I was pondering the other day (as I frequently do) about sleep. I know that I have MS Fatigue...there is no doubt about that! To be honest, I don't do all that I should to combat it...there is no doubt about that either! But, when my neurologist told me that I should be getting 10 to 12 hours of sleep per night....I started laughing! What?! Tell me what working parent in today's world is able to get 10 to 12 hours of sleep per night...ha!
On top of the impossible number of hours of sleep I'm supposed to get....I need to watch what I eat, exercise, stop smoking, conserve energy throughout the day and reduce my stress...again I say...ha! I am absolutely not opposed to doing all of these things, but when you are a single mother of twins with no support and have to work full time (at a pretty high stress job none the less)....kinda puts a kink into doing what is necessary to reduce the MS fatigue problem and all that is needed to control it...hmmm!
Since I am still newly diagnosed and am "learning the ropes"....I continually ponder these things. The easiest thing to do was to work on the sleep thing first and slowly incorporate the others. Right from the start it was very clear that not getting enough sleep would make everything difficult. I knew that I needed to go to bed at a "decent hour" and not get up as early in the mornings. However, as I continued my journey and fell into a spell of depression, sleep became a "safe haven". I didn't have to deal with anything and could basically hide. A few months into being depressed about my new diagnosis, I realized that this wasn't going to work. So, I began my attempt to figure out the best method of getting enough sleep while still trying to work full time and be a mom. I began searching for advise from friends, doctors and books trying to figure out what to do. Unfortunately, I couldn't bring myself to go to bed earlier than 10 PM because it was too soon after the kiddos went to sleep and I needed some "me time". I had stopped waking up at 4 AM to get ready for work and started getting up at 5:30 AM instead....removing time for makeup and some prep time for the day. I fell into a routine of get up at 5:30 AM and making it through my work day and coming home completely wiped so I would end up laying down for 2-3 hours and wake up in time to send the kiddos off to bed. Then I would stay up for about an hour or two and go back to sleep for another 6.5 hours. With this routine, I was averaging about 8-9.5 hours of sleep most of the time and it seemed to help. But after about 6 months of this routine, I started feeling horrible because I was basically missing out on any time with my kiddos and I just couldn't stand that! So....in April, I talked to my neurologist about a medicine that I had read about on webmd.com (love that site!!!) called Provigil. Apparently, it was something used to combat MS Fatigue. I thought...if this medicine could help me get through the day and not have to take a nap...what an awesome feat that would be! My neurologist gave me some samples and told me to try it and let him know how it goes. I started taking the medicine the day after my appointment and within a few days, I noticed that I was still feeling tired....BUT...I wasn't feeling exhausted....YAY!!! I continued on the medication for a full month and it did help...not as much as I had hoped, but I think that was because we started out with only 1/2 a pill to see what it would do. I think a full pill will be better (especially now that summer is coming) and have every plan to try it (with neurologist's approval of course).
Okay, so what does this rambling have to do with my question?! Everything :)
Once I realized that the medicine helped most days....I realized that I had also been using sleep as an excuse to get out of everything from events to laundry. I think I was angry with myself for two days before I realized that I can't beat myself up over it. I thought back and realized that things just aren't the same for me anymore. I would make grand attempts every Sunday (not Saturday because that is my dedicated sloth day) to do alot of things around our home and would wipe myself out trying to do too much (which used to not be too much) and therefore wasted energy I was supposed to be conserving to face another week. My point is that....sleep is an absolute necessity for people with MS (especially those w/ MS fatigue), but I hope to help others realize not to get trapped in a routine of using it as an excuse and truly evaluate if you need to skip something for the right reason....like I learned the hard way :)
Until next time....
~Hope~
Tuesday, June 9, 2009
Sunday, June 7, 2009
A sunny day...or is it?
Most people look at the weather forecast or look out their window and think "How wonderful, it's going to be a nice, warm, sunny day!"
I, however, check the weather forecast and look out my window and think "Great, another hot, sunny day with no cloud cover?!"
Why do I sound so gloomy about a weather forecast of 83 and mostly sunny?! Because I have MS and these type of days are just plain aweful! I want to stay inside my nice cool apartment and not even attempt to face the sun. I know that there is a lot of information out there about how the sun is soooo good for your health with the Vitamin D that it gives you, but when it makes you tired, sticky (when it's humid) and dizzy....not so exciting anymore! I'd rather get my Vitamin D from a pill than go outside and face that!
As I was driving in the heat yesterday morning (and yes, it was already hot by 10 AM), I began to ponder some questions (since I'm a curious person) - Do other people with MS hate the summer as much as I do? Do other people with MS just want to hide from the sun like I do? What is the best climate and/or place to live when you have MS?
When I arrived back home, I sat down at my computer and started a search for the answer to the last question, what his the best climate and/or place to live when you have MS? - I did not find what I was hoping for....the answer. What I did find was several places where people had discussed this question and what I found was.....the statement that there isn't one exact place to live that is going to keep your MS in check. For some, warmer environments seem to help (Arizona being one that was mentioned a couple times). For others, areas like the Pacific Northwest seem to be better. Another person mentioned that they felt the best place to live regardless of your ailment would be San Diego, CA. What I found was that, as with everything associated with MS, it all depends on the person that has MS and what their symptoms are.
For me, I currently live in Colorado and am not sure it is the best place for me to live. The reason I feel this way is because there is very little Spring and Fall, but rather, many months of Winter and Summer. I recall living in Washington state as a child and have fond memories of the rainy, cool weather. Now that I am an adult, I would love to move back to Washington state simply based on those fond memories, but as a friend pointed out, there is no guarantee that would be better for my health. So....after thinking about what this friend said, I have decided that I would like to go visit Washington state on a vacation to sort of "test" the climate and see if it is, in fact, better for me than Colorado.
For now, I am staying right here in Colorado and not looking forward to this summer, but will make the best of it.
Until next time....
~Hope~
I, however, check the weather forecast and look out my window and think "Great, another hot, sunny day with no cloud cover?!"
Why do I sound so gloomy about a weather forecast of 83 and mostly sunny?! Because I have MS and these type of days are just plain aweful! I want to stay inside my nice cool apartment and not even attempt to face the sun. I know that there is a lot of information out there about how the sun is soooo good for your health with the Vitamin D that it gives you, but when it makes you tired, sticky (when it's humid) and dizzy....not so exciting anymore! I'd rather get my Vitamin D from a pill than go outside and face that!
As I was driving in the heat yesterday morning (and yes, it was already hot by 10 AM), I began to ponder some questions (since I'm a curious person) - Do other people with MS hate the summer as much as I do? Do other people with MS just want to hide from the sun like I do? What is the best climate and/or place to live when you have MS?
When I arrived back home, I sat down at my computer and started a search for the answer to the last question, what his the best climate and/or place to live when you have MS? - I did not find what I was hoping for....the answer. What I did find was several places where people had discussed this question and what I found was.....the statement that there isn't one exact place to live that is going to keep your MS in check. For some, warmer environments seem to help (Arizona being one that was mentioned a couple times). For others, areas like the Pacific Northwest seem to be better. Another person mentioned that they felt the best place to live regardless of your ailment would be San Diego, CA. What I found was that, as with everything associated with MS, it all depends on the person that has MS and what their symptoms are.
For me, I currently live in Colorado and am not sure it is the best place for me to live. The reason I feel this way is because there is very little Spring and Fall, but rather, many months of Winter and Summer. I recall living in Washington state as a child and have fond memories of the rainy, cool weather. Now that I am an adult, I would love to move back to Washington state simply based on those fond memories, but as a friend pointed out, there is no guarantee that would be better for my health. So....after thinking about what this friend said, I have decided that I would like to go visit Washington state on a vacation to sort of "test" the climate and see if it is, in fact, better for me than Colorado.
For now, I am staying right here in Colorado and not looking forward to this summer, but will make the best of it.
Until next time....
~Hope~
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