and mild confusion convinced me I better take Dan up on his offer for a cold beverage. And that frozen lemonade he bought me was just about the best drink ever.

Brain freeze notwithstanding, it seriously was the best drink EVER! Not only was it cold but it was sweet and refreshing. Almost immediately, my voice was stronger and my mood became much happier. I nursed that $5 frozen lemonade throughout the rest of the concert and it made my evening so much more comfortable; but it also made Dan’s evening more enjoyable because he did not have to worry about his wife’s probable heat stroke.  

We saw a fantastic concert and had a great time. And isn’t that what life should be about? MS or not, we made a memory and that’s pretty awesome.

Plus I learned something – the lesson being that even though I think I know most all there is to know about my Multiple Sclerosis, I can benefit from a new-to-me old common sense idea every so often.

As the dog days of summer approach, I hope you manage to stay cool and hydrated!

And F.Y.I. according to news@kake.com, the phrase “dog days of summer” dates back to the olden days and has to do with the star Sirius, the brightest star in the heavens, which is also known as the Dog Star.

Sirius was nicknamed the “Dog Star” by the ancient Egyptians in honor of a god named Osirus, whose head resembled that of a dog. For around 20 days beginning in late July, Sirius actually rises and sets with the sun, so the Egyptians and Romans put two and two together and concluded that Sirius added its heat to the sun and made things extra hot… hence, the name “dog days of summer.”



http://www.healthline.com/health-slideshow/multiple-sclerosis-stages

Friday, March 8, 2013

Flexibility


I love to stretch.  I love to sit on the bed, fold myself in half while holding my toes, and strive to touch my chest to my knees. And then when I have reached as far as I can, I love it when somebody gently pushes on my back and causes me to stretch even further. I've been told that I am “freakishly limber.” Maybe so. What I am sure of is that I enjoy stretching and being physically flexible.
I like to think of myself as being flexible in other ways too. Being flexible in my personal life and relationships with others is even more important.
The dictionary defines flexible as “able to bend without breaking” and “able to adapt to new situations.” I think that these are important life skills. One never knows what life will bring you and the ability to adapt or adjust may be the difference between living a happy life or not.
How does someone become more flexible? Stretching. Taking yoga classes. Or, most importantly, “learning to bend without breaking.”
I know that at times I can be stubborn, less than “flexible.” But if I take a minute, breathe in and breathe out, then most often I will be more flexible. I also often ask myself the question “what difference will this make in a day, week, month, or year?” If it won't matter or won't matter much, it is easier to be more flexible.
Being in a wheelchair requires me to be more flexible. Since I depend on others for so many things, I have to consider their needs when I am asking for help with mine. I don't mind that and perhaps I have become more flexible because of it.
I am not suggesting that you get in a wheelchair and become dependent on others for your needs in order to become more flexible. What I am saying is that learning to consider the needs of others may help in becoming more flexible.
I don't know if one can learn to bend all the ways that I do. What I do know is that we can all do better at taking a breath, considering the needs of others and becoming more flexible.



 Participate. Make a difference. Live a life that matters.

Tuesday, January 22, 2013

A high tolerance for pain.


One day, I was working with an acupuncturist and she was burning incense on the palm of my hand. She told me to let her know when it gets too hot and she would remove it, but to try and keep it there for as long as I could. Well, I kept it there as long as I could letting the incense burn all the way through to the skin. She asked why I waited so long? She had said to keep it there for as long as I could and that's what I did! I kept it there much longer than a normal human being would have done. Why? Because I have a high tolerance for pain.

There are different kinds of pains that I get from living with MS, and some are worse than others. They can range from aches to extreme itching to deep nerve pain. I know that I can count on experiencing at least a couple of them every day. I also know that when I'm feeling pain, that it will go away. For me, I think that knowing it will go away is a big part of tolerating pain.

Don't get me wrong. I feel the pain. I grit my teeth's and sometimes writhe in pain. Occasionally I will let out a few expletives. So it is not that I do not feel "the nail going through my foot”. I do. I am just able to tolerate it. Again, knowing that it will go away is a big part of how I tolerate pain.

Pain can be more than physical. There also emotional pains.  Pains that one experiences when they or someone close to them are diagnosed with an illness. Pains that are felt when a family member or friend or someone important to them passes away. I seem to have a high tolerance for these pains too. The questions are how and why.

The answer for emotional pain is partially the same as it is for physical pain. I know that it will go away. “Time heals all wounds”. The cliché is always true, but there are other ways that I deal with the emotional pain.  What seems to work best for me is gratitude and perspective.

I was very close with my mother. She was an extraordinarily active and vital woman who spent her life taking care of other people. She took care of her mother, her husband, and did everything she could to take care of our family too. But it did not stop with family. Whenever she saw or met someone that she thought she could help, she did. She also died at the age of 68.

Dozens of people responded to her death by saying “she was so young”. My response was that 68 is not young. It is just not a particularly long life. In fact, we were lucky to have had her for as long as we did.

She was not young. It is just that her life was not long enough. Her life wouldn't have been long enough even if she lived to be 120 years old. For me, the best way to accept her passing was to be grateful for all the years that I had with her.

The best way to deal with pain, be it physical or emotional, is gratitude. Grateful in knowing that the physical pain will go away. Grateful in knowing person for as long as I did.

Participate. Make a difference. Live a life that matters.