MS is a disease. It's a distraction. Multiple Sclerosis. I get it. Many scars. But what a name for those who often lose their ability to speak or enunciate. That is so annoying! I can see the word but can't get the lips to say it right. and then try to say Multiple Sclerosis. Heck. And MS? nobody even knows what it is. I didn't. Unless you know someone with the disease it's difficult to remember all of these many idiosyncratic diseases.
And here's for distraction. I noticed with my MS is that sometimes I absolutely need time for me. Maybe that's why I never really considered myself to have children. I know I need time for me to be healthy. Sometimes my housemates don't quite get that. And I'm sure I'm just as bad in reverse. Sometimes though, I just want some quiet time to write and chill. But then, be careful for what you want, because quiet time around here could mean that something catestrophic happened. And I don't want that.
I'm want what I have right now. How often do you get to say that?
content. desire for a bit more. pleased with the past. embarrassed at times. fun most of time. god bless~
Caroline Craven - Certified Life Coach, MS Advocate, Motivational Speaker, Writer & Patient Expert living with Multiple Sclerosis.
MS is inconvenient to say the least
I had great intentions of getting some additional projects worked on today, but alas, another nap. The exhaustion that comes with MS can be so inconvenient. My body is on a "healing" mode and has slowed down. I must listen and abide to it. The body. You can't fight the MS. But you can try and that is what one does with all of the western medicine for the disease.
Most of the 'medicine' is just a band-aid to cover up the disease's effects. I tried so many anti-fatigue drugs such as provigil and couldn't stay healthy. I kept getting skinner and was dry-heaving all day long. My MS gave me a sort of gag reflect with food. Which was fine for the first few pounds but when you could count every bone in my body, that was too much. My neurologist was threatening to send me to the hospital for anorexia. I just wanted to calm my system down enough to eat. and not throw up. That was when I tried THC for the first time as a medicine. And OK, things are going to be different from now on.
Over time I found that the majority of my symptoms could be controlled when I found a better balance between my physical, spiritual, mental and emotional cornerstones of life. There are several part so of my treatment that are necessary to my success with MS:
Friends and Famiily
Diet/nutrition
Medicine/Alternative/Herbals for your needs
Exercise
Fresh Air
Movement
Mind stimulation
Hand eye coordination work - roping, fishing, golfing
Mind eye coordination work - i.e. typing, computer programming, art, etc.
Animals
Gardening
Freedom
Stress-free living
iPods
Hobbies
hounddogs
fishing
photography
OK - getting off track.
off to a memorial service. Take care - remember. MS is a state of mind. I'm in a low one right now but will come out of it. I'm feeling a bit trapped but am playing hooky in a few days which means a road trip to Los Olivos for wine tasting and picnics and beautiful views. Ahhhhhhhh. That is what My MS needs!
Most of the 'medicine' is just a band-aid to cover up the disease's effects. I tried so many anti-fatigue drugs such as provigil and couldn't stay healthy. I kept getting skinner and was dry-heaving all day long. My MS gave me a sort of gag reflect with food. Which was fine for the first few pounds but when you could count every bone in my body, that was too much. My neurologist was threatening to send me to the hospital for anorexia. I just wanted to calm my system down enough to eat. and not throw up. That was when I tried THC for the first time as a medicine. And OK, things are going to be different from now on.
Over time I found that the majority of my symptoms could be controlled when I found a better balance between my physical, spiritual, mental and emotional cornerstones of life. There are several part so of my treatment that are necessary to my success with MS:
Friends and Famiily
Diet/nutrition
Medicine/Alternative/Herbals for your needs
Exercise
Fresh Air
Movement
Mind stimulation
Hand eye coordination work - roping, fishing, golfing
Mind eye coordination work - i.e. typing, computer programming, art, etc.
Animals
Gardening
Freedom
Stress-free living
iPods
Hobbies
hounddogs
fishing
photography
OK - getting off track.
off to a memorial service. Take care - remember. MS is a state of mind. I'm in a low one right now but will come out of it. I'm feeling a bit trapped but am playing hooky in a few days which means a road trip to Los Olivos for wine tasting and picnics and beautiful views. Ahhhhhhhh. That is what My MS needs!
Stop on Spot and slow down
Sometimes you just have to come to a stop and slow down (meet Spot - 4 yr old gelding). Right now I'm riding just enough to get the motion and movement but not enough to overheat and overdo.
It's a daily balance of integral therapy as I'm learning. A whole new study to take interest in. The balance of physical, spiritual, mental and emotional. Makes sense. The cornerstones of our lives.
I was reading earlier - but my vision got a bit blurry. My vision is one of the first to go. And the hands when I'm typing or writing. The fingers will just collapse a bit. Done. Like right now. I've been trying to hook up the blog to flickr, etc., and there was some discussion with the software. But now, time for catching up on news and whats going on out there.
My sister was here for a bit today which is always a treat. Family and friends - my greatest assets. My dog of course. But when you are illin' there is nothing better than family and friends.
Fingers failing. Off to water the plants, if it's our day of the week (three year drought).
It's a daily balance of integral therapy as I'm learning. A whole new study to take interest in. The balance of physical, spiritual, mental and emotional. Makes sense. The cornerstones of our lives.
I was reading earlier - but my vision got a bit blurry. My vision is one of the first to go. And the hands when I'm typing or writing. The fingers will just collapse a bit. Done. Like right now. I've been trying to hook up the blog to flickr, etc., and there was some discussion with the software. But now, time for catching up on news and whats going on out there.
My sister was here for a bit today which is always a treat. Family and friends - my greatest assets. My dog of course. But when you are illin' there is nothing better than family and friends.
Fingers failing. Off to water the plants, if it's our day of the week (three year drought).
Baaaaah humbug
that's me right now - bah humbug! wouldn't mind taking a nap. Feel like I need one. Body worn out. But good friend, sister, is here and want to play. Isn't that often a big problem with MS is finding a balance with energy and demands? Wishes and desires. Abilities and frustrations. But this little Icelandic sheep, Oyster, makes me smile. Such simple animals yet providers of much.
Off to take a small walk. Get the blood flowing after a huge salad lunch of this and that. I will have to post some of my recipes. I have some good ones created.
More later, take care, enjoy life!
Off to take a small walk. Get the blood flowing after a huge salad lunch of this and that. I will have to post some of my recipes. I have some good ones created.
More later, take care, enjoy life!
Horse, MS, an infuriating disease
So now I'm thinking of starting a nonprofit that works with horses and MS. A way to afford the horses and to ride and to help others and to stay healthy. I'm not exactly sure how it would work but if it would allow me to share my knowledge with others and to help the cause then that sounds pretty darn cool.
Sometimes it's the loneliness I feel that is somewhat caused by the MS. A small depression in my otherwise happy existence. I can't live my normal life. I can't keep up with many friends and folks my age. My dear friends accept this and adapt. New friends do as well. Except on the partner front. They still don't ever seem to get the needs I may have no matter how kind or sensitive they are by nature.
MS is a difficult disease to work with. Let's face it. I don't look disabled. But everyday is a challenge for me. What can I do today?
Today I am down. My inability to drive beyond city limits is exhausting. My only relief is to ride, but my pony is sore right now. I need to change farriers, etc. She's barefoot and I'm hoping to keep her that way, but that again is another story. I'm a bit stuck feeling. But that is my fault as well. Why don't I got for a walk? I'm exhausted, that's why!
Yesterday was a long day for me. Even though I rested, I pushed myself to the max. Long, hot day. And now I'm beat. I will go to barn to check on k-girl. my poor k-girl who is one sore little trooper.
MS is exhausting and folks dont often understand. Exhaustion due in part by the need for us to micromanage our lives in order to survive. Every hour. Every event. Every darn thing in life is approached with the question, "Can I do this today?"
And coming from someone who used to have some real life adventures, having to ask myself this question on a daily basis just to live can be infuriating.
Sometimes it's the loneliness I feel that is somewhat caused by the MS. A small depression in my otherwise happy existence. I can't live my normal life. I can't keep up with many friends and folks my age. My dear friends accept this and adapt. New friends do as well. Except on the partner front. They still don't ever seem to get the needs I may have no matter how kind or sensitive they are by nature.
MS is a difficult disease to work with. Let's face it. I don't look disabled. But everyday is a challenge for me. What can I do today?
Today I am down. My inability to drive beyond city limits is exhausting. My only relief is to ride, but my pony is sore right now. I need to change farriers, etc. She's barefoot and I'm hoping to keep her that way, but that again is another story. I'm a bit stuck feeling. But that is my fault as well. Why don't I got for a walk? I'm exhausted, that's why!
Yesterday was a long day for me. Even though I rested, I pushed myself to the max. Long, hot day. And now I'm beat. I will go to barn to check on k-girl. my poor k-girl who is one sore little trooper.
MS is exhausting and folks dont often understand. Exhaustion due in part by the need for us to micromanage our lives in order to survive. Every hour. Every event. Every darn thing in life is approached with the question, "Can I do this today?"
And coming from someone who used to have some real life adventures, having to ask myself this question on a daily basis just to live can be infuriating.
Horses, Movement therapy and MS
Movement therapy. I know nothing about it but believe in it. Nothing calms my MS better than riding my horses. Even just at a walk. Or a trot. Rhythm, balance, movement. And I sweat! That sounds weird but I don't have to work hard, it comes easy, I sweat out toxins and cool off my body.
I have actually been able to stay out in the heat this summer. Granted I water down often and I'm not doing that much but compared to the last eight years. Wow. And sometimes I use my cooling vest from Arctic Heat.
Here you can see a photo of me in the Galapagos wearing a sun shirt over the vest in this ego-boosting article about my photography:
http://www.athleta.net/chi/2008/08/28/survival-of-the-fittest/
MS management takes into consideration all aspects of life: diet, exercise, stress-free living, friends, family, happiness, love, life.
Heat management is one that can be dealt significantly with diet. I ate my apple today. several glasses of cool water. Shentrition. Cheese sandwich on white bread (OK, not good, but sometimes you just have to go for comfort), water, water, water. Fruit. Water. We'll have chicken tonight because that's what is in the fridge. I could grill - but do we need the added heat? no. But will it taste good? you bet. We'll see. I haven't decided. And that's a good thing with MS - we must learn how to be flexible and not have everything planned or expected a certain way.
As you can see, I'm a rambler. An e-babbler. But within this babble is something note worthy to those with MS or who may know someone with MS>
I have actually been able to stay out in the heat this summer. Granted I water down often and I'm not doing that much but compared to the last eight years. Wow. And sometimes I use my cooling vest from Arctic Heat.
Here you can see a photo of me in the Galapagos wearing a sun shirt over the vest in this ego-boosting article about my photography:
http://www.athleta.net/chi/2008/08/28/survival-of-the-fittest/
MS management takes into consideration all aspects of life: diet, exercise, stress-free living, friends, family, happiness, love, life.
Heat management is one that can be dealt significantly with diet. I ate my apple today. several glasses of cool water. Shentrition. Cheese sandwich on white bread (OK, not good, but sometimes you just have to go for comfort), water, water, water. Fruit. Water. We'll have chicken tonight because that's what is in the fridge. I could grill - but do we need the added heat? no. But will it taste good? you bet. We'll see. I haven't decided. And that's a good thing with MS - we must learn how to be flexible and not have everything planned or expected a certain way.
As you can see, I'm a rambler. An e-babbler. But within this babble is something note worthy to those with MS or who may know someone with MS>
angry wildlife
I've been bombarded by liquid amber pods struck down from above by angry squirrels. One of which scolded me for at least five minutes while I was in his or her way to get home or something. There are rats the size of bobcats scrambling around the backyard. I'm pretending not to notice. they just need salvation. Don't we all!
One thing above all that I have learned with my MS - salvation. A struggle to see it but once I experienced it, I felt all good inside.
I can smell the burn now. Still, thankfully, no winds. Nature is doing it's thing. And I'm doing mine. I may not ever get to a book but there is quite a bit about MS that I want to share to help others.
So, take care of yourselves tonight! that means light on the wine and whiskey and heavy on the detox tea. Read well. Breathe deep. Sleep in peace.
One thing above all that I have learned with my MS - salvation. A struggle to see it but once I experienced it, I felt all good inside.
I can smell the burn now. Still, thankfully, no winds. Nature is doing it's thing. And I'm doing mine. I may not ever get to a book but there is quite a bit about MS that I want to share to help others.
So, take care of yourselves tonight! that means light on the wine and whiskey and heavy on the detox tea. Read well. Breathe deep. Sleep in peace.
Prima Dona
I was just told by one of my friends that I was acting like a prima dona. My friend who has been in bed all day. I have been working. But I chose to eat twenty minutes after they did. How dare I?!
This sort of crap makes me want to move. I have offers. Maybe it's time. But I don't think so. Not yet.
Sometimes with MS you have to be a Prima Dona. Boundaries become mand-A-tory. Most of the folks that have MS, whom I have met, are all "go getters". Folks that may have a few issues with boundaries. At least I have had fault with keeping to my own guidelines.
On another note, the mountain, as I'm watching it today, looking east toward the west-facing slope of Winery Canyon, doesn't look as bad as it could. Probably the lighting is just right but there are some oaks still standing. Hope of some photosynthesis already taking place. Nature's way of healing on the spot.
The sounds of sirens - eerie yet I don't think there is anything left to burn. If our house had gone they would have taken their stand at foothill. We would have been Palos Verdes with a lot more disasters. Whew.
This sort of crap makes me want to move. I have offers. Maybe it's time. But I don't think so. Not yet.
Sometimes with MS you have to be a Prima Dona. Boundaries become mand-A-tory. Most of the folks that have MS, whom I have met, are all "go getters". Folks that may have a few issues with boundaries. At least I have had fault with keeping to my own guidelines.
The sounds of sirens - eerie yet I don't think there is anything left to burn. If our house had gone they would have taken their stand at foothill. We would have been Palos Verdes with a lot more disasters. Whew.
Remission or Re-management
When folks ask me if I'm in remission with my MS, I say no, I'm in re-management. Each day has the possibility of being a complete setback if my health is mismanaged. And I'm not that good at managing it. I try, no doubt. But i have my weaknesses as we all do.
It starts with going to bed the night before, in a peaceful, quiet state of mind. I don't often achieve that so its something I'm working on. When I get up I review my body. How is it feeling? can I move my fingers, my toes? sometimes I bathe and meditate. stretch. do some yoga. Often I just go to the barn and ride. Something to put me in rhythm. Something outside that is fresh air and movement. Some days I can't go outside, it's too hot or something, so I work on the computer. My fingers often fail me and fall asleep so my time on the computer is taken in spurts.
I start every morning with coffee. If my housemates are gone I usually just drink decaf. But if they're here we drink half and half. I have always loved my coffee. Sometimes it feels too dark for me and I drink tea which is more cleansing for me, but I love dark roasted coffee. And I drink my Shentrition every morning. I mix mine up in a water bottle and take it to the barn with me. And usually an apple and piece of cheese as well. Seems like enough. Eggs are good but I get lazy.
I take some meds but not too many. I had side effects with western medicine so limit myself to a small variety of medicinal herbs and pills along with nutritional dietary intelligence. We'll get into that later.
The most important thing for me right now is to take care of myself in this heat and the stress of the fire. Time to chill my inner core and meditate. I've been running a bit ragged lately and I can feel it. Slow down. Breathe deep. Ahhhhhhhh.
It starts with going to bed the night before, in a peaceful, quiet state of mind. I don't often achieve that so its something I'm working on. When I get up I review my body. How is it feeling? can I move my fingers, my toes? sometimes I bathe and meditate. stretch. do some yoga. Often I just go to the barn and ride. Something to put me in rhythm. Something outside that is fresh air and movement. Some days I can't go outside, it's too hot or something, so I work on the computer. My fingers often fail me and fall asleep so my time on the computer is taken in spurts.
I start every morning with coffee. If my housemates are gone I usually just drink decaf. But if they're here we drink half and half. I have always loved my coffee. Sometimes it feels too dark for me and I drink tea which is more cleansing for me, but I love dark roasted coffee. And I drink my Shentrition every morning. I mix mine up in a water bottle and take it to the barn with me. And usually an apple and piece of cheese as well. Seems like enough. Eggs are good but I get lazy.
I take some meds but not too many. I had side effects with western medicine so limit myself to a small variety of medicinal herbs and pills along with nutritional dietary intelligence. We'll get into that later.
The most important thing for me right now is to take care of myself in this heat and the stress of the fire. Time to chill my inner core and meditate. I've been running a bit ragged lately and I can feel it. Slow down. Breathe deep. Ahhhhhhhh.
Burnt hills
All around, and still burning, the mountains char. Makes one want to eat sushi or something cold and clean. Too much searing going on.
Today was another blessing as the weather/air quality improved I was able to ride a bit. It's the rhythm and affection from the horses more than anything. Not that the horses give a lot of affection. But at least they acknowledge your existence and understand that a good time should be had.
I don't have anyone to talk about the horses much so you'll be getting an earful. The only one who even understands what I'm talking about is someone I'm not super keen on talking to right now. But that has nothing to do with MS necessarily. What does have to do with MS is the fact that my eyelids are trying to drop on me. My fingers are faultering. many many typos. Need small nap. re-energize.
Today was another blessing as the weather/air quality improved I was able to ride a bit. It's the rhythm and affection from the horses more than anything. Not that the horses give a lot of affection. But at least they acknowledge your existence and understand that a good time should be had.
I don't have anyone to talk about the horses much so you'll be getting an earful. The only one who even understands what I'm talking about is someone I'm not super keen on talking to right now. But that has nothing to do with MS necessarily. What does have to do with MS is the fact that my eyelids are trying to drop on me. My fingers are faultering. many many typos. Need small nap. re-energize.
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