The evening before my fourty-eighth birthday, my boyfriend asked me what I wanted to do the next day. I wanted to go on a hike that we had been planning for quite some time. Several times we had almost gotten everything worked out to do this; but it seemed like something always came up to change the plan. So we decided that we would get an early start the next day.
The next morning we managed to get all our stuff together for the hike. Plenty of water, picnic lunch, rain gear, and a few odds and ends. We studdied the map again and made sure of the way we wanted to go. Knowing that we would be crossing the river several times we wore shorts and tennis shoes. Soon we made our way down the road where we would park the truck.
Armed with our supplies and walking sticks we are thankful for the beautiful day as we begin our hike. I am so excited. The hike was going to be around three hours. The river was down and was going to be easy to cross. In places we would end up actually walking down stream a little ways.
Eagles, hawks, falcons, and blue herons favored us with their presence. There were old homesteads that had wonderful rock foundations. Crossing the river every now and again to keep on the old trail kept us from getting to hot. Around long curves in the river we came to see amazing cliffs that seemed to go on forever. We took pictures, had our picnic, and decided to head back toward the truck.
What a great birthday. It was so awesome to have finally accomplished this hike and discovered some great places. Now we would be able to mark it on our map of places we had been.
The trail we were following had rather tall grass on either side. Michael was walking in front of me using his walking stick to beat the grass back a little, keeping an eye out for things that tend to live along the river banks. I was doing the same thing about ten feet behind him. We had walked through some pretty grown up places over the last several years just like this.
Suddenly, I saw something coming out of the grass, right over my right foot. I knew in that instant that if I put my foot down I was in trouble. I thought if I kept the step in motion, but kicked, I could get away. As I made the effort of kicking forward, I felt a stinging sensation like a greenbriar going into my ankle. When I put my foot down I felt as if I had encountered an electric charge. Now I had a three foot long copperhead laying between my feet!
As I was pounding at the snake with my walking stick, I looked at my ankle and realized I had been bitten. I started screaming. "I've been bit, I've been bit!" Michael turned and saw what had happend. He took a couple strides and grabbed my arm to get me away from the snake. He tried to stab the snake with his treking pole and it slid off to cover. He returned to my side and put my arm around his shoulder and his around my back holding on to the waist of my jeans shorts. Then he commanded, "walk, just keep walking!" At that point it was all I could do to remain conscious. I just wanted to lay down. "Keep walking", he said. "I can't". The pain was incredible. I just wanted to let go and pass out so I wouldn't feel any thing. My leg was on fire. I wanted nothing so badly as to be at the truck and on my way to the hospital. My mind was trying to comprehend what had happened. I didn't think I could go on. In and out of the present, some how hanging on to Michael's voice, I manged to stay on my feet enough for him to get me to the truck.
As we made the last river crossing I was pretty much passed out. Michael sat me on a big rock so he could get the truck open. Then he lifted me into it and we started up the road to the hospital. I really do not remeber much of the ride. Several times I heard Michael telling me to stay awake, to stay with him.
While I can not remember all the details; actually not many at all, I do know that I have never felt that kind of pain in my life.
After about a nineteen minute drive; that should have taken at least thirty-five or more,we arrived at the emergency room. Since Michael had taken just long enough to stop at home and call ahead they were waiting for us. A woman met us at the door with a wheelchair and wisked me an examination room that had been prepared.
The IV's were ready along with the anti-venin. While I was being hooked up, the bite marks were measured and marked. As the pain meds started to work I finally just let go and passed out. I guess my mind was at the point that I was in as safe a place as I could be.
I remember waking occassionally to nurses and staff coming and going. At some point I was moved to the intensive care ward. The next twenty four hours are a complete loss to me.
When it was decided that I was going to be ok, I was moved to general observation. There were employees from all over the hospital coming to ask if they could see the bite marks. I remember the first time I really had the nerve to look myself. I didn't even recognize my own leg. It seemed like I was looking at some one else. I had seen a lot of wounds and injuries as an EMT. But when I looked and saw that my leg was horribly swollen and discolored I was shocked. I rang for the nurse who measured the ankle to see if there was a difference in the swelling to find that it was eleven inches around. My leg was black up to my hip. She called the doctor in and he ordered more blood work to see what was going on. That was when we found that I had a secondary infection. That earned me a couple more days in the hospital.
Finally on Friday I was allowed to go home. I had antibiotics, pain medicine, and orders to keep the leg elevated as much as possible, and bed rest.
After four week of rest I was incredibly bored. I told Michael I was ready to go out and do some hiking and climbing. The doctor had said it would be at least six weeks before I would even be able to put my boots on. But I had tried them on and even though that boot didn't lace as tight as the left, I could get it on.
So, we started off on a slow hike with the climbing gear. When we got to the crag, I was a little tired but the ankle didn't seem any more swollen. I managed a little climbing and felt pretty good. But not wanting to over do any thing, we hiked out and came home to rest and ice.
To this day, I am always on the look out for any thing that might be creeping along the paths and trails we hike. I am still a little nervous on the occasion of high grass and damp conditions. But that will not keep me from being in the great out doors I love so much!
Thursday, June 16, 2011
Wednesday, June 1, 2011
Life As It Is now
Time does take it's toll on all of us. Age seems to creep up and grab us by the tail. We slow down, have more aches and pains, and our endurance wavers. Add that up and add in a disease that does not shorten the life span. MS symptoms and residule issues from a stroke are taking a toll. There are times, and more frequently, days that I am feeling the result of having this disease. Some times I am so tired I feel as if I didn't have to move at all; I certainly would not. Holding a cup, silverware, touching anything is painful. Petting a dog is like running my hand over an electical field. Sparks of pain, burning like hot prickles run up my hands to my arms. Muscle cramps that leave black and blue marks that are sore for days. I have to be careful even when eating that I have enough water at hand to relieve choking. Eating dry food is out of the question. Sad to say that eating can be quite dangerous.
I am noticing some pretty dramatic changes is memory. There are times when I have to stop to think about how to do even the simplest things. Getting dressed can be a challenge. Funny how you can be in the middle of something you have done by yourself since you were a little child; now you have to stop and think about what you are doing.
Sometimes cooking, or just doing anything, and you stop to try to remember what you are trying to do. "Did I put the sugar in the cup?" "Did I put the coffee in the French Press?". I think the worst is driving off from somewhere and your mind is going a hundred miles an hour worrying about what was done or not done. Just hoping that all will be all right.
Memory loss is not just about the things in your head. Muscles and nerves suffer a kind of memory loss. Your legs forget how to walk properly. Your hands don't always hold on to what you pick up. Or instead of holding onto what you picked up, your hand just voluntarily throws it away from you. Good thing I had a plastic travel mug instead of ceramic this morning!
Then there are days when you know that your body is not really your own any more, but cooperates well enough to have a great day. You can overcome and deal with the problems. The strength in your muscles and determination in your heart allow you to have a great time. You really have to concentrate and think about what energy you need for the task and put your all into it. Then good things can be done. Great fun can be had. And some hard work accomplished.
It is amazing how so many people will judge you by the good days and on those "bad" days, they just wonder what is wrong with you. They can not understand why and how you can be so different on any given day. I will say that some times it would seem that I am lazy or unmotivated. I can not explain how hard it is to know that I will be sitting out. That I will not be able to be involved. That I can not help get the job done. It is hard to know that I can not hold a job because I don't know what the day will bring me. And I can not promise to any one that I can get the job done on any given day. Hard as I might try, some times I have to say enough. I am done for today.
Now, I am not writting all this as a complaint. I just want people to know that sometimes when you are looking at someone, there are things that you can not see. My heart and mind want so badly to do the things my body used to do. Sometimes sitting out is a very hard thing to do. I am learning though that I have to be able to say that I am done. No one else can determine that for me. So, I do the best that I can. Then I stop and am glad that I had the energy, coordination, and stability to accomplish what I did. And I am glad that I had the opportunity.
It is amazing to me to have some one in my life that is so tolerant, patient, kind, and helpful. "My Michael"as I like to call him, looks after me in a way that still lets me have my independence. When I am at the end of my endurance, he is there to pick up the slack. He will travel back up the rather steep hill to get my fishing gear, so that I will have the energy to hike that same hill later to get back to camp. He makes sure I eat and get enough hydration when we are out. If it is hot, he will make sure I have a cool place to be.
When we are out rock climbing, something that has helped me maintain muscle strength and coordination, he encourages and motivates me to give it all I have. He does not let me give up easily. At times I wonder at the things I have done in the last few years since we met. I have lost a considerable amount of wieght. I have more muscle strength than I had in a long time. And the muscle memory has improved quite a bit.
I will close on this now with a note on how impoprtant it is to have strong people in your life to motivate and challenge and most of all love you. Some one to stick with you through it all.
I am noticing some pretty dramatic changes is memory. There are times when I have to stop to think about how to do even the simplest things. Getting dressed can be a challenge. Funny how you can be in the middle of something you have done by yourself since you were a little child; now you have to stop and think about what you are doing.
Sometimes cooking, or just doing anything, and you stop to try to remember what you are trying to do. "Did I put the sugar in the cup?" "Did I put the coffee in the French Press?". I think the worst is driving off from somewhere and your mind is going a hundred miles an hour worrying about what was done or not done. Just hoping that all will be all right.
Memory loss is not just about the things in your head. Muscles and nerves suffer a kind of memory loss. Your legs forget how to walk properly. Your hands don't always hold on to what you pick up. Or instead of holding onto what you picked up, your hand just voluntarily throws it away from you. Good thing I had a plastic travel mug instead of ceramic this morning!
Then there are days when you know that your body is not really your own any more, but cooperates well enough to have a great day. You can overcome and deal with the problems. The strength in your muscles and determination in your heart allow you to have a great time. You really have to concentrate and think about what energy you need for the task and put your all into it. Then good things can be done. Great fun can be had. And some hard work accomplished.
It is amazing how so many people will judge you by the good days and on those "bad" days, they just wonder what is wrong with you. They can not understand why and how you can be so different on any given day. I will say that some times it would seem that I am lazy or unmotivated. I can not explain how hard it is to know that I will be sitting out. That I will not be able to be involved. That I can not help get the job done. It is hard to know that I can not hold a job because I don't know what the day will bring me. And I can not promise to any one that I can get the job done on any given day. Hard as I might try, some times I have to say enough. I am done for today.
Now, I am not writting all this as a complaint. I just want people to know that sometimes when you are looking at someone, there are things that you can not see. My heart and mind want so badly to do the things my body used to do. Sometimes sitting out is a very hard thing to do. I am learning though that I have to be able to say that I am done. No one else can determine that for me. So, I do the best that I can. Then I stop and am glad that I had the energy, coordination, and stability to accomplish what I did. And I am glad that I had the opportunity.
It is amazing to me to have some one in my life that is so tolerant, patient, kind, and helpful. "My Michael"as I like to call him, looks after me in a way that still lets me have my independence. When I am at the end of my endurance, he is there to pick up the slack. He will travel back up the rather steep hill to get my fishing gear, so that I will have the energy to hike that same hill later to get back to camp. He makes sure I eat and get enough hydration when we are out. If it is hot, he will make sure I have a cool place to be.
When we are out rock climbing, something that has helped me maintain muscle strength and coordination, he encourages and motivates me to give it all I have. He does not let me give up easily. At times I wonder at the things I have done in the last few years since we met. I have lost a considerable amount of wieght. I have more muscle strength than I had in a long time. And the muscle memory has improved quite a bit.
I will close on this now with a note on how impoprtant it is to have strong people in your life to motivate and challenge and most of all love you. Some one to stick with you through it all.
Wednesday, April 20, 2011
Living with Multiple Sclerosis
I suppose that in some ways it would be easier to tell you what life without MS is like. But then again, most of you that read this will know about that. It seems on some days that I almost cannot remember what it was like. I get up in the morning and think about waking up feeling healthy and whole. I believe I could take the daily changes of getting older. The aches and pains of arthritis. The advances of the degenerative disk disease. The bits of memory changes. We must all go through these things at some point in time.
Last evening I had the realization that there are so many cures and treatments that actually work for so many different diseases. The medications, treatments and literally 'experiments' for MS; only seem to mask the symptoms. I have known people that were cured, whose surgeries worked, whose medications overcame what they had been diagnosed with. Of all the people I have known, or read of, I have never encountered one that was 'cured' of MS. Therefore, those of us that have this dysfunction, and that is what it is, at this point in time, see no daylight at the end of the tunnel.
My tunnel began on the evening of December 3rd, 2000. I didn't know at that time that it was something other than a regular migraine; which I had been having since my early twenties. I was leaving work headed to a Christmas concert at the kid's high school. I had promised to help serve pizza to several hundred youth. Since they had been practicing for several days, they had been served pizza a couple times already. My daughter had requested I bring here some Mc Donalds food. So, being the over indulgent Mom that I some times was, I stopped and picked up a couple burgers then headed on to the school. I kept thinking that I would get thru the evening and head home to medication and the bed.
The following morning when I attempted to get out of bed, my legs didn't want to work. I fell to the floor, crawled to the bathroom, finally managed to stand up and get a shower. My legs hurt so bad. I thought may be it was just a pinched nerve since I had some pretty bad back issues. I went to the kitchen, made coffee, took another migraine pill, got the kids up to get ready for school. Several times while getting ready, my legs almost gave out. I thought that this was going to be a really fun day!
While driving to work, I was thinking that I had not had a headache this bad for quite a while. But I would go to work, perhaps wrap up some things and come back home early. This was not some thing that I usually did. One has to do what one has to do. By mid morning I was losing my balance. Several times I fell into the wall so hard I bruised my arms. I left work about an hour early and headed home.
Then next day was even worse. While driving the kids to school, I was getting worried about my vision. Several times I asked the kids if the vehicle on the road was going in front of me or was in the other lane coming at me. There seemed to be two of every thing. Now I was getting worried. But I made it to work. Of course, it was rather difficult to do much because of the vision problem.
On the third day, my boss decided I should really get to the doctor. All my co-workers were getting rather concerned. So about lunch time I too decided the pain, vision, and balance had to add up to something being really wrong. I went to the emergency room.
After a battery of blood tests, a Cat Scan, and several other tests; the ER doctor decided there was nothing wrong that several days of rest wouldn't cure. I took the work note by the office and went home to bed. Of course then I got up and picked up the kids from school, came home and made supper, cleaned up, did some laundry. You know, all those mom things.
The next morning being Saturday, I made some coffee and rested for a while. Then I decided that if this was from a pinched nerve, stress, or any such related thing, there was nothing like a long hot bath. I had a great tub at the time. One that you could just sink down in and stay until you were shrivelled up! So I filled it up with lots of bubbles and lobster boiling hot water.
This was definitly the wrong thing to do! Almost as soon as I was submerged, the pain that came was and still is, totally beyond any thing I have ever been through. Every nerve ending,and every inch of my skin was on fire. My muscles started contracting and spasming. I couldn't breathe. My head felt like it was busting wide open. Even my hair hurt.
I started screeming because I was afraid if I didn't get help, I would die right there. The kids and thier dad came running to the door. With help I was dried, dressed and driven to the ER part of the doctor's office.
Fortunately the doctor on duty was one that I have really liked and respected for a long time. He knew right away there was something wrong. He called on a Saturday and got me an appointment for the nuerologist on Monday morning at eight am. Then, not wanting to affect what ever was going on, he gave me a mild pain suppressant, and told me to get complete bed rest and no heat! He also went over the possabilities of what could be the problem. One of the things he kept stressing was MS.
Monday morning found me at the nuerologists office. This doctor sent me for an MRI almost immediately with instructions to come right back to his office. The report was to be read right away and called and emailed to him. Within several hours I was back in the exam room with the doctor being pretty sue that the diagnosis was Multiple Scluerosis. He wanted me to go to the University of Charlottsville for a second opinion. That appointment would take a week or so to get.
After being home for about two days, I had a second episode. It was almost like a surge of the first symptoms only worse. I could not even walk without some one on each side. So Iwas agian taken to the ER. I was admitted right away. They got the IV's going and started steroids. It seemed that these had the right effect and I was soon feeling a lot better. In a couple days I could walk on my own but with a cane. My balance was still terrible and my right side seemed to be drawn up and would not work the way I wanted it too.
I went to the appointment at the Charlottsville hospital. My parents had come down from Ohio to go over with us. We had to get a wheel chair for me to get around. When we finally got to the area we needed, I was xhausted! The nurse took me to the exam room and the doctor came in in a little bit of no time. After a brief exam, she went out and talked to those waiting for me. When she came back in she said that I needed to go to the admitting department. I actually asked her why! She said that she was not sending me home in the shape I was in. That some answers needed to be found and treatment started. Needless to say, I argued that I had a job to go to and that with Christmas just around the corner I still had shopping, decorating, and baking that needed to be done. I didn't win that discussion!
The next week and a half was a blur. There are things now that I am remembering that I had no clue then. My speech became unitelligable. People were not responding to what I was saying, making me repeat myself. the words that were in my head were not what was coming out. I became very frustrated and aggravated. I once again was needing someone on both sides just to get up to the bathroom. Turning over in the bed made my head spin because my balance was so bad.
I was sent for more MRI's, Cat Scan's and other tests. Blood drawing was so regular I just held out my arm when the techs came in. Doctors and resident students, nurses, therapists, came and went. Finally a second year resident student was studying one of the Cat Scans and noticed something that had been missed. The initial onset of the MS, had left a lesion so large and deep that it had caused a right sided stroke. Something else to deal with.
Needless to say I spent a little over a week in the hospital. Once the meds were regulated; I was starting to come around. I was getting a little stronger and gained more control of my right side. The doctors decided to let me go home on December 23rd.
Finally I was going home. But I had to wonder to what kind of quality of life. I was a nervous wreck and totally exhausted. It seemed like all I wanted to do was sleep. I guess that is what I needed. Sometimes it was very frustrating to not be able to do simple daily tasks. I coulnd't even carry a cup of coffee across the kitchen.
One day I finally just got fed up and decided that if I didn't get myself going, I would be stuck like this. So I started walking. I started out with the help of the kids and then friends that came by to visit. I made myself do the household chores and got back into things slowly. Every day was like a brand new start. Eventually things seemed to get a little easier and the medications were evening things out. The pain level reverted to an acceptable level. It has never completely gone away.
Of course through all this, I did a lot of studying and learning about MS. I researched the treatments, talked to others with the diagnosis; and slowly learned to deal with the issues that my life had now taken.
I realize that every day is different and there is never any assurance that a day will be a "good" or a "bad" one, or change in the middle. I am still learning that even the "bad" days can be ok. I just have to take a break, sit down, and spend a little time in the chair. I try very hard to make the most of the "good" days. There have been days that are absolutely amazing, and I treasure them dearly!
I sometimes wonder what turns my life might have taken if not for this invasion of my body. There are times when my mind does not want to accept the limitations that MS and the stroke have put on the physical aspects of life. I still tend to get some what frustrated when I can't do certain things. But I will do all I can, when I can, and be grateful for the memories.
In these writings, I hope to encourage all who read this to be strong no matter what life throws at you. Make a come back. Find somthing that challenges you to get strong again and keeps you going. Don't give up! Don't give in!
Last evening I had the realization that there are so many cures and treatments that actually work for so many different diseases. The medications, treatments and literally 'experiments' for MS; only seem to mask the symptoms. I have known people that were cured, whose surgeries worked, whose medications overcame what they had been diagnosed with. Of all the people I have known, or read of, I have never encountered one that was 'cured' of MS. Therefore, those of us that have this dysfunction, and that is what it is, at this point in time, see no daylight at the end of the tunnel.
My tunnel began on the evening of December 3rd, 2000. I didn't know at that time that it was something other than a regular migraine; which I had been having since my early twenties. I was leaving work headed to a Christmas concert at the kid's high school. I had promised to help serve pizza to several hundred youth. Since they had been practicing for several days, they had been served pizza a couple times already. My daughter had requested I bring here some Mc Donalds food. So, being the over indulgent Mom that I some times was, I stopped and picked up a couple burgers then headed on to the school. I kept thinking that I would get thru the evening and head home to medication and the bed.
The following morning when I attempted to get out of bed, my legs didn't want to work. I fell to the floor, crawled to the bathroom, finally managed to stand up and get a shower. My legs hurt so bad. I thought may be it was just a pinched nerve since I had some pretty bad back issues. I went to the kitchen, made coffee, took another migraine pill, got the kids up to get ready for school. Several times while getting ready, my legs almost gave out. I thought that this was going to be a really fun day!
While driving to work, I was thinking that I had not had a headache this bad for quite a while. But I would go to work, perhaps wrap up some things and come back home early. This was not some thing that I usually did. One has to do what one has to do. By mid morning I was losing my balance. Several times I fell into the wall so hard I bruised my arms. I left work about an hour early and headed home.
Then next day was even worse. While driving the kids to school, I was getting worried about my vision. Several times I asked the kids if the vehicle on the road was going in front of me or was in the other lane coming at me. There seemed to be two of every thing. Now I was getting worried. But I made it to work. Of course, it was rather difficult to do much because of the vision problem.
On the third day, my boss decided I should really get to the doctor. All my co-workers were getting rather concerned. So about lunch time I too decided the pain, vision, and balance had to add up to something being really wrong. I went to the emergency room.
After a battery of blood tests, a Cat Scan, and several other tests; the ER doctor decided there was nothing wrong that several days of rest wouldn't cure. I took the work note by the office and went home to bed. Of course then I got up and picked up the kids from school, came home and made supper, cleaned up, did some laundry. You know, all those mom things.
The next morning being Saturday, I made some coffee and rested for a while. Then I decided that if this was from a pinched nerve, stress, or any such related thing, there was nothing like a long hot bath. I had a great tub at the time. One that you could just sink down in and stay until you were shrivelled up! So I filled it up with lots of bubbles and lobster boiling hot water.
This was definitly the wrong thing to do! Almost as soon as I was submerged, the pain that came was and still is, totally beyond any thing I have ever been through. Every nerve ending,and every inch of my skin was on fire. My muscles started contracting and spasming. I couldn't breathe. My head felt like it was busting wide open. Even my hair hurt.
I started screeming because I was afraid if I didn't get help, I would die right there. The kids and thier dad came running to the door. With help I was dried, dressed and driven to the ER part of the doctor's office.
Fortunately the doctor on duty was one that I have really liked and respected for a long time. He knew right away there was something wrong. He called on a Saturday and got me an appointment for the nuerologist on Monday morning at eight am. Then, not wanting to affect what ever was going on, he gave me a mild pain suppressant, and told me to get complete bed rest and no heat! He also went over the possabilities of what could be the problem. One of the things he kept stressing was MS.
Monday morning found me at the nuerologists office. This doctor sent me for an MRI almost immediately with instructions to come right back to his office. The report was to be read right away and called and emailed to him. Within several hours I was back in the exam room with the doctor being pretty sue that the diagnosis was Multiple Scluerosis. He wanted me to go to the University of Charlottsville for a second opinion. That appointment would take a week or so to get.
After being home for about two days, I had a second episode. It was almost like a surge of the first symptoms only worse. I could not even walk without some one on each side. So Iwas agian taken to the ER. I was admitted right away. They got the IV's going and started steroids. It seemed that these had the right effect and I was soon feeling a lot better. In a couple days I could walk on my own but with a cane. My balance was still terrible and my right side seemed to be drawn up and would not work the way I wanted it too.
I went to the appointment at the Charlottsville hospital. My parents had come down from Ohio to go over with us. We had to get a wheel chair for me to get around. When we finally got to the area we needed, I was xhausted! The nurse took me to the exam room and the doctor came in in a little bit of no time. After a brief exam, she went out and talked to those waiting for me. When she came back in she said that I needed to go to the admitting department. I actually asked her why! She said that she was not sending me home in the shape I was in. That some answers needed to be found and treatment started. Needless to say, I argued that I had a job to go to and that with Christmas just around the corner I still had shopping, decorating, and baking that needed to be done. I didn't win that discussion!
The next week and a half was a blur. There are things now that I am remembering that I had no clue then. My speech became unitelligable. People were not responding to what I was saying, making me repeat myself. the words that were in my head were not what was coming out. I became very frustrated and aggravated. I once again was needing someone on both sides just to get up to the bathroom. Turning over in the bed made my head spin because my balance was so bad.
I was sent for more MRI's, Cat Scan's and other tests. Blood drawing was so regular I just held out my arm when the techs came in. Doctors and resident students, nurses, therapists, came and went. Finally a second year resident student was studying one of the Cat Scans and noticed something that had been missed. The initial onset of the MS, had left a lesion so large and deep that it had caused a right sided stroke. Something else to deal with.
Needless to say I spent a little over a week in the hospital. Once the meds were regulated; I was starting to come around. I was getting a little stronger and gained more control of my right side. The doctors decided to let me go home on December 23rd.
Finally I was going home. But I had to wonder to what kind of quality of life. I was a nervous wreck and totally exhausted. It seemed like all I wanted to do was sleep. I guess that is what I needed. Sometimes it was very frustrating to not be able to do simple daily tasks. I coulnd't even carry a cup of coffee across the kitchen.
One day I finally just got fed up and decided that if I didn't get myself going, I would be stuck like this. So I started walking. I started out with the help of the kids and then friends that came by to visit. I made myself do the household chores and got back into things slowly. Every day was like a brand new start. Eventually things seemed to get a little easier and the medications were evening things out. The pain level reverted to an acceptable level. It has never completely gone away.
Of course through all this, I did a lot of studying and learning about MS. I researched the treatments, talked to others with the diagnosis; and slowly learned to deal with the issues that my life had now taken.
I realize that every day is different and there is never any assurance that a day will be a "good" or a "bad" one, or change in the middle. I am still learning that even the "bad" days can be ok. I just have to take a break, sit down, and spend a little time in the chair. I try very hard to make the most of the "good" days. There have been days that are absolutely amazing, and I treasure them dearly!
I sometimes wonder what turns my life might have taken if not for this invasion of my body. There are times when my mind does not want to accept the limitations that MS and the stroke have put on the physical aspects of life. I still tend to get some what frustrated when I can't do certain things. But I will do all I can, when I can, and be grateful for the memories.
In these writings, I hope to encourage all who read this to be strong no matter what life throws at you. Make a come back. Find somthing that challenges you to get strong again and keeps you going. Don't give up! Don't give in!
Monday, April 11, 2011
Gypsy at Heart
I finally get to go and be that gypsy I have always felt inside and never got to let out. My wandering spirit shall wander. My inquiring mind shall experience and absorb. My eyes will finally see all those great places I have only seen in pictures. I will get to re-experience many things I saw and did as a child. I wonder what the difference will be seeing them as an adult. The appreciation of things, places, and people; I am sure be quite different.
There have been times in my life when I just wanted to pack up the vehicle and hit the road with no destination in mind. The thought of how far will this tank of gas take me. Where will I end up? What will I see? Who will I meet? I guess to some people that is a scary thought, not to have a complete plan. My thought is if you have too complete of a plan, there is no room for deviation. If I am driving down the road and want to stop and see some thing; then I want to stop. So many times I have had to drive right by a place that really seemed interesting to me. No more!
I wonder how many opportunties have been missed because a person was to busy to stop. How many paths might have taken a different turn if they had pulled into that little shop, senic route, old restraunt, and a lot of other places. How many lifes would have been changed? I guess I am just full of questions about the road less traveled. The intrigue of the unknown facinates me.
Getting ready to take this trip knowing that the MS could flare at any time, is really urging me to get on with it. I don't know how much time I have to do the things I want to do. Or how long I will be in shape to do them. I feel kind of like I am in a race with time. Some days getting up and around is so hard. Then the rest of the day is great. Sometimes the mornings are great and the rest of the day is pretty tough. For right now, most of the days are all right. As with any chronic disease, a person has to learn to get along. You just learn to tolerate certain things.
So, I want to take this trip and pack as much life into it as possible. I want to stand at the the Grand Canyon rim, take walks in the desert, do all the rock climbing I can, get married, meet people; not neccessarily in this order. That is the beauty of not having a fixed plan. You can change the details and not mess any thing up!
I am really excited to let this gypsy out and go for it! Life is sweet and there is so much more than what is here in front of me. I will go see, explore, and experiece. I am thankful to have some one to share this desire of getting out and seeing the world. Some one who is not afraid to go outside his comfort zone. Some one who looks after me and just wants me to have a good life!
There have been times in my life when I just wanted to pack up the vehicle and hit the road with no destination in mind. The thought of how far will this tank of gas take me. Where will I end up? What will I see? Who will I meet? I guess to some people that is a scary thought, not to have a complete plan. My thought is if you have too complete of a plan, there is no room for deviation. If I am driving down the road and want to stop and see some thing; then I want to stop. So many times I have had to drive right by a place that really seemed interesting to me. No more!
I wonder how many opportunties have been missed because a person was to busy to stop. How many paths might have taken a different turn if they had pulled into that little shop, senic route, old restraunt, and a lot of other places. How many lifes would have been changed? I guess I am just full of questions about the road less traveled. The intrigue of the unknown facinates me.
Getting ready to take this trip knowing that the MS could flare at any time, is really urging me to get on with it. I don't know how much time I have to do the things I want to do. Or how long I will be in shape to do them. I feel kind of like I am in a race with time. Some days getting up and around is so hard. Then the rest of the day is great. Sometimes the mornings are great and the rest of the day is pretty tough. For right now, most of the days are all right. As with any chronic disease, a person has to learn to get along. You just learn to tolerate certain things.
So, I want to take this trip and pack as much life into it as possible. I want to stand at the the Grand Canyon rim, take walks in the desert, do all the rock climbing I can, get married, meet people; not neccessarily in this order. That is the beauty of not having a fixed plan. You can change the details and not mess any thing up!
I am really excited to let this gypsy out and go for it! Life is sweet and there is so much more than what is here in front of me. I will go see, explore, and experiece. I am thankful to have some one to share this desire of getting out and seeing the world. Some one who is not afraid to go outside his comfort zone. Some one who looks after me and just wants me to have a good life!
Tuesday, March 29, 2011
Some Friends I've Had
I have been very fortunate over the years in the friends I have had. Some of these became more like aquaintances over time; some became like second family. And others sadly enough moved on to places unknown.
Some times upon meeting a person it seems like you just know right away that they will be a great friend. Some times it becomes obvious that there just isn't a connection and you will just be aquaintances. Then there are the ones that kind of grow on you over time. I think that these friends are the ones that make a lasting impression and difference in your life over all. It takes time to get to know them and them to know you.
You just know in your heart that if you ever need any thing, they are there for you. They are the kind that open their door, invite you in, and offer what ever comfort is needed. Some times just a place to sit and visit for a while before driving the rest of the long way home. Some times a snack and cup of coffee, and some times they just start pulling out the kettles and fixing a full blown meal!
Then there are the few friends that you make in your life time that you liked right off; then they really grew on you over time. You can agree to disagree. You have serious converations about things that really matter. You have discussions and debates. You have some awesome laughing sessions until your sides ache! You give each other nicknames. Some stick, and others pass depending on the situation. You give each other hugs, handshakes, and a hard time. You challenge and encourage each other.
I wanted to write this in honor of my friend Mike Fisher. If you ever wanted a friend that is described in the above paragraph, he is the one. I call him "Mr. Fisher", he has given me several nicknames. The one that has stuck is "Miss Pink Pants". Due to my favorite pair of climbing pants.
There have been cookies, brownies, and coffee, skillet tacos, fresh veggies, and any manner of other treats. Conversations around the kitchen table, sometimes leading to; "lets go to the living room and sit on some comfortable chairs". At times there is music playing,other times some good old videos, and of course the rock climbing videos.
Some of the best times though are at the crag. He is one of the hardest climbers I know. He also likes to put up some "moderate routes". Of course when he is done with them, they have become some thing that I know I will not be climbing! Of course this isn't always true. There are several that are right up my alley and have become favorites of mine. But of course I have to give him a hard time. That is part of our friendship after all!
Along with my Michael, (I say it this way so as not to confuse you), we have been though many a fine day at the craig. And I introduce this line of thought because I met Mr. Fisher because he has been friends and a climbing partner with Michael for years before I came on the scene.
Some other fine times have been had camping. Once to his astonishment, Michael and I had to sleep in the open, because the tent didn't make it to the truck. It was a beautiful night out and sleeping under the stars was wonderful. Then to get up the next morning, break camp and go climbing. The next trip didn't turn out quite like we planned when the weather went bad. Soon after crawling in our tents the rain poured down. The following morning it was still drenching every thing. Reguardless, Michael fixed a hot breakfeast and coffee, with Mr. Fisher looking out of the partially unzipped flap of his tent. Then we packed up and called it a day!
So phone calls are regularly made back and forth; some just for greetings, some for long conversations. A lot of them are for making plans. The usual question of," what are you up to today?" Followed by, "what you got in mind?"
No matter the response, you know you are either being thought of, or are going to get together to do some serious climbing or just hang out. No matter the plan, you know you are in for a good time with a good friend!
Some times upon meeting a person it seems like you just know right away that they will be a great friend. Some times it becomes obvious that there just isn't a connection and you will just be aquaintances. Then there are the ones that kind of grow on you over time. I think that these friends are the ones that make a lasting impression and difference in your life over all. It takes time to get to know them and them to know you.
You just know in your heart that if you ever need any thing, they are there for you. They are the kind that open their door, invite you in, and offer what ever comfort is needed. Some times just a place to sit and visit for a while before driving the rest of the long way home. Some times a snack and cup of coffee, and some times they just start pulling out the kettles and fixing a full blown meal!
Then there are the few friends that you make in your life time that you liked right off; then they really grew on you over time. You can agree to disagree. You have serious converations about things that really matter. You have discussions and debates. You have some awesome laughing sessions until your sides ache! You give each other nicknames. Some stick, and others pass depending on the situation. You give each other hugs, handshakes, and a hard time. You challenge and encourage each other.
I wanted to write this in honor of my friend Mike Fisher. If you ever wanted a friend that is described in the above paragraph, he is the one. I call him "Mr. Fisher", he has given me several nicknames. The one that has stuck is "Miss Pink Pants". Due to my favorite pair of climbing pants.
There have been cookies, brownies, and coffee, skillet tacos, fresh veggies, and any manner of other treats. Conversations around the kitchen table, sometimes leading to; "lets go to the living room and sit on some comfortable chairs". At times there is music playing,other times some good old videos, and of course the rock climbing videos.
Some of the best times though are at the crag. He is one of the hardest climbers I know. He also likes to put up some "moderate routes". Of course when he is done with them, they have become some thing that I know I will not be climbing! Of course this isn't always true. There are several that are right up my alley and have become favorites of mine. But of course I have to give him a hard time. That is part of our friendship after all!
Along with my Michael, (I say it this way so as not to confuse you), we have been though many a fine day at the craig. And I introduce this line of thought because I met Mr. Fisher because he has been friends and a climbing partner with Michael for years before I came on the scene.
Some other fine times have been had camping. Once to his astonishment, Michael and I had to sleep in the open, because the tent didn't make it to the truck. It was a beautiful night out and sleeping under the stars was wonderful. Then to get up the next morning, break camp and go climbing. The next trip didn't turn out quite like we planned when the weather went bad. Soon after crawling in our tents the rain poured down. The following morning it was still drenching every thing. Reguardless, Michael fixed a hot breakfeast and coffee, with Mr. Fisher looking out of the partially unzipped flap of his tent. Then we packed up and called it a day!
So phone calls are regularly made back and forth; some just for greetings, some for long conversations. A lot of them are for making plans. The usual question of," what are you up to today?" Followed by, "what you got in mind?"
No matter the response, you know you are either being thought of, or are going to get together to do some serious climbing or just hang out. No matter the plan, you know you are in for a good time with a good friend!
Monday, March 28, 2011
Escaping the Box
Years ago, as a very young child I started to have glimpses out side the box. It seemed like there was so much of the world that was not available because of the labels, or stygma placed upon these things. There were places one did not go or people one did not associate with.
I could never quite grasp this, as I was brought up in a Christian home. At Church and other various activities, I was taught that you should "love your nieghbor as yourself." And that you were to take the Gospel to the world. Well, to me it never seemed right that you could live in this little bubble looking out. How were you to accomplish these things if you didn't get out and get involved with people who were not of your own. I understood the whole mission idea of taking some time off from your daily duties and handing out food or clothing. Of making boxes or care packages and sending them to some poor country. Of going to another country and helping to build missionary houses, Churches, schools and clinics.
When I was a young girl, I remember going with my Mom to the migrant workers area and helping to sort out donated clothes. I recall those workers coming in and getting clothing and other household items. I remember Mom and Dad going on various mission trips here and there in other countries.
At that time I don't ever remember going to any of thier actual living places. I don't remember ever being involved in any contact with "those people". And it could be that I just don't remember. But I think if it had happened, it would have stayed with me.
Then when I was a teenager, we went as a family to Nicaragua. We helped to build clinics, schools, drill wells, teach health, hygiene, and basic reading and writing. We also built Churches. This included training Pastors from thier own communities to carry on the positions. We made friends. Good friends. We were as involved in the communities as if we had come from there.
Here I felt like I finally saw the difference between giving the supplies, and actually being invloved. It is easy to donate tings that you are done with. Such as clothing and household things. It is easy to write a check. It is easy to sponser some one else. It is not so easy being right in the middle. To actually get to know the people, make friends, and try to make a difference in thier lives. To make things better. Education of one sort or the other doesn't need to totally change thier customs or way of life. Improvement isn't always about taking away, but adding too.
When I started to see glimpses of what was outside the box, I just wanted to see more. I wanted to understand why and how other people lived. I wanted to know what else was possible for my life. I wondered how on earth these people had survived all this time without the constraints put on them by others. I wanted to know how they could get by and still be happy, have lots of love, and feel they had a good life. When did life become so defined by certain groups of people that it had to be lived a certain way or you were just living so wrong? I understand that if you are going to live in the village, you have to live the way the village does in order for it to survive. So, I choose to live outside the box, and may be just visit once in a while.
I have chose a very different path. I want to live in the midst of mankind;live wherever I need to be at the time, in the best manner possible. I want to try not to be too needy, but help those in need. To keep my head up, my eyes open, and my heart full of love for my fellow man. I want to be an inspiration, a shoulder to lean on, and a smile to brighten a day for others.
I could never quite grasp this, as I was brought up in a Christian home. At Church and other various activities, I was taught that you should "love your nieghbor as yourself." And that you were to take the Gospel to the world. Well, to me it never seemed right that you could live in this little bubble looking out. How were you to accomplish these things if you didn't get out and get involved with people who were not of your own. I understood the whole mission idea of taking some time off from your daily duties and handing out food or clothing. Of making boxes or care packages and sending them to some poor country. Of going to another country and helping to build missionary houses, Churches, schools and clinics.
When I was a young girl, I remember going with my Mom to the migrant workers area and helping to sort out donated clothes. I recall those workers coming in and getting clothing and other household items. I remember Mom and Dad going on various mission trips here and there in other countries.
At that time I don't ever remember going to any of thier actual living places. I don't remember ever being involved in any contact with "those people". And it could be that I just don't remember. But I think if it had happened, it would have stayed with me.
Then when I was a teenager, we went as a family to Nicaragua. We helped to build clinics, schools, drill wells, teach health, hygiene, and basic reading and writing. We also built Churches. This included training Pastors from thier own communities to carry on the positions. We made friends. Good friends. We were as involved in the communities as if we had come from there.
Here I felt like I finally saw the difference between giving the supplies, and actually being invloved. It is easy to donate tings that you are done with. Such as clothing and household things. It is easy to write a check. It is easy to sponser some one else. It is not so easy being right in the middle. To actually get to know the people, make friends, and try to make a difference in thier lives. To make things better. Education of one sort or the other doesn't need to totally change thier customs or way of life. Improvement isn't always about taking away, but adding too.
When I started to see glimpses of what was outside the box, I just wanted to see more. I wanted to understand why and how other people lived. I wanted to know what else was possible for my life. I wondered how on earth these people had survived all this time without the constraints put on them by others. I wanted to know how they could get by and still be happy, have lots of love, and feel they had a good life. When did life become so defined by certain groups of people that it had to be lived a certain way or you were just living so wrong? I understand that if you are going to live in the village, you have to live the way the village does in order for it to survive. So, I choose to live outside the box, and may be just visit once in a while.
I have chose a very different path. I want to live in the midst of mankind;live wherever I need to be at the time, in the best manner possible. I want to try not to be too needy, but help those in need. To keep my head up, my eyes open, and my heart full of love for my fellow man. I want to be an inspiration, a shoulder to lean on, and a smile to brighten a day for others.
Tuesday, March 22, 2011
Life inside the box can work for some people. There are people that need the structure to make them comfortable and keep them on track. Some folks just cannot function without certain constraints. They need rules to follow. I think I just summed up what I was going to write. They need to follow, not lead. It keeps them from having to act on any thing they might actually think. It is all right to think about things; but having to act upon these things would mean they might have to change things in thier life or life style. Change can be very upsetting to a lot of people.
I grew up inside the box. There were certain ways to do certain things. And you did not question why. To question why made one think. I aways wondered why. I have a deep need to be able to make sense of why things are the way they are. Some times the answers were just not addressed. The response often was;" because that is just the way it is".
The funny thing now is that I see how along the way, so many of the rules have changed. I guess it is a kind of evolution. Some times I think that those involved do not even realize that the rules have changed. What was not right then, is right now. Maybe with some twists, you know, it depends on the situation and also who is involved. What is right or wrong for one person may not be for another. I don't even know where the boundaries are any more!
Let me give you a simple example. When I was young there were rules about the right and wrong kind of clothes to wear. It was not acceptable to wear jewlry, make up, fingernail polish, for women to have short hair; the list goes on and on. Now, the only thing that really matters is to be modest in your dress. In other words, don't exspose to much skin. I used to get ready to go back to the area I grew up in by taking out earings, removing nail polish, and making sure I didn't have on any makeup. Then I would pack clothing with what I was sure wouldn't offend any one. Now when I go back there, I pretty much go as I would here at home and there are no worries. I think they have pretty much just acctepted the idea that I am different from them. Of course I know that I am well prayed for at the same time!
One of the other corners of the box is about one's spiritual/religious life. To be a true Christian, one must belong to a Church. Not just belong, but to be seriously involved. That would be at least one service on Sunday, and probably at least one function during the week. This keeps one's soul firmly rooted. You have others that can keep you guided on the right path, and in turn you can help guide them. They call it accountability. If you are not involved, you are probably not going the right way. Of course this right way I am talking about will vary from Church to Church. I have found that there is quite the difference from one organization to other. And there you have it. Organization. Usually in a building that is itentified as a Church building. And with in the walls of this building, there is a group of people that make the decisions and tell th erest what they should do and how to live thier lives. They tell them what is a sin and what is the Christian way to live. So, if I don't do what they say, or live they way they have out lined, then my way of life becomes questionable.
Well, I have to say that I find this quite confining. I think it is the way a caged animal must feel. My entire being screems out. My soul feels like it wants to burst and expand. That there is some thing out there that I am not getting to experience. My life and my spirituality is my own responsibility. And I believe, it should be far more private.
I guess that until I actually left my childhood home, I did not even realize that I had been living in the box. I often wondered what was out there in the world. I really thought it to be a very dangerous place. The temptations would be more than a person could stand. But how do you know what you can stand against and for if you don't go out and live? How do you know what you are truely made of? And in the quest for these answers, find out who you really are. I didn't want to be just like the other sheep, blindly grouping together with the others against the coming of the big bad wolf; but to be who I was made to be.
So, straining against the edges, breaking free through a tear in the corner, I find myself outside the box. Living large, exploring the world. Living the way I feel my heart is called to live.
I grew up inside the box. There were certain ways to do certain things. And you did not question why. To question why made one think. I aways wondered why. I have a deep need to be able to make sense of why things are the way they are. Some times the answers were just not addressed. The response often was;" because that is just the way it is".
The funny thing now is that I see how along the way, so many of the rules have changed. I guess it is a kind of evolution. Some times I think that those involved do not even realize that the rules have changed. What was not right then, is right now. Maybe with some twists, you know, it depends on the situation and also who is involved. What is right or wrong for one person may not be for another. I don't even know where the boundaries are any more!
Let me give you a simple example. When I was young there were rules about the right and wrong kind of clothes to wear. It was not acceptable to wear jewlry, make up, fingernail polish, for women to have short hair; the list goes on and on. Now, the only thing that really matters is to be modest in your dress. In other words, don't exspose to much skin. I used to get ready to go back to the area I grew up in by taking out earings, removing nail polish, and making sure I didn't have on any makeup. Then I would pack clothing with what I was sure wouldn't offend any one. Now when I go back there, I pretty much go as I would here at home and there are no worries. I think they have pretty much just acctepted the idea that I am different from them. Of course I know that I am well prayed for at the same time!
One of the other corners of the box is about one's spiritual/religious life. To be a true Christian, one must belong to a Church. Not just belong, but to be seriously involved. That would be at least one service on Sunday, and probably at least one function during the week. This keeps one's soul firmly rooted. You have others that can keep you guided on the right path, and in turn you can help guide them. They call it accountability. If you are not involved, you are probably not going the right way. Of course this right way I am talking about will vary from Church to Church. I have found that there is quite the difference from one organization to other. And there you have it. Organization. Usually in a building that is itentified as a Church building. And with in the walls of this building, there is a group of people that make the decisions and tell th erest what they should do and how to live thier lives. They tell them what is a sin and what is the Christian way to live. So, if I don't do what they say, or live they way they have out lined, then my way of life becomes questionable.
Well, I have to say that I find this quite confining. I think it is the way a caged animal must feel. My entire being screems out. My soul feels like it wants to burst and expand. That there is some thing out there that I am not getting to experience. My life and my spirituality is my own responsibility. And I believe, it should be far more private.
I guess that until I actually left my childhood home, I did not even realize that I had been living in the box. I often wondered what was out there in the world. I really thought it to be a very dangerous place. The temptations would be more than a person could stand. But how do you know what you can stand against and for if you don't go out and live? How do you know what you are truely made of? And in the quest for these answers, find out who you really are. I didn't want to be just like the other sheep, blindly grouping together with the others against the coming of the big bad wolf; but to be who I was made to be.
So, straining against the edges, breaking free through a tear in the corner, I find myself outside the box. Living large, exploring the world. Living the way I feel my heart is called to live.
Friday, March 18, 2011
A Precious Gift
I want to share a gift with you. It is one that I treasure very much. It is not a gift that you leave in the package to store on a shelf in the back room closet. It is not one to just pull out several times a year; to look at, think about where it came from, who was involved, then put it away to collect dust and cobwebs.
This precious gift is one of the many memories that I think about and strive to use every day as inspiration as to how I desire to have my time spent. If you think about it, "time spent" is some thing that is used up, gone, something you can't have back. But it can be used as a background. A template if you will for the next block of time.
Last week I had a truely aweful Friday. Ususally Fridays are a day to look forward to. The begining of the weekend. For me, time to plan my time out of doors. Cooking (so I don't have to the rest of the weekend), catching up laundry, and making phone calls to plan get togethers. Not this day. Nothing was going according to my plans. Actually, nothing was going including me! My body decided to have a breakdown. I guess the MS wanted to let me know it was still here in full force. There is nothing to do when that happens, but lay back and let it have it's way.
Then came Saturday morning. How wonderful to wake up and feel so completely different from one day to the next. I felt so good. I knew then that I needed to get out and do all that I could do!
I fixed up some snacks, drinks, and organized my back pack. Then Michael and I loaded up the truck and away we went.
We arrived at the craig to find some other friends had just arrived. It was an unexpected suprise. We strapped on our packs and headed up the trail. I was still feeling so amazing!
It is so hard to describe the feeling of being able to get out after a day like the previous one. When all of the muscles work the way you want them too, when there is very little pain, when the coordination, balance, and thought process all work as they should.
I look around at the beautiful area, feel the cool breeze, inhale the wonderful clean country air, and am so grateful for this gift. I know that the memory of this day will stay with me to give me hope for the next one.
Walking up the trail is not hard today. I am keeping my balance, not stumbling around, not even short of breath. I feel strong, in control of myself once again.
We stop to watch our friends get on a route they have not had the opportunity to climb before. They are both very strong climbers. They say it is a very enjoyable route. It was fun and inspiring to watch them.
Since I have now been inspired, it is time to go get on the rock ourselves. Michael decides we will get started on a route that is one of my favorites. He leads, putting up the draws, clipping the anchors. I am feeling very confident and am in my peaceful place . I top rope up and clean the gear with out any trouble at all. I feel graceful and at ease.
We do a couple more routes that day. Both of them are ones that I have had trouble with and tend to struggle though. This day, I have been given the inner strength to get up both. But I must say that the last one took all that I had in me. When Michael lowered me to the ground, I found I was shaking all over, laughing with the excitement of having completed the climb reguardless of the energy it took! It did take the very last bit of energy that I had.
After a snack and some juice, I got all my gear loaded in my pack. I was getting ready to strap up and found that I was going to have to rest a while before heading down the trail. I was still trmebling from head to foot. We sat dawn for a little while and just enjoyed being out under the blue sky. Finally the shaking stopped and I decided I was ready to head down the trail.
What a wonderful day! Going from not being able to pour a glass of tea, to hiking, carrying a backpack, and rock climbing. A day to remember. A day to inspire. A day of hope. A day to carry in my heart!
Even though the bad days come, and I know that they will; there also will be days like this. If I can give you one gift in your life, it would be this. Do not to sit and worry that life has handed you trials, hard, difficult times. Maybe pain, maybe confusion, maybe sorrow. Get out of your chair. Go do something. Challenge yourself. It doesn't have to be much. There are times and situations that limit ones ability to do certain things. But you don't know what you can do, until you try. And I will tell you that nature has a way of healing. Even if you just take a chair and sit outside for a while. The next day, take your chair a little further. Find a different place, different scenery, get up and walk around a little, use a walking stick if you need to (I do), Get a bird guide book and binoculars. Maybe get a fishing license. Plant some flowers.
Give yourself a precious gift. If you wait for some one else to deliver you from your situation, you will be waiting a long time. This is one that others can and will help you with, but you must decide to give it to yourself. I hope and pray that you will choose to live and not let life go by!
This precious gift is one of the many memories that I think about and strive to use every day as inspiration as to how I desire to have my time spent. If you think about it, "time spent" is some thing that is used up, gone, something you can't have back. But it can be used as a background. A template if you will for the next block of time.
Last week I had a truely aweful Friday. Ususally Fridays are a day to look forward to. The begining of the weekend. For me, time to plan my time out of doors. Cooking (so I don't have to the rest of the weekend), catching up laundry, and making phone calls to plan get togethers. Not this day. Nothing was going according to my plans. Actually, nothing was going including me! My body decided to have a breakdown. I guess the MS wanted to let me know it was still here in full force. There is nothing to do when that happens, but lay back and let it have it's way.
Then came Saturday morning. How wonderful to wake up and feel so completely different from one day to the next. I felt so good. I knew then that I needed to get out and do all that I could do!
I fixed up some snacks, drinks, and organized my back pack. Then Michael and I loaded up the truck and away we went.
We arrived at the craig to find some other friends had just arrived. It was an unexpected suprise. We strapped on our packs and headed up the trail. I was still feeling so amazing!
It is so hard to describe the feeling of being able to get out after a day like the previous one. When all of the muscles work the way you want them too, when there is very little pain, when the coordination, balance, and thought process all work as they should.
I look around at the beautiful area, feel the cool breeze, inhale the wonderful clean country air, and am so grateful for this gift. I know that the memory of this day will stay with me to give me hope for the next one.
Walking up the trail is not hard today. I am keeping my balance, not stumbling around, not even short of breath. I feel strong, in control of myself once again.
We stop to watch our friends get on a route they have not had the opportunity to climb before. They are both very strong climbers. They say it is a very enjoyable route. It was fun and inspiring to watch them.
Since I have now been inspired, it is time to go get on the rock ourselves. Michael decides we will get started on a route that is one of my favorites. He leads, putting up the draws, clipping the anchors. I am feeling very confident and am in my peaceful place . I top rope up and clean the gear with out any trouble at all. I feel graceful and at ease.
We do a couple more routes that day. Both of them are ones that I have had trouble with and tend to struggle though. This day, I have been given the inner strength to get up both. But I must say that the last one took all that I had in me. When Michael lowered me to the ground, I found I was shaking all over, laughing with the excitement of having completed the climb reguardless of the energy it took! It did take the very last bit of energy that I had.
After a snack and some juice, I got all my gear loaded in my pack. I was getting ready to strap up and found that I was going to have to rest a while before heading down the trail. I was still trmebling from head to foot. We sat dawn for a little while and just enjoyed being out under the blue sky. Finally the shaking stopped and I decided I was ready to head down the trail.
What a wonderful day! Going from not being able to pour a glass of tea, to hiking, carrying a backpack, and rock climbing. A day to remember. A day to inspire. A day of hope. A day to carry in my heart!
Even though the bad days come, and I know that they will; there also will be days like this. If I can give you one gift in your life, it would be this. Do not to sit and worry that life has handed you trials, hard, difficult times. Maybe pain, maybe confusion, maybe sorrow. Get out of your chair. Go do something. Challenge yourself. It doesn't have to be much. There are times and situations that limit ones ability to do certain things. But you don't know what you can do, until you try. And I will tell you that nature has a way of healing. Even if you just take a chair and sit outside for a while. The next day, take your chair a little further. Find a different place, different scenery, get up and walk around a little, use a walking stick if you need to (I do), Get a bird guide book and binoculars. Maybe get a fishing license. Plant some flowers.
Give yourself a precious gift. If you wait for some one else to deliver you from your situation, you will be waiting a long time. This is one that others can and will help you with, but you must decide to give it to yourself. I hope and pray that you will choose to live and not let life go by!
Thursday, March 17, 2011
Taking the Bad With the Good
It seems that my body is determined to betray me when I least expect it. I try my best to accept that I have MS but it that does not have me. Most days I feel pretty good. There is the usual stiffness and achy joints, and a little muscle soreness. Of course any one person that has done any work in thier lives will come to this point. Some of that has to do with the degenerative disk disease and arthritis.
Last Thursday night, I didn't get any solid sleep time at all. As the night went on, I started feeling worse and worse. The pain became so intense that even laying down hurt. It seemed like putting pressure or wieght on any body part was not going to work. So I was up and down trying to get some relief. Even the ibuprofen was not helping. I don't think I have had that intensity of nerve pain for almost two years. And for that I spent four days in the hospital. I really did not want to do that again. I hate being on pain medications. Even though they certainly help the pain, they don't take away the reason for it. So, it is just a temporary cover-up. Then a person has to spend so much time trying to get off the medications. Because if you just keep taking the stuff, your body soon stops reacting to it then you have to find something else that works. I have been on so many different pain and nerve blocking meds. Some times the side effects are not worth the little good you get from them.
Friday morning finally came. The sun was up, the sky was clear. It would be a great day to be outside. Apparently this was not going to happen for me. As it turned out, it was not going to be a good day at all!
I have to say I really do hate days like that. One of the worst things for my spirit, is to have to ask some one to do simple things for me. I am a very independant person. I learned a long time ago that it is better to be able to do for myself than to depend on another person. Most of the time I have tried to depend on some one, they end up leaving my life for one reason or another. It is wonderful to have some one that you can depend upon; knowing that if some thing happens you can go on. Being strong emotionally, spiritually, and mentally has been something I have been rather proud of. I suppose that is one reason I am able to get through the days that are like that Friday. I know that it will pass and better days are coming. What is hard, is knowing that there will be more and more of the bad days to come.
Even walking to the kitchen or bathroom was an ordeal by ten o'clock in the morning. As the day went on I was not even able to hold a book up. My arms started with muscle spasms so bad I had to lay my book on the pillow in front of me. I couldn't even stand to touch my skin it hurt so badly. I had to put on clothes that didn't have waist bands or anything tight about them.
The only thing I can compare the feeling to is an electrical shock. I remember as a kid we used to take those fuzzy long grasses and touch the electric fence around the cow field. If you have ever done that, think about having that sensation through your entire body all day long. I usually have that vague feeling any how, it is subdued by taking medication three times a day.
Multiple Scluerosis is a life altering disease. Even though for the most part I look and act completely normal, there are things going on in my body that others can not see. Since I usually go on like there is nothing wrong, people do not realize what I am feeling. I do not want to let this disease take over my life! But there are times, days, weeks, when I simply can not cover up that I am not in control of my body.
I think that the worst of it is when my memory and cognitive skills are out of wack. Sometimes I can not remember what I was doing or how to do things I have spent my life doing. Sometimes I can not remember something that I just did the day before. It can get very frustrating!
When I can't even hold the tea pitcher to pour my own drink, or even carry the glass from one room to another because I can't hold it without spilling.
When I am walking down the short hall to the bathroom and my balance is so bad I am falling into the wall bruising my arms and shoulders.
This particular Friday was very bad. I had a very hard time not picking up the phone and calling for anambulance to take me to the hospital. It gets very discouraging to feel this way. I felt very helpless. Some times I just want to give up. I could you know. I could just let my body give into the disease. Then I would be put in a nursing home, set up on pain killers, (good ones too!), every bodily need taken care of, and not have to do a thing. I wonder some times how much quicker things would progress and get it over with. Then I think about what my mind would become laying there with nothing to do. Who would come to see me? Who would take care of me? What kind of care would I have? Is this what my life has come too? What did my life mean?
Good days are like a precious gift to me. I want to live life to the fullest. Some people have asked me why I do the things I do. Like rock climbing, hiking, exploring. Living life on the edge. Taking one day at a time. Not really planning for the future. I only have today. I do not know what tomorrow will bring. I do not know what my body will do tomorrow. But I know how I feel today. I know that I can get things done.
Hopefully, by keeping myself strong, in shape, being active, I will be able to delay the inevitable. I will do what ever I can to keep on living as if there was no tomorrow. I will not just sit down and give up! There will still be plenty more days of "what's next". One of my favorite sayings.
I do not want this to be discouraging to any one, I want my life to be an inspiration. This is just to let you know, it is all right to have a bad day and acknowledge it to be so. That way, when you have a good day or a great day, you can enjoy it to the fullest! Besides, the next post will be about the Saturday and Sunday after this bad day. They where two of the best days I had had for a while!
Last Thursday night, I didn't get any solid sleep time at all. As the night went on, I started feeling worse and worse. The pain became so intense that even laying down hurt. It seemed like putting pressure or wieght on any body part was not going to work. So I was up and down trying to get some relief. Even the ibuprofen was not helping. I don't think I have had that intensity of nerve pain for almost two years. And for that I spent four days in the hospital. I really did not want to do that again. I hate being on pain medications. Even though they certainly help the pain, they don't take away the reason for it. So, it is just a temporary cover-up. Then a person has to spend so much time trying to get off the medications. Because if you just keep taking the stuff, your body soon stops reacting to it then you have to find something else that works. I have been on so many different pain and nerve blocking meds. Some times the side effects are not worth the little good you get from them.
Friday morning finally came. The sun was up, the sky was clear. It would be a great day to be outside. Apparently this was not going to happen for me. As it turned out, it was not going to be a good day at all!
I have to say I really do hate days like that. One of the worst things for my spirit, is to have to ask some one to do simple things for me. I am a very independant person. I learned a long time ago that it is better to be able to do for myself than to depend on another person. Most of the time I have tried to depend on some one, they end up leaving my life for one reason or another. It is wonderful to have some one that you can depend upon; knowing that if some thing happens you can go on. Being strong emotionally, spiritually, and mentally has been something I have been rather proud of. I suppose that is one reason I am able to get through the days that are like that Friday. I know that it will pass and better days are coming. What is hard, is knowing that there will be more and more of the bad days to come.
Even walking to the kitchen or bathroom was an ordeal by ten o'clock in the morning. As the day went on I was not even able to hold a book up. My arms started with muscle spasms so bad I had to lay my book on the pillow in front of me. I couldn't even stand to touch my skin it hurt so badly. I had to put on clothes that didn't have waist bands or anything tight about them.
The only thing I can compare the feeling to is an electrical shock. I remember as a kid we used to take those fuzzy long grasses and touch the electric fence around the cow field. If you have ever done that, think about having that sensation through your entire body all day long. I usually have that vague feeling any how, it is subdued by taking medication three times a day.
Multiple Scluerosis is a life altering disease. Even though for the most part I look and act completely normal, there are things going on in my body that others can not see. Since I usually go on like there is nothing wrong, people do not realize what I am feeling. I do not want to let this disease take over my life! But there are times, days, weeks, when I simply can not cover up that I am not in control of my body.
I think that the worst of it is when my memory and cognitive skills are out of wack. Sometimes I can not remember what I was doing or how to do things I have spent my life doing. Sometimes I can not remember something that I just did the day before. It can get very frustrating!
When I can't even hold the tea pitcher to pour my own drink, or even carry the glass from one room to another because I can't hold it without spilling.
When I am walking down the short hall to the bathroom and my balance is so bad I am falling into the wall bruising my arms and shoulders.
This particular Friday was very bad. I had a very hard time not picking up the phone and calling for anambulance to take me to the hospital. It gets very discouraging to feel this way. I felt very helpless. Some times I just want to give up. I could you know. I could just let my body give into the disease. Then I would be put in a nursing home, set up on pain killers, (good ones too!), every bodily need taken care of, and not have to do a thing. I wonder some times how much quicker things would progress and get it over with. Then I think about what my mind would become laying there with nothing to do. Who would come to see me? Who would take care of me? What kind of care would I have? Is this what my life has come too? What did my life mean?
Good days are like a precious gift to me. I want to live life to the fullest. Some people have asked me why I do the things I do. Like rock climbing, hiking, exploring. Living life on the edge. Taking one day at a time. Not really planning for the future. I only have today. I do not know what tomorrow will bring. I do not know what my body will do tomorrow. But I know how I feel today. I know that I can get things done.
Hopefully, by keeping myself strong, in shape, being active, I will be able to delay the inevitable. I will do what ever I can to keep on living as if there was no tomorrow. I will not just sit down and give up! There will still be plenty more days of "what's next". One of my favorite sayings.
I do not want this to be discouraging to any one, I want my life to be an inspiration. This is just to let you know, it is all right to have a bad day and acknowledge it to be so. That way, when you have a good day or a great day, you can enjoy it to the fullest! Besides, the next post will be about the Saturday and Sunday after this bad day. They where two of the best days I had had for a while!
Tuesday, March 8, 2011
Fragments of Myself
24 years as a Mom with back problems left me overweight and out of shape. In '02 I had a stroke, leaving my right side weak, my mind confused and every function a chore. I was diagnosed with MS. In '04 I had back surgery to replace blown disks, and was diagnosed with degenerative disk disease. In '05 I had a 2nd back surgery to r...eplace the rods and screws, and '06 led to a knee surgery. In '07 my spouse of 27 years decided it was time to go our separate ways.
Then I met Mike Gray. We soon became fast friends. He took me hiking and, soon after, climbing. On my first try, with borrowed harness and slippers, I managed to get a little ways up the rock. Each time, I got a little stronger and more sure of myself. Now I top rope and clean gear (when my muscles and coordination work). While I don't lead, because I can't always depend on my muscles to do what I want them to, I love climbing! See More
Then I met Mike Gray. We soon became fast friends. He took me hiking and, soon after, climbing. On my first try, with borrowed harness and slippers, I managed to get a little ways up the rock. Each time, I got a little stronger and more sure of myself. Now I top rope and clean gear (when my muscles and coordination work). While I don't lead, because I can't always depend on my muscles to do what I want them to, I love climbing! See More
Monday, March 7, 2011
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