When I was diagnosed with MS, my doctor told me that I was lucky, that so many options would have been worse.
I know what he was thinking. Some of the things they tested me for including ALS and Lupus are virtually death sentences and pretty uncomfortable in the process. With MS, especially relapsing and remitting MS, I'm fairly healthy most of the time. I am especially lucky that I have such a mild case.
Yeah, right.
You see the doctor said that I probably knew people, saw them every day and never even knew they were MS victims. To the casual observer, the signs of the disease in many people are almost non-existent.
Well guess what. This is my life and I am not a casual observer. I am acutely aware of everything that I cannot do, that I have to or that has changed about my life because of this inconvenient disease.
As a kid, my step-father called me a mountain goat, because I loved to climb on anything and I could usually find a path up even the steepest hill. Now, I'm lucky to keep my balance walking across an uneven parking lot.
I decide not to go on outings with friends because I can't walk more than about half a mile without needing to stop and sit my down for my back. The back spasms cause me to trip and stumble.
When I do walk, I can't walk rapidly... I used to be able to stride with a purpose.
I only drive short distances. From the time I got my first car, I loved the freedom it represented. My first car was a rattle trap I bought for $250 and I still took it to Louisiana (500 miles) to go visit a friend right after I moved to Illinois. It had no heater and the window wouldn't roll up all the way, but I was free on the Interstate.
Now, if I drive for more than an hour, that stumbling is in full force, and I can't enjoy arriving at the destination. After about an hour of driving, my foot seizes up anyway and I don't feel safe driving for much longer.
I love hiking and backpacking, but they are pretty much out now. Going to fairs or the zoo requires planning and lots of rests breaks.
I am thankful that my disease is not as bad as it could be, but that doesn't mean ti isn't bad for me.
And in the most simple of phrases, that sucks!
Thursday, July 23, 2009
Saturday, July 11, 2009
The Unexpected Bad Days
If you ever been to Southern Illinois, you know the truth in the statement, “It’s not the heat, it’s the humidity.”
Two years ago when I first tried to start this blog, I was having a pretty bad summer all around. I was seriously broke and I found out my MS meds had screwed with my blood chemistry and liver functions, leaving me depressed and sick. On the upside, the MS itself was not flaring up.
We had a horribly hot summer and I thought at the time that maybe I was the odd man out in autoimmune diseases, because I felt best when I could open the windows and door and get some fresh air. I kept the air condition set near 80 that summer to keep my bills down.
Since then, I’ve realized that it’s not the heat, it’s the humidity. Yup, it sounds like an old cliché, but I have found it’s true. This summer we have had about 4 inches more rain than normal and the humidity has consistently been high. That summer, though the heat was miserable, it was a dry summer. Not quite a drought, but definitely more dry than normal.
So, the difference is that this summer, I am feeling the MS much more than usual. Yesterday, I stood in the park for about forty minutes talking with Theresa and Emily. We were just standing, but man was I worn out when we were done. I still had errands to run, including the much dreaded trip to Wal-Mart. By the time I got home, my back was seizing up and my limp very pronounced.
It was a tough day.
Days like that, when I am parking half a football field away and then wandering through the Super Wal-Mart is exceedingly painful. The use of the shopping cart to help maintain my balance makes me angry as I am too damn young to feel this crippled. Bending to grab something off the bottom shelf become a joke that isn’t funny and all I really want out of lie at that moment are heavy duty painkillers. I make due with Tylenol and ignore the fact that it can combine with the MS medicine to give me liver troubles. Easing the pain so I can walk is all that matters in that moment.
Today, the rain is pouring from the skies, but the humidity and heat combination is packing less of a punch. I can walk today.
Tomorrow is looking good too, but on Tuesday the temperature is supposed to jump to the mid-90s and with all this fresh water around, the humidity will be high. I think Tuesday I need to stay indoors.
Two years ago when I first tried to start this blog, I was having a pretty bad summer all around. I was seriously broke and I found out my MS meds had screwed with my blood chemistry and liver functions, leaving me depressed and sick. On the upside, the MS itself was not flaring up.
We had a horribly hot summer and I thought at the time that maybe I was the odd man out in autoimmune diseases, because I felt best when I could open the windows and door and get some fresh air. I kept the air condition set near 80 that summer to keep my bills down.
Since then, I’ve realized that it’s not the heat, it’s the humidity. Yup, it sounds like an old cliché, but I have found it’s true. This summer we have had about 4 inches more rain than normal and the humidity has consistently been high. That summer, though the heat was miserable, it was a dry summer. Not quite a drought, but definitely more dry than normal.
So, the difference is that this summer, I am feeling the MS much more than usual. Yesterday, I stood in the park for about forty minutes talking with Theresa and Emily. We were just standing, but man was I worn out when we were done. I still had errands to run, including the much dreaded trip to Wal-Mart. By the time I got home, my back was seizing up and my limp very pronounced.
It was a tough day.
Days like that, when I am parking half a football field away and then wandering through the Super Wal-Mart is exceedingly painful. The use of the shopping cart to help maintain my balance makes me angry as I am too damn young to feel this crippled. Bending to grab something off the bottom shelf become a joke that isn’t funny and all I really want out of lie at that moment are heavy duty painkillers. I make due with Tylenol and ignore the fact that it can combine with the MS medicine to give me liver troubles. Easing the pain so I can walk is all that matters in that moment.
Today, the rain is pouring from the skies, but the humidity and heat combination is packing less of a punch. I can walk today.
Tomorrow is looking good too, but on Tuesday the temperature is supposed to jump to the mid-90s and with all this fresh water around, the humidity will be high. I think Tuesday I need to stay indoors.
Sunday, July 5, 2009
Picking Blueberries...or not...
It seems like an easy question and one completely devoid of implications related to multiple sclerosis, but that is not quite the case.
Anyone who has picked blueberries, or any other berries, knows that the motion for the picking can be tough on your back and generally, heat makes the berries sweeter. So, bloueberry picking is usually a hot, physically stressful passtime.
Last year, I went with a dear friend and picked berries not too far from our home. We picked about five pounds of berries in an hour or so. I suffered for it for days.
The blueberry farm is on a fairly steep hill leaving me on awkward footing. Furthermore, the best way to pick blueberries is to tie a bucket around your waist and roll the berries off the bush and into the bucket. This is awkward on anyone's back, but one of the major pain centers for me with my MS is my lower back. For years, we thought I had sciatica, not multiple sclerosis and my lower back has a tendancy to simply seize sometimes making walking or standing difficult. Just over an hour in the hot July sun and the awkward stance of blueberry picking led to one of those seizures. I could barely walk afterward.
Now, the upside of picking blueberries is that exercise, though painful and unpleasant, is one of the best things for fighting MS without medications. The healthier overall that I can keep my body, the fewer relapses I tend to have.
Another upside of picking blueberries is that they are way cheaper if you pick them yourself. This is important because I eat a lot of blueberries. Blueberries are a superfood, a tremendous antioxidant and great for my natural fighting MS diet.
So when the opportunity to go berry picking today arose, I was torn. The day is humid, but not overly hot. But the hill is still steep and I have to be able to walk tomorrow for work. So I skipped the berry picking. It left me frustrated and angry. Something so simple and such fun (chatting with a friend and enjoying the day) should not have implications for days and days, but it does.
Anyone who has picked blueberries, or any other berries, knows that the motion for the picking can be tough on your back and generally, heat makes the berries sweeter. So, bloueberry picking is usually a hot, physically stressful passtime.
Last year, I went with a dear friend and picked berries not too far from our home. We picked about five pounds of berries in an hour or so. I suffered for it for days.
The blueberry farm is on a fairly steep hill leaving me on awkward footing. Furthermore, the best way to pick blueberries is to tie a bucket around your waist and roll the berries off the bush and into the bucket. This is awkward on anyone's back, but one of the major pain centers for me with my MS is my lower back. For years, we thought I had sciatica, not multiple sclerosis and my lower back has a tendancy to simply seize sometimes making walking or standing difficult. Just over an hour in the hot July sun and the awkward stance of blueberry picking led to one of those seizures. I could barely walk afterward.
Now, the upside of picking blueberries is that exercise, though painful and unpleasant, is one of the best things for fighting MS without medications. The healthier overall that I can keep my body, the fewer relapses I tend to have.
Another upside of picking blueberries is that they are way cheaper if you pick them yourself. This is important because I eat a lot of blueberries. Blueberries are a superfood, a tremendous antioxidant and great for my natural fighting MS diet.
So when the opportunity to go berry picking today arose, I was torn. The day is humid, but not overly hot. But the hill is still steep and I have to be able to walk tomorrow for work. So I skipped the berry picking. It left me frustrated and angry. Something so simple and such fun (chatting with a friend and enjoying the day) should not have implications for days and days, but it does.
Friday, July 3, 2009
Okay, so I'll try again
Two years ago, I tried to start a blog about my experience with multiple sclerosis and I failed miserably. Two years and a total of sixteen posts.
But with the encouragement of the Write Sisters, my local writing group, I've decided to try again. To be certain, my battle with MS is not as dramatic and terrifying as others that I have seen. My battle is largely conducted in secret with only my husband, my doctor and a few very close friends ever seeing the war I wage.
Sometimes, because I am so successful in waging this battle, it is easy for people around me to forget or never even know that I have a part of my body trying to destroy the rest of it. I notice more when I'm hot or tired or battling something as simple as a minor cold.
Yesterday, I noticed it in the dentist's chair. First, it was while I was waiting for the numbing shots to kick in. My hands were shaking badly enough that I needed to hold the remote with two hands to be able to turn channels on the television the dentist graciously provided.
then, as I sat for hours during the procedure, I noticed the need to ask for breaks, to run to the bathroom and stretch rather than staying in one position too long. When I got up from the chair, the limp was more pronounced than it usually is.
Today as I recover from the scaling and root planing, I realize I will recover more slowly than most people. It will require better pain management and a longer recovery time. And, just for a minute, I am reminded that my immune system and I are not friends and never will be again.
Most days, this blog will be about living a full life with MS. There are only a few things I don't do because of the illness, but there may be days I talk or whine about those as well. I hope you'll come along for the ride.
But with the encouragement of the Write Sisters, my local writing group, I've decided to try again. To be certain, my battle with MS is not as dramatic and terrifying as others that I have seen. My battle is largely conducted in secret with only my husband, my doctor and a few very close friends ever seeing the war I wage.
Sometimes, because I am so successful in waging this battle, it is easy for people around me to forget or never even know that I have a part of my body trying to destroy the rest of it. I notice more when I'm hot or tired or battling something as simple as a minor cold.
Yesterday, I noticed it in the dentist's chair. First, it was while I was waiting for the numbing shots to kick in. My hands were shaking badly enough that I needed to hold the remote with two hands to be able to turn channels on the television the dentist graciously provided.
then, as I sat for hours during the procedure, I noticed the need to ask for breaks, to run to the bathroom and stretch rather than staying in one position too long. When I got up from the chair, the limp was more pronounced than it usually is.
Today as I recover from the scaling and root planing, I realize I will recover more slowly than most people. It will require better pain management and a longer recovery time. And, just for a minute, I am reminded that my immune system and I are not friends and never will be again.
Most days, this blog will be about living a full life with MS. There are only a few things I don't do because of the illness, but there may be days I talk or whine about those as well. I hope you'll come along for the ride.
Saturday, October 27, 2007
Taking a new direction
Okay, when is started this, i was sure i could just blog about my MS and have plenty to say.
But the truth of the matter is that most days, I don't thinka bout my MS. oh, sure , my ears perk up when I hear someone talking about multiple sclerosis to see if maybe they're saying soemthing I don't know, but the reality is, that rarely happens.
Today, I thought about it once when I grabbed the side of the porch to help ease my way down the steps and once when the local news had a questions from a viewer about whether a person with MS should get a flu shot....ummm...let me think about that for a second. Yup, get a flu shot. Already on my list of things to do. Don't want to....they usually make my arm hurt for a couple days, but I have a disease of the immune system that gets worse when my immune system has to work. It really does seem like a no-brainer.
But I suppose not everyone takes the time to understand what makes their MS worse and how to avoid relapses. Mostly, I'm just so damn thrilled that I don't have progressive MS that I try to ignore that I have it at all.
If I can ignore it, it will ignore me, right?
Well, can't blame a girl for trying.
Actually, I know that I am in the midst of a minor relapse right now. No new symptoms, just the old ones getting worse. My best friend noticed it the other day. I thought I was hiding it pretty well. Shows what I know.
I have, however, decided that I am done letting the MS rule my life. I'm going back to work, preferably full time in a real job, not just freelancing. Don't get me wrong, I love freelancing, but I have found that when I have to crank out web articles for a living, I have no desire at the end of the day to write for pleasure and I can't become a world famous author if I don't write the darn book.
Sure, I have it all written in my head, but we really wouldn't want people trying to read that, would we?
So wish me luck in my journeys back to the world of real life employment and look for me at a newspaper near you. I'll be the girl hobbling after the story.
But the truth of the matter is that most days, I don't thinka bout my MS. oh, sure , my ears perk up when I hear someone talking about multiple sclerosis to see if maybe they're saying soemthing I don't know, but the reality is, that rarely happens.
Today, I thought about it once when I grabbed the side of the porch to help ease my way down the steps and once when the local news had a questions from a viewer about whether a person with MS should get a flu shot....ummm...let me think about that for a second. Yup, get a flu shot. Already on my list of things to do. Don't want to....they usually make my arm hurt for a couple days, but I have a disease of the immune system that gets worse when my immune system has to work. It really does seem like a no-brainer.
But I suppose not everyone takes the time to understand what makes their MS worse and how to avoid relapses. Mostly, I'm just so damn thrilled that I don't have progressive MS that I try to ignore that I have it at all.
If I can ignore it, it will ignore me, right?
Well, can't blame a girl for trying.
Actually, I know that I am in the midst of a minor relapse right now. No new symptoms, just the old ones getting worse. My best friend noticed it the other day. I thought I was hiding it pretty well. Shows what I know.
I have, however, decided that I am done letting the MS rule my life. I'm going back to work, preferably full time in a real job, not just freelancing. Don't get me wrong, I love freelancing, but I have found that when I have to crank out web articles for a living, I have no desire at the end of the day to write for pleasure and I can't become a world famous author if I don't write the darn book.
Sure, I have it all written in my head, but we really wouldn't want people trying to read that, would we?
So wish me luck in my journeys back to the world of real life employment and look for me at a newspaper near you. I'll be the girl hobbling after the story.
Tuesday, August 14, 2007
Heat Waves and MS
Most of the central United States is in the midst of a killer heat wave and my region is certainly no different. Actually, we had a cold front come through in the alst few days so temps have only been in the high 90s...only!
I stand by my earlier post that it is the difference in temperatures that really do me in, but when the outdoor heat index is over 100 degrees, it doesn't take much for that heat to kick my butt.
Sunday I went grocery shopping and the total time spent outside of air conditioning was maybe five minutes between the walk to the car and unloading groceries, but it was enough to exhaust me for the rest of the day. And I know that one of the most important things about this kind of heat is to stay hydrated, but it wasn't until late yesterday afternoon that I realized the fog I was in was due to the fact that I wasn't drinking enough water.
I had the misconception that since I was staying in out of the heat that I didn't need to be increasing my water consumption. WRONG! I forgot to take into accunt that my air conditioner can only do so much agaisnt the humidity and even those short jaunts outside suck water out of you like nobody's business.
Today it's a bit cooler. I think the high is in the low 90s and the humidity seems to be down. It didn't feel like an oven as soon as I walked out the door. But I did notice that after 15 minutes outside of my climate controlled house, the heat headache started up full throttle. It may be cooler today, ut the heat is still a killer.
And, I guess I'm one of the lucky ones. I have air conditioning and can afford to run it. Better yet I live in a community that recognizes the dangers of excessive ehat and has designated cooling centers for people who might not have the air conditioning they need.
Still I wonder if we couldn't be doing more to get the elderly and infirmed to cooler places. Yesterday there were deaths in St. Louis, Missouri, (about 2 hours from me) and Louisville, KY (3-4 hours away) from the heat. It makes me wonder why in a land as wealthy and as prosperous as the United States we still have these things happen. Why were these people not better taken care of? And more importantly, does anyone even care?
I stand by my earlier post that it is the difference in temperatures that really do me in, but when the outdoor heat index is over 100 degrees, it doesn't take much for that heat to kick my butt.
Sunday I went grocery shopping and the total time spent outside of air conditioning was maybe five minutes between the walk to the car and unloading groceries, but it was enough to exhaust me for the rest of the day. And I know that one of the most important things about this kind of heat is to stay hydrated, but it wasn't until late yesterday afternoon that I realized the fog I was in was due to the fact that I wasn't drinking enough water.
I had the misconception that since I was staying in out of the heat that I didn't need to be increasing my water consumption. WRONG! I forgot to take into accunt that my air conditioner can only do so much agaisnt the humidity and even those short jaunts outside suck water out of you like nobody's business.
Today it's a bit cooler. I think the high is in the low 90s and the humidity seems to be down. It didn't feel like an oven as soon as I walked out the door. But I did notice that after 15 minutes outside of my climate controlled house, the heat headache started up full throttle. It may be cooler today, ut the heat is still a killer.
And, I guess I'm one of the lucky ones. I have air conditioning and can afford to run it. Better yet I live in a community that recognizes the dangers of excessive ehat and has designated cooling centers for people who might not have the air conditioning they need.
Still I wonder if we couldn't be doing more to get the elderly and infirmed to cooler places. Yesterday there were deaths in St. Louis, Missouri, (about 2 hours from me) and Louisville, KY (3-4 hours away) from the heat. It makes me wonder why in a land as wealthy and as prosperous as the United States we still have these things happen. Why were these people not better taken care of? And more importantly, does anyone even care?
Thursday, July 19, 2007
The Weather Man was right...
So I ahd to go to the store today and I had an appointment with my counselor so, I was out in the hottest part of the day...and the weather man was right. It was downright miserable.
My car was scorching hot when I got back in it after a 45 minute counseling session and I was miserable. I think the heat index pushed the temperature well above 100 degrees today and the severe storms are supposed to start any minute.
And, like any good MS patient, the heat nearly drained me when I was out in it.
But I confirmed what I ahd been thinking anyway...it's actually the changing of temperatures that really kills me. going from cool to hotter than hell and backa gain was the real killer. Within jsut a few minutes of returning to my icebox of 74 degrees in the air conditioning, I was shivering and wante d alanket.
Wouldn't it be fun if you could be in charge of the research for sure to a disease you suffer from?
I am convinced based on my own experience that changing temperatures make it worse and they say the great majority of MS sufferers are from Northern European descent and have lived in regions relatively far from the equator...so I want a study on the human nervous system tos ee the effects of the four seasons...My new pain-in-the-ass theory is that spring and fall did this to me...
I'm joking of course but I do know that changing temp[s make it worse....I wonder if science knows that too...
My car was scorching hot when I got back in it after a 45 minute counseling session and I was miserable. I think the heat index pushed the temperature well above 100 degrees today and the severe storms are supposed to start any minute.
And, like any good MS patient, the heat nearly drained me when I was out in it.
But I confirmed what I ahd been thinking anyway...it's actually the changing of temperatures that really kills me. going from cool to hotter than hell and backa gain was the real killer. Within jsut a few minutes of returning to my icebox of 74 degrees in the air conditioning, I was shivering and wante d alanket.
Wouldn't it be fun if you could be in charge of the research for sure to a disease you suffer from?
I am convinced based on my own experience that changing temperatures make it worse and they say the great majority of MS sufferers are from Northern European descent and have lived in regions relatively far from the equator...so I want a study on the human nervous system tos ee the effects of the four seasons...My new pain-in-the-ass theory is that spring and fall did this to me...
I'm joking of course but I do know that changing temp[s make it worse....I wonder if science knows that too...
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