This morning I'm feeling the pain in my body (head, neck, spine, lower back, feet, joints) and extremely fatigued. My heart is feeling like it's cramping. That's the only was I can explain it.
Last night, I went out to some friends for dinner. I was a little reluctant since I was still recovering from having a collapse a few days earlier. Days afer I have a collapse I get a headache, slight dizziness, and what feels like inflamation throughout from my head, neck, spine to my lower back and feet. After I lay down for a while, when I get up, every joint feels stiff and my feet hurt? Why this is I don't know, but it happens everytime.
I had rested partly through the day yesterday and then did some laundry. I still felt run down. My battery was only half charged. When I was asked to come over for dinner I really wanted to go, so I did. I thought it would be a low key visit. So I went, even though I still had a headache that was at the base of my neck/head.
Shorty after arriving I got visiting with a gal there and I listened to her adventures and just kept my talking mininal. Even the listening was straining because you also offer expressions like smiling, laughter and interjections. I could feel as the night was progressing so was my condition. After a while my left arm jerked a few times, this is the first warning, I knew I needed to get going. I was starting to zone out and knew if I pushed myself I would collapse again.
It's hard to get together with people when they don't understand or fully know what's wrong with you or even what to do. It makes it hard to get to know new people, because they have to be at least aware of my conditon incase I collapse, so it doesn't freak them out. But really nobody wants to hear about it, they just want to have a good time. So even though you don't feel great you don't want to bust up the fun, so you just leave.
When my system starts to take me out, it makes it very difficult to socialize. So you either stay in bed to recoup or you simply don't go out. This could be weeks or even months. When you're on a down time people begin to think it's depression. This frustrates me more than anything. I am not a depressed person, however, it does become a downer when you're house bound for a while and your social dies out. That's pretty normal to feel.
If I'm feeling well I usually load up my day with all the things I need and want to do. This illness has nothing to do with laziness or stress issues. When the battery has no charge or very little there's not much you can do. You have to wait for it to recharge. My battery doesn't hold a charge very well.
If you go to The Humming Bird's website on M.E. it gives a good description on this illness. Check it out in my links.
I'll talked about reverse paralysis locked in syndrome a bit later. Something a neurologist mentioned to me, which is currently being investigated. Just watch for this title.
Monday, April 26, 2010
Sunday, April 25, 2010
Introduction Continued Part II
This is now Sunday April 25/10. I feel a little more restored than I did the last couple of days. I'll continue my introduction now...
A twenty year illness surfaces (this part explains the beginning of this illness)
It was over two years ago (2007) that my health took a turn for the worse, to the point I had to stop working. I had been experiencing most of these symptoms for years periodically, but it hadn't bothered me in a while. I might only have a few episodes a year. I was once hospitalized over ten years ago for a week because my system shut down completely leaving me in a paralyzed state. The doctors never figured it out and I never pursued it after I was better. I just figured it went away. But it didn't go away completely.
Where it all began
When I was in my early twenties I had become extremely ill with flu like symptoms. I had fever, chills, extreme sweating, swollen throat and cold sores. I had never had a cold sore before this time and knew I had gotten it from my boyfriend / future husband. I really didn't know what they were. I thought they were just pimples. NOT. I was so sick a doctor came to my apartment and gave me antibiotics. One night I was dilirious and sweat right through the house coat, drenching the sheets. My boyfriend rang out the house coat in the bathtub. I am a petite women and really don't sweat noticeably, only if I workout really hard I might get some small beads of sweat on my nose. So this was very unusual for me. I was off work for three weeks.
It would be after this time that I started getting an unusual symptom. After work I would feel so exhausted and when I laid down to rest my left arm started twitching, flinging my arm across my chest. It wouldn't stop. My husband and I went to emerg. This was so unusual. The doctor ordered a CAT SCAN. When I went to get this done the technician told me this dye was the least likely to cause an allergy reaction. I wasn't concerned, since they said it was safe.
The minute the dye was injected I felt it hit my head and it felt like it was going to kill me... my head and eyes started to shut down. As quickly as I could, I announced I was going to pass out!! They quickly injected me with medication to stop the reaction. I instantly swelled causing my breathing to become difficult and I felt drowsy all at the same time because of the medicine. Thank goodness they had it ready. My left arm started twitching out when this happened because my body was jolted.
After a short while they aborted the dye plan and just put me into the machine. I don't know if they could even get a great picture without the dye, but they said they could still do it. It apparently showed nothing.
I was later sent to a neurologist. He was an impatient man and had an air about him I didn't like. He turned my head and I was dizzy both ways. He brushed me off as it was only stress. I couldn't imagine what I would have been stressed about. I was newly married and a happy girl. I knew this was an unusual symptom and knew it wasn't from stress. So I didn't pursue it any further. I had lost confidence in the doctors. I wasn't one to go to the doctors to complain anyways and I wasn't hurting anywhere so I left it. My left arm for many years would still twitch out if I over exerted myself. It never twitched out if I was emotionally stressed.
I was always an active person and physically fit. I liked to do a lot of things and just did it. But then after I had my two children I began to collapse at home. I could always feel it coming on so I would go to the couch and lay down. The first time it happened my whole body shut down causing my body to be in paralyzed state. I was coherent and could feel my body. My eyes were fixed only enabling me to blink slowly. My left arm would twitch out and that was it. This lasted for about a half hour and then I slowly came out of it and felt very slow. There was no pain so I never went to the doctors.
This would happen periodically over the next few years. Until finally I was having more episodes like this and they were happening more often. Then one day after I had an episode my friend suggested I go to the doctors. I realized then that something was going wrong and I should find out. When I walked into the doctor's office I was standing at the desk and then I collapsed. They didn't know why I had come in. But there I was on the floor jerking and paralyzed. Again I could hear and feel everything and my eyes were fixed only blinking slowly.
I was sent to the next city closest that could do more testing. I was there for a week. They did an eeg and some blood work, but nothing too extensive. I was coming in and out of this state of paralysis for the next week. One night it was at the point my breathing had shallowed down to the point it even stopped. I was paralyzed I couldn't hit the buzzer for the nurse... I couldn't take that breath and I was scared! It went as far as it could go and then my breathing came back. What was that all about now? This was new. This happened several times that night. This was now concerning me that this could turn seriously life threatening.
In the end the doctors couldn't figure this out and just called it stress. I was so appalled at their lack of investigation. When doctors don't know what's wrong they call it stress. I have discovered doctors learn the basics and then study whatever they want from the point of their graduation. It's their choice if they want to learn more.
That was the worse time I had with the collapsing and then it pittered out. There was no rhyme or reason. I didn't let it consume me. I just carried on as before. I was a stay home mom raising my children so I had no worries. If I didn't feel well I just simply laid down so it would escalate to the point of collapsing me.
When we moved out to the country and started to have a little hobby farm with chickens, etc., there was work to be done. Some mornings when I would go out to the pond to pick up buckets of water, early morning, and I would feel suddenly sick to my stomach feeling instantly drained. I knew I was going to collapse, so I charged to the house and on the way I was already shutting down. I couldn't speak and my body was going numb, then I would flop on the bed jerking about. This would last about an hour. After I came out of it, I was very slow with my speech and movements after. Every single time I've collapsed I was coherent and could feel everything. My body felt like it was in a deep sleep and there was nothing I could do to wake it up.
Several years later... (I was now working full-time providing for myself as a single mom)
2007
Since being in a fulltime position at work I had been feeling out of sorts for several months and noticed my memory was glitching way too much, so I went to the doctors to find out if cortisol levels were out or my hormones. My thyroid had been out for a few years and was taking .25mg of synthroid which helped through that time. After work I would go home completely exhausted and run down so I didn't do much, just rested. My blood work didn't show anything unusual.
By the next month I had been getting a lot of vertigo and just took tylenol to try and curb this headache dizzy feeling. It was hard at work becuase you have to move quickly and be on the ball. This dizziness was slowing me down and frustrating my co-workers. I would try not to move my head too fast from one side to the other or I would get real dizzy, but I still got dizzy anyways if I turned my head.
A short while later that month, while at work one day, I could tell my body was starting feel numb. My head was fuzzing out, making me feel blank in the head with a numbing sensation across my forehead leading into the rest of my face. Then I felt the rest of my body going with numbing in my limbs. My left arm started twitching, as it had always done when my system got run down. I had learned to cope with the twitching of the left arm for many years, but never knew why it was doing that. I just knew it twitched when I was physically exhausted. Now this numbing sensation with more dizziness was starting to occur.
Shortly into these symptoms starting up I could tell I was going to collapse, so I found a chair and rested the back of my head on the back of the chair slouching in the chair. Then I shut down with my left arm jerking. My co-workers lifted me to another room to lay down. One lady suggested I was having a seizure and I should go to the doctors. So I went as soon as I was able to get up and function properly.
Shortly after arriving at the clinic, while standing at the counter talking to the girl I could tell I was going to collapse again. I told the girl to come around and help me I was going to collapse. She waved me off and told me to just take a chair the will just be a short while. I hugged the counter and told her I was going to collapse again. I couldn't have walked from the counter to the chairs and I knew I was going down. She came around to help me to the chairs by this short moment I could no longer speak, my legs were going numb and I was collapsing. She drapped me on the chairs and then got the doctor. Good grief!
Once they carried me to the room the doctors did a who check over and again they didn't know why I was there, but it was unfolding for them before their eyes. They called an ambulance and took me to the hospital. They had given me something to put me out. The next thing I remember was waking up in emerg at 9:00 pm. By then they had taken a chest x-ray and done a CT SCAN. I was in the hospital for a couple of days.
For there on my journey got more interesting as doctors fuddled their way through. I will continue this in part III.
A twenty year illness surfaces (this part explains the beginning of this illness)
It was over two years ago (2007) that my health took a turn for the worse, to the point I had to stop working. I had been experiencing most of these symptoms for years periodically, but it hadn't bothered me in a while. I might only have a few episodes a year. I was once hospitalized over ten years ago for a week because my system shut down completely leaving me in a paralyzed state. The doctors never figured it out and I never pursued it after I was better. I just figured it went away. But it didn't go away completely.
Where it all began
When I was in my early twenties I had become extremely ill with flu like symptoms. I had fever, chills, extreme sweating, swollen throat and cold sores. I had never had a cold sore before this time and knew I had gotten it from my boyfriend / future husband. I really didn't know what they were. I thought they were just pimples. NOT. I was so sick a doctor came to my apartment and gave me antibiotics. One night I was dilirious and sweat right through the house coat, drenching the sheets. My boyfriend rang out the house coat in the bathtub. I am a petite women and really don't sweat noticeably, only if I workout really hard I might get some small beads of sweat on my nose. So this was very unusual for me. I was off work for three weeks.
It would be after this time that I started getting an unusual symptom. After work I would feel so exhausted and when I laid down to rest my left arm started twitching, flinging my arm across my chest. It wouldn't stop. My husband and I went to emerg. This was so unusual. The doctor ordered a CAT SCAN. When I went to get this done the technician told me this dye was the least likely to cause an allergy reaction. I wasn't concerned, since they said it was safe.
The minute the dye was injected I felt it hit my head and it felt like it was going to kill me... my head and eyes started to shut down. As quickly as I could, I announced I was going to pass out!! They quickly injected me with medication to stop the reaction. I instantly swelled causing my breathing to become difficult and I felt drowsy all at the same time because of the medicine. Thank goodness they had it ready. My left arm started twitching out when this happened because my body was jolted.
After a short while they aborted the dye plan and just put me into the machine. I don't know if they could even get a great picture without the dye, but they said they could still do it. It apparently showed nothing.
I was later sent to a neurologist. He was an impatient man and had an air about him I didn't like. He turned my head and I was dizzy both ways. He brushed me off as it was only stress. I couldn't imagine what I would have been stressed about. I was newly married and a happy girl. I knew this was an unusual symptom and knew it wasn't from stress. So I didn't pursue it any further. I had lost confidence in the doctors. I wasn't one to go to the doctors to complain anyways and I wasn't hurting anywhere so I left it. My left arm for many years would still twitch out if I over exerted myself. It never twitched out if I was emotionally stressed.
I was always an active person and physically fit. I liked to do a lot of things and just did it. But then after I had my two children I began to collapse at home. I could always feel it coming on so I would go to the couch and lay down. The first time it happened my whole body shut down causing my body to be in paralyzed state. I was coherent and could feel my body. My eyes were fixed only enabling me to blink slowly. My left arm would twitch out and that was it. This lasted for about a half hour and then I slowly came out of it and felt very slow. There was no pain so I never went to the doctors.
This would happen periodically over the next few years. Until finally I was having more episodes like this and they were happening more often. Then one day after I had an episode my friend suggested I go to the doctors. I realized then that something was going wrong and I should find out. When I walked into the doctor's office I was standing at the desk and then I collapsed. They didn't know why I had come in. But there I was on the floor jerking and paralyzed. Again I could hear and feel everything and my eyes were fixed only blinking slowly.
I was sent to the next city closest that could do more testing. I was there for a week. They did an eeg and some blood work, but nothing too extensive. I was coming in and out of this state of paralysis for the next week. One night it was at the point my breathing had shallowed down to the point it even stopped. I was paralyzed I couldn't hit the buzzer for the nurse... I couldn't take that breath and I was scared! It went as far as it could go and then my breathing came back. What was that all about now? This was new. This happened several times that night. This was now concerning me that this could turn seriously life threatening.
In the end the doctors couldn't figure this out and just called it stress. I was so appalled at their lack of investigation. When doctors don't know what's wrong they call it stress. I have discovered doctors learn the basics and then study whatever they want from the point of their graduation. It's their choice if they want to learn more.
That was the worse time I had with the collapsing and then it pittered out. There was no rhyme or reason. I didn't let it consume me. I just carried on as before. I was a stay home mom raising my children so I had no worries. If I didn't feel well I just simply laid down so it would escalate to the point of collapsing me.
When we moved out to the country and started to have a little hobby farm with chickens, etc., there was work to be done. Some mornings when I would go out to the pond to pick up buckets of water, early morning, and I would feel suddenly sick to my stomach feeling instantly drained. I knew I was going to collapse, so I charged to the house and on the way I was already shutting down. I couldn't speak and my body was going numb, then I would flop on the bed jerking about. This would last about an hour. After I came out of it, I was very slow with my speech and movements after. Every single time I've collapsed I was coherent and could feel everything. My body felt like it was in a deep sleep and there was nothing I could do to wake it up.
Several years later... (I was now working full-time providing for myself as a single mom)
2007
Since being in a fulltime position at work I had been feeling out of sorts for several months and noticed my memory was glitching way too much, so I went to the doctors to find out if cortisol levels were out or my hormones. My thyroid had been out for a few years and was taking .25mg of synthroid which helped through that time. After work I would go home completely exhausted and run down so I didn't do much, just rested. My blood work didn't show anything unusual.
By the next month I had been getting a lot of vertigo and just took tylenol to try and curb this headache dizzy feeling. It was hard at work becuase you have to move quickly and be on the ball. This dizziness was slowing me down and frustrating my co-workers. I would try not to move my head too fast from one side to the other or I would get real dizzy, but I still got dizzy anyways if I turned my head.
A short while later that month, while at work one day, I could tell my body was starting feel numb. My head was fuzzing out, making me feel blank in the head with a numbing sensation across my forehead leading into the rest of my face. Then I felt the rest of my body going with numbing in my limbs. My left arm started twitching, as it had always done when my system got run down. I had learned to cope with the twitching of the left arm for many years, but never knew why it was doing that. I just knew it twitched when I was physically exhausted. Now this numbing sensation with more dizziness was starting to occur.
Shortly into these symptoms starting up I could tell I was going to collapse, so I found a chair and rested the back of my head on the back of the chair slouching in the chair. Then I shut down with my left arm jerking. My co-workers lifted me to another room to lay down. One lady suggested I was having a seizure and I should go to the doctors. So I went as soon as I was able to get up and function properly.
Shortly after arriving at the clinic, while standing at the counter talking to the girl I could tell I was going to collapse again. I told the girl to come around and help me I was going to collapse. She waved me off and told me to just take a chair the will just be a short while. I hugged the counter and told her I was going to collapse again. I couldn't have walked from the counter to the chairs and I knew I was going down. She came around to help me to the chairs by this short moment I could no longer speak, my legs were going numb and I was collapsing. She drapped me on the chairs and then got the doctor. Good grief!
Once they carried me to the room the doctors did a who check over and again they didn't know why I was there, but it was unfolding for them before their eyes. They called an ambulance and took me to the hospital. They had given me something to put me out. The next thing I remember was waking up in emerg at 9:00 pm. By then they had taken a chest x-ray and done a CT SCAN. I was in the hospital for a couple of days.
For there on my journey got more interesting as doctors fuddled their way through. I will continue this in part III.
Saturday, April 24, 2010
Not well today.
I woke about 5 am. I was going to start writing on my computer while I was still in bed, but the one laptop computer I have the curser kept jumping around and it was frustrating me. So I decided to get up and go to my office to use this computer.
Yesterday evening I did a bit of weeding and planted a couple of new bushes to fix up the front yard. I could tell my system was wiping out and that I would pay for it later. Yip! This is later and I can feel my whole spine from my neck to my lower back enflamed. When I got up my feet hurt... this is just one of those things that happens. Then when I get up out of bed I walk like a little old lady, which I'm not. I'm feeling a bit sick to my stomach now, so I must stop and go back to bed.
My blog will take some time for me to explore and set up. Keep checking back. It will take off I promise!
Yesterday evening I did a bit of weeding and planted a couple of new bushes to fix up the front yard. I could tell my system was wiping out and that I would pay for it later. Yip! This is later and I can feel my whole spine from my neck to my lower back enflamed. When I got up my feet hurt... this is just one of those things that happens. Then when I get up out of bed I walk like a little old lady, which I'm not. I'm feeling a bit sick to my stomach now, so I must stop and go back to bed.
My blog will take some time for me to explore and set up. Keep checking back. It will take off I promise!
My Introduction
I woke this morning too early. It's still dark out. My cats were happily curled up against me. My little toy poodle was on the floor this time. She was clearly jealous of the cats being with me instead of her. Poor baby, but they must take turns. My window was open and there was a nice gentle breeze blowing in fresh air. I could hear the rustling of the trees as the wind was blowing. Southern Alberta gets a lot of wind. I usually don't mind as I'm in door much of the time.
This is my first blog. I've never had one or ever thought to have one. As I was laying here in bed many thoughts were rushing though my mind. I was reflecting on my medical journey. I've gotten to a point that I don't look at the losses and disappointments that I've had over the last couple of years the same. It's been a medical journey filling me with good information. Unfortunately it's been at my expense, from my health and finances to my social life.
My inspiration for writing this blog has come as a result of the injustice, ignorance, lack of knowledge and loss, that the medical society bestows upon its patients, the insurance company rides upon its clients and the difficulties people with illnesses have had to endure. This blog will undoubtedly offer information to both the medical society and the person battling through their illness. These are my recollections...
My inspiration for writing this blog has come as a result of the injustice, ignorance, lack of knowledge and loss, that the medical society bestows upon its patients, the insurance company rides upon its clients and the difficulties people with illnesses have had to endure. This blog will undoubtedly offer information to both the medical society and the person battling through their illness. These are my recollections...
Over two years ago I had to go on to disability because my health was wiping me out due to collapsing.
(I must stop here. I've been up for a while now checking out how to work this blog and now I am very wiped out. Stay posted I will be adding all the information and regular posts everyday if possible.)
(I must stop here. I've been up for a while now checking out how to work this blog and now I am very wiped out. Stay posted I will be adding all the information and regular posts everyday if possible.)
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