Rest is something you don't get much in a hospital anyway. Because when I finally fell asleep around 4am, it wasn't for long. At 6pm at that Wednesday August the 31st, the first nurse shift came by to administer me my daily medicine. An hour later the breakfast crew came by. I sometimes hear people complain about hospital food, but the food here was (or at least looked) incredible. They rolled in an entire buffet you could choose from. I tried a delicious looking piece of bread and a boiled egg. Of course I had forgotten about my disability to eat and taste.
I got SO incredibly frustrated and only took one bite. This is the first time I noticed what being under observation meant, because as soon as the clean up crew noticed my unfinished food, the next person I saw was a dietitian. Which turned out well for me, because she ordered special bottles of calorie rich fluid that were very sweet. Since extreme sweetness was the only thing I could taste, and fluid was about the only thing I could handle, this was very welcome.
The p&n was now halfway up my legs and arms. My face had no expression anymore. I couldn't close my eyes completely. I could open my mouth and somewhat talk, but that was it. I had to use a walker or a wheelchair to get to the toilet, where the next drama would start (more about that soon). I couldn't control my swallowing anymore. I was warned about that, because it's a common GBS symptom. And surely right away I was choking on my fluid. I recovered quickly, but it can cause pneumonia, which can have devastating results in combination with GBS (if I had GBS, which was still to be determined.)
Right after my fluid breakfast someone came by to take another couple of vials of my blood (one day apparently doesn't make a difference, but two do?) Around 10am a nurse came by with a wheelchair to bring me to the imaging area of the hospital for an MRI scan of my head. The guy who was going to scan my head was a very cheerful, tall guy. He tried to have a conversation with me, but it turned out quite one-sided since I couldn't talk much. I do remember he had to help me on the bed that eventually goes in to the scanner. When he had to do that he said: "You're younger than me!". I still don't know what he meant by that.... I wasn't there for fun.
Thursday, December 28, 2017
Hospital day 1
Although it was still morning when the ambulance picked me up, so much time had gone by with the examinations that it was almost evening when I was finally in my hospital bed. The first visiting hours I had there were between 7pm and 8pm that very night. My mother in law, my girlfriend and my son came to see me.
Just as they were visiting the female neurologist, who I will call Mary, came visiting me in my room. She said: "My doubts are too strong, I'm going to put you through the entire GBS test procedure, starting tomorrow". I was so relieved. Of course I didn't want to be diagnosed with GBS, but if I did have it, it was best to have it properly diagnosed as soon as possible.
Mary explained to me that the GBS test procedure mainly consisted from excluding every possible other cause that could give the same symptoms, finally doing a epidural (or lumbar puncture) where GBS should be clearly visible. I wasn't looking forward to all these examinations, but something had to happen.
I had a very restless night, because the elderly woman next to me went for a smoke early in the evening, fell from her walker, broke her arm, but since she had suffered a stroke and was given blood thinners, they couldn't operate her. So she was screaming and moaning from pain all night. Incredibly sad, but not very well for my rest.
Just as they were visiting the female neurologist, who I will call Mary, came visiting me in my room. She said: "My doubts are too strong, I'm going to put you through the entire GBS test procedure, starting tomorrow". I was so relieved. Of course I didn't want to be diagnosed with GBS, but if I did have it, it was best to have it properly diagnosed as soon as possible.
Mary explained to me that the GBS test procedure mainly consisted from excluding every possible other cause that could give the same symptoms, finally doing a epidural (or lumbar puncture) where GBS should be clearly visible. I wasn't looking forward to all these examinations, but something had to happen.
I had a very restless night, because the elderly woman next to me went for a smoke early in the evening, fell from her walker, broke her arm, but since she had suffered a stroke and was given blood thinners, they couldn't operate her. So she was screaming and moaning from pain all night. Incredibly sad, but not very well for my rest.
ER Episode 2 Part 3
Coincidentally I was put in to the same cubicle again and the entire episode started all over again. Sure enough, after a while the same ER doctor that 'treated' me the day before came in to my cubicle speaking the legendary words: "Here you are again!". After which we went trough the exact same procedures again, except for the blood examination, because they said nothing would have changed in a day. Made sense.
The ER youngster was clueless, I could tell from his eyes. He asked my girlfriend what she thought was wrong and she told him everything, from the walking to the talking, from the pins and needles to my eyes. She got so frustrated she told him: "Can't you tell from the way he walks and talks!", his reply was: "I don't know what his normal way of walking and talking is". At which she shouted: "WELL NOT LIKE THIS!". He left.
He came back with a neurologist. Female this time, a lot younger than Bob the day before, but a bit older and clearly more experienced than the young ER doctor. She also went through all the neurological tests I had been through three times already, and she also didn't think there was something wrong with me, surely not GBS. Then she tested the reflexes in my feet. There were none. This was the moment she started to have doubts, because clearly that wasn't stress related and I learned later that missing reflexes are the first sign of GBS.
She literally told me: "I'm far from convinced, but I'm going to admit you to the hospital for one night, for observation". Although being in the hospital is the last thing I (or anyone else I imagine) wanted, I felt relieved that I was being looked after for a while. I had to wait for two more hours after which I was picked up by yet another nurse who took me to the neurological ward, in a room with another guy from my age and an elderly woman.
The ER youngster was clueless, I could tell from his eyes. He asked my girlfriend what she thought was wrong and she told him everything, from the walking to the talking, from the pins and needles to my eyes. She got so frustrated she told him: "Can't you tell from the way he walks and talks!", his reply was: "I don't know what his normal way of walking and talking is". At which she shouted: "WELL NOT LIKE THIS!". He left.
He came back with a neurologist. Female this time, a lot younger than Bob the day before, but a bit older and clearly more experienced than the young ER doctor. She also went through all the neurological tests I had been through three times already, and she also didn't think there was something wrong with me, surely not GBS. Then she tested the reflexes in my feet. There were none. This was the moment she started to have doubts, because clearly that wasn't stress related and I learned later that missing reflexes are the first sign of GBS.
She literally told me: "I'm far from convinced, but I'm going to admit you to the hospital for one night, for observation". Although being in the hospital is the last thing I (or anyone else I imagine) wanted, I felt relieved that I was being looked after for a while. I had to wait for two more hours after which I was picked up by yet another nurse who took me to the neurological ward, in a room with another guy from my age and an elderly woman.
ER Episode 2 Part 2
After about 15 minutes, an ambulance indeed stopped in front of our house. Three paramedics got out (when they DO come, they come with an army apparently). Two middle-aged male paramedics and a younger female one. One of the two guys was so impressive that my son hid under the table. The guy was so tall he almost hit the ceiling. Combine that with his massive stature and his long beard, he sure knew how to make an entrance, but he was so sweet. He reminded me very much of Harry Potter's Hagrid.
All the interviews started again, they rang to the ER and after a long conversation (which felt like a negotiation) they agreed to take me in to the hospital. Now my house isn't really fit to ride a stretcher with someone on through, so they decided I had to walk. I cringed and told them I can't. "Sure you can" they said as they helped me up. Hagrid then turned around, put his hands backwards and told me to hold his hands. This way we moved step by step towards the ambulance, which was waiting in front of my house, just like the entire neighborhood. You never see them, but put an ambulance in to the equation and it's like new year's eve. But I guess that is understandable.
Then I had to climb in to the ambulance, which I did with all the strength I had left in my arms. Finally I was put on to the stretcher and the girl-paramedic strapped me in. Hagrid started the ambulance and the other male asked me "Do you like music René?" I replied "I sure do" and we had a mobile dance party on the road to the hospital. Disregarding my current situation that was the most fun I had had in ages. After a trip that (knowing the city) took way longer than you would expected, and after the girl checked my sugar levels etc, which were all fine, we arrived at the hospital where the three musketeers rolled me in to the familiar ER again.
All the interviews started again, they rang to the ER and after a long conversation (which felt like a negotiation) they agreed to take me in to the hospital. Now my house isn't really fit to ride a stretcher with someone on through, so they decided I had to walk. I cringed and told them I can't. "Sure you can" they said as they helped me up. Hagrid then turned around, put his hands backwards and told me to hold his hands. This way we moved step by step towards the ambulance, which was waiting in front of my house, just like the entire neighborhood. You never see them, but put an ambulance in to the equation and it's like new year's eve. But I guess that is understandable.
Then I had to climb in to the ambulance, which I did with all the strength I had left in my arms. Finally I was put on to the stretcher and the girl-paramedic strapped me in. Hagrid started the ambulance and the other male asked me "Do you like music René?" I replied "I sure do" and we had a mobile dance party on the road to the hospital. Disregarding my current situation that was the most fun I had had in ages. After a trip that (knowing the city) took way longer than you would expected, and after the girl checked my sugar levels etc, which were all fine, we arrived at the hospital where the three musketeers rolled me in to the familiar ER again.
ER Episode 2
Because, when I woke up the next day after having slept on the couch again (I still couldn't walk, let alone up the stairs) I had lost the control over the other side of my mouth as well. At that moment I hardly couldn't say anything that was understandable anymore. I couldn't eat well anymore, because apparently I had lost the use of my cheek muscles. When you chew, you obviously do this with your teeth, but you might not realize that your cheeks constantly push the food back to the middle so they can be processed again. If that doesn't work, your food gets 'stuck' in your cheeks after a couple of times chewing. I had to manually push my cheeks to push the food back to the middle.
But even worse, I lost my taste! The only thing I could still taste was something that was very very sweet. Sour, salt and bitter didn't get analyzed by my tongue, or brain, whichever. Last but not least I couldn't even get as far as to put my hands on the table to stand up. And the panic returned.
My girlfriend was still asleep when I woke up that Tuesday August 30th, but when she did and saw (and heard) me, I could see the panic in her eyes. Now as I told you, she is one that is not scared easily, so her panic increased my panic too. She skipped the doctor's office and went straight on to call the ER, where I had been the day before. The ER told her that we should come in again. As well as I could I tried to interrupt her to tell her there was no way I could make it there on my own. The ER nurse told us to call an ambulance.
My girlfriend did just that. She spent the next half hour trying to convince the dispatch room that this was urgent enough to send an ambulance. Apparently as long as you're talking (ish) and breathing it is hard to get an ambulance here. I somewhat can understand that they have to filter the calls, but in my case (turned out later) time was very much of the essence. Finally they agreed to send an ambulance.
But even worse, I lost my taste! The only thing I could still taste was something that was very very sweet. Sour, salt and bitter didn't get analyzed by my tongue, or brain, whichever. Last but not least I couldn't even get as far as to put my hands on the table to stand up. And the panic returned.
My girlfriend was still asleep when I woke up that Tuesday August 30th, but when she did and saw (and heard) me, I could see the panic in her eyes. Now as I told you, she is one that is not scared easily, so her panic increased my panic too. She skipped the doctor's office and went straight on to call the ER, where I had been the day before. The ER told her that we should come in again. As well as I could I tried to interrupt her to tell her there was no way I could make it there on my own. The ER nurse told us to call an ambulance.
My girlfriend did just that. She spent the next half hour trying to convince the dispatch room that this was urgent enough to send an ambulance. Apparently as long as you're talking (ish) and breathing it is hard to get an ambulance here. I somewhat can understand that they have to filter the calls, but in my case (turned out later) time was very much of the essence. Finally they agreed to send an ambulance.
ER Episode 1 Part 4
He left for a while and came back with the results of my blood examination, which turned out fine. I had expected this (although it was a revelation to hear my cholesterol was fine) since that still meant GBS was an option, but it didn't help my case at that very moment. For all I know they still thought it was stress related. He then left again for a long time.
Finally he returned with Bob, the neurologist. Apart from my own name, I'm not using any real names in my story, whether my experience with them is positive or negative. I don't know if they would appreciate that so I will use fictional names.
Neurologist Bob is a male well in his 50's. Where I was happy with a young ER doctor, I was even happier with a very experienced neurologist. It is such a specialized area that I prefer someone who has been doing it so long that you would expect that he has at least seen one or more GBS patients, I finally caught a break, or so I thought.
Bob did the same neurological tests with me, but extended them a little more. Asked me the same questions. Listened to my GBS fear and then left.
After more than an hour he returned to me. He said "I don't think there is anything wrong with you! I think you went through so much stress that this is the way your body is reacting. You need rest and nothing more!"
Now I KNEW that wasn't true, but this was exactly what my mind wanted to hear at that moment. So I simply accepted that diagnose, and let them send me home without any argument.
When I came home, my girlfriend nearly chopped my head off in anger, because she knew this wasn't true. And it didn't take very long for her to be proven right....
Finally he returned with Bob, the neurologist. Apart from my own name, I'm not using any real names in my story, whether my experience with them is positive or negative. I don't know if they would appreciate that so I will use fictional names.
Neurologist Bob is a male well in his 50's. Where I was happy with a young ER doctor, I was even happier with a very experienced neurologist. It is such a specialized area that I prefer someone who has been doing it so long that you would expect that he has at least seen one or more GBS patients, I finally caught a break, or so I thought.
Bob did the same neurological tests with me, but extended them a little more. Asked me the same questions. Listened to my GBS fear and then left.
After more than an hour he returned to me. He said "I don't think there is anything wrong with you! I think you went through so much stress that this is the way your body is reacting. You need rest and nothing more!"
Now I KNEW that wasn't true, but this was exactly what my mind wanted to hear at that moment. So I simply accepted that diagnose, and let them send me home without any argument.
When I came home, my girlfriend nearly chopped my head off in anger, because she knew this wasn't true. And it didn't take very long for her to be proven right....
ER Episode 1 Part 3
Within 20 minutes the big doors opened and another nurse came to pick me up. Since I was in a rental wheelchair that you can't operate while sitting in it, she had to push me to the ER room, where I was assigned to a cubicle surrounded by curtains. I laid down in a bed and waited for everything that was going to happen. Because there were only curtains around the 8 cubicles that were in there, I could hear everything that was happening, which doesn't actually put your mind at ease I can tell you.
After a while another nurse came to take my blood. Finally I was getting my blood work done. But I had also read that GBS can not be determined from a blood examination. However it would rule out all possible other things.
Then for a long time nothing happened in my cubicle. Finally the ER doctor came to me. A young fellow who couldn't have been out of school for long. Now I don't mind that because in my personal experience they are more determined and focused than the doctors who have been doing this for decades. He started asking me questions.
He then did some neurological tests with me, I had to stand up as well as I could, stand on my toes (which I obviously couldn't), lay down and push him away with my feet (which I could surprisingly well). And I told him everything I was suffering from.
Finally he looked in to my eyes and said "You are afraid aren't you?", I replied "I'm terrified". He asked me why and I told him that I feared to be suffering from GBS. I could tell from his eyes that he took my concern serious, but also that he didn't think I was right. Being such a rare disease I can't blame him, but I was hoping very much they would act as if it was a possibility anyway.
After a while another nurse came to take my blood. Finally I was getting my blood work done. But I had also read that GBS can not be determined from a blood examination. However it would rule out all possible other things.
Then for a long time nothing happened in my cubicle. Finally the ER doctor came to me. A young fellow who couldn't have been out of school for long. Now I don't mind that because in my personal experience they are more determined and focused than the doctors who have been doing this for decades. He started asking me questions.
He then did some neurological tests with me, I had to stand up as well as I could, stand on my toes (which I obviously couldn't), lay down and push him away with my feet (which I could surprisingly well). And I told him everything I was suffering from.
Finally he looked in to my eyes and said "You are afraid aren't you?", I replied "I'm terrified". He asked me why and I told him that I feared to be suffering from GBS. I could tell from his eyes that he took my concern serious, but also that he didn't think I was right. Being such a rare disease I can't blame him, but I was hoping very much they would act as if it was a possibility anyway.
ER Episode 1 Part 2
After a while my girlfriend finally came inside. I immediately asked her to grab one of the rental wheelchairs that were next to the entrance, because the road to the ER was several hundred yards away, I was never going to make that on foot. She grabbed on of them and she rolled me to the ER. Our 3-year old son was with us, because we couldn't find a babysitter on such short notice, so he was on my lap during the trip. I felt sorry for my slim girlfriend who had to push all that weight.
In Holland we have an ER system that works on urgency basis. Maybe this is the case everywhere, I don't know. But shortly after you arrive and you report your arrival, you get called in to the pre-screening room. An ER nurse there takes a look at you, asks you some questions and then decides your urgency. In my particular hospital, your urgency is labeled by a color. Green is non-urgent, orange is pretty urgent and red is immediately urgent etc. The colors decide how fast you are being helped.
She interviewed me and this was the first time I mentioned that I was scared that I was suffering from GBS. This nurse did actually know what GBS was, but (I assume due to it's rareness) didn't find that very likely. She said I probably suffered from something stress related. Nevertheless she labeled me Orange (pretty urgent) and I had to go back to the waiting room. Being back there I couldn't believe she thought it was stress. I couldn't walk! I couldn't speak well! But fine.
My son was getting a little tired so my girlfriend decided to take him to my mother in law, because we had no idea how long this was going to take. So there I was on my own.
In Holland we have an ER system that works on urgency basis. Maybe this is the case everywhere, I don't know. But shortly after you arrive and you report your arrival, you get called in to the pre-screening room. An ER nurse there takes a look at you, asks you some questions and then decides your urgency. In my particular hospital, your urgency is labeled by a color. Green is non-urgent, orange is pretty urgent and red is immediately urgent etc. The colors decide how fast you are being helped.
She interviewed me and this was the first time I mentioned that I was scared that I was suffering from GBS. This nurse did actually know what GBS was, but (I assume due to it's rareness) didn't find that very likely. She said I probably suffered from something stress related. Nevertheless she labeled me Orange (pretty urgent) and I had to go back to the waiting room. Being back there I couldn't believe she thought it was stress. I couldn't walk! I couldn't speak well! But fine.
My son was getting a little tired so my girlfriend decided to take him to my mother in law, because we had no idea how long this was going to take. So there I was on my own.
ER Episode 1
It is still Monday. The Dr. Freeze has just left us, and my girlfriend is supposed to get me to the ER in our local hospital. She has to lift me out of the couch and then support me to the car. I almost put all my weight on her, because I need to. My legs can't carry me anymore. I literally drop myself in to the car and she drives me the 10 minute trip to there. So many things cross my mind... "When will I return home ... will I ever?".
We arrive at the ER entrance of the hospital. She helps me out of the car first and then drives away to park the car at the designated parking. It is at that time that I realize that the former entrance is not there anymore. A sign tells me that we now have to use the main entrance which is about a 100 yards away. 100 yards, in this state. And the car is already gone!
I look at the long wall between where I'm standing and the entrance where I need to go. It feels like one of those horror movie effects, where the camera zooms out and the hallway appears to get longer and longer. I notice that there is a window every few feet in the wall. Below each window there is some kind of gutter which I could lean on. I decide that this will be my route. I start to scour past the wall, holding on to each gutter until I almost reach the end. The windows are running out because I'm reaching the entrance.
I've been in this hospital a lot of times so I know that once I am past the last window, there is literally nothing to hold on to until I have passed the two doors with the draft isolation space between them. To make it worse there is a very small, but present ramp leading up to the entrance, meaning I will need extra strength to 'climb' that. When you're healthy you probably wouldn't even have noticed it.
Stubborn as I am, I decide not to wait for my girlfriend and gather all my mental strength and start walking, letting go of the last window (for a second in my mind I hear dramatic film music starting, like a slow motion action scene). I have no idea how I managed to do it, but without help or holding on I made it up the little ramp, through the first door, through the space and finally the second door. Then I spotted a row of seats right at the door. The first seat was empty and on the second one was an elder man.
With everything that was left in me I made it to the first chair and literally let myself fall on it. It almost made the entire row move. The elder man looked at me as if I was crazy. I considered telling him my situation, but just in time remembered my vocal disability, so decided not to.
We arrive at the ER entrance of the hospital. She helps me out of the car first and then drives away to park the car at the designated parking. It is at that time that I realize that the former entrance is not there anymore. A sign tells me that we now have to use the main entrance which is about a 100 yards away. 100 yards, in this state. And the car is already gone!
I look at the long wall between where I'm standing and the entrance where I need to go. It feels like one of those horror movie effects, where the camera zooms out and the hallway appears to get longer and longer. I notice that there is a window every few feet in the wall. Below each window there is some kind of gutter which I could lean on. I decide that this will be my route. I start to scour past the wall, holding on to each gutter until I almost reach the end. The windows are running out because I'm reaching the entrance.
I've been in this hospital a lot of times so I know that once I am past the last window, there is literally nothing to hold on to until I have passed the two doors with the draft isolation space between them. To make it worse there is a very small, but present ramp leading up to the entrance, meaning I will need extra strength to 'climb' that. When you're healthy you probably wouldn't even have noticed it.
Stubborn as I am, I decide not to wait for my girlfriend and gather all my mental strength and start walking, letting go of the last window (for a second in my mind I hear dramatic film music starting, like a slow motion action scene). I have no idea how I managed to do it, but without help or holding on I made it up the little ramp, through the first door, through the space and finally the second door. Then I spotted a row of seats right at the door. The first seat was empty and on the second one was an elder man.
With everything that was left in me I made it to the first chair and literally let myself fall on it. It almost made the entire row move. The elder man looked at me as if I was crazy. I considered telling him my situation, but just in time remembered my vocal disability, so decided not to.
Day IX
Monday again, August 29th 2016. I now can hardly stand up anymore, even with help. This is seriously going the wrong way so I need medical help as soon as possible. And now I'm also starting to talk funny! It's like one side of my mouth doesn't fully function. For a minute I'm scared I might have the slowest stroke in history, but I look in the mirror and my mouth still looks straight, so that calms me down.
My girlfriend calls the doctor, since I can't verbalize well. His assistant tells us to come by, but I clearly tell my girlfriend that I am in no way capable to get to and from the car. She passes the message. The assistant tells us the doctor will come by our house, around noon. It was 9 AM when she called and those were very long hours.
Finally Dr. Freeze rings the doorbell at 1 PM. My girlfriend opens the door and he finds me sitting on the couch. He asks me what is wrong, and I tell him that everything I have already told him last Thursday has progressed. I also tell him about my eyes and my mouth. He does instantly see there is something wrong with my face and immediately tells me I have to go to the ER. He starts calling the ER to tell them I'm coming in and hands me a paper with my medical history, or well ... his version of it. It was like getting handed the personal notes about you of your psychiatrist, but fine.
I ask him if he has any idea what I could be suffering from. He says 'Oh hmm well I don't know, maybe a TIA or something.' I say "Doesn't a TIA only affect one side of the body, in stead of both?" I immediately add: "Could it be Guillain-Barré Syndrome?". He says "Nahhh I don't think so!" and right there and then I realize that he has no idea what GBS is. He wishes me well and leaves instantly.
Worth noting if you wonder why I'm so sarcastic about the man, this is the last time I have heard from him, even in everything that followed. I do not judge the wrong (non) diagnose due to the rareness of the disease, but I do mind that he never followed up. He retired shortly after this story (unrelated by the way).
My girlfriend calls the doctor, since I can't verbalize well. His assistant tells us to come by, but I clearly tell my girlfriend that I am in no way capable to get to and from the car. She passes the message. The assistant tells us the doctor will come by our house, around noon. It was 9 AM when she called and those were very long hours.
Finally Dr. Freeze rings the doorbell at 1 PM. My girlfriend opens the door and he finds me sitting on the couch. He asks me what is wrong, and I tell him that everything I have already told him last Thursday has progressed. I also tell him about my eyes and my mouth. He does instantly see there is something wrong with my face and immediately tells me I have to go to the ER. He starts calling the ER to tell them I'm coming in and hands me a paper with my medical history, or well ... his version of it. It was like getting handed the personal notes about you of your psychiatrist, but fine.
I ask him if he has any idea what I could be suffering from. He says 'Oh hmm well I don't know, maybe a TIA or something.' I say "Doesn't a TIA only affect one side of the body, in stead of both?" I immediately add: "Could it be Guillain-Barré Syndrome?". He says "Nahhh I don't think so!" and right there and then I realize that he has no idea what GBS is. He wishes me well and leaves instantly.
Worth noting if you wonder why I'm so sarcastic about the man, this is the last time I have heard from him, even in everything that followed. I do not judge the wrong (non) diagnose due to the rareness of the disease, but I do mind that he never followed up. He retired shortly after this story (unrelated by the way).
Day VII & VIII
Saturday August 27th 2016, I wake up on the couch again. I can immediately tell it has gotten worse. My legs feel weird, my arms feel weird, and what is up with my eyes? They feel weird too.
My mother in law wakes up and comes downstairs, after spending the night with us because she was worried about me. I managed to place myself in the garden before she woke up so she finds me there. The first thing she says is: "What is wrong with your eyes?". I have no idea, but I can feel it. Every time I blink it feels so weird. In a while I will find out that this is because when I blink, my eyes are not fully closing causing my eyes to become dry.
She insists I go to the ER right away. I tell her I don't want a strange doctor and I want to wait until Monday to see if it might improve. She calls me stubborn (and she is right) but she agrees.
Sunday August 28th isn't much different from the day before, but I can still tell that things are progressing in a negative way. I must go to the doctor tomorrow.
Because by now I have regained some sort of calmness, I start Googling for the symptoms I am experiencing. I had done so earlier in the week, but because it was only 'pins and needles in feet and hands', I didn't find anything conclusive.
This time I was searching for 'Pins and needles hands and feet, weak legs, weird feeling eyes'. And slowly I started to get results pointing to a thing called 'Guillain-Barré Syndrome' (GBS). Well there's something I had never heard about! Which is not weird when you realize that only 1 in a 100.000 people a year suffer from it, it's extremely rare.
I started reading more and more about this Syndrome, the symptoms and the prognosis. This was exactly what I was experiencing! But if this was what I had then I was in for a very dark ride. I read about the usual course of this GBS and things were looking bad.
My mother in law wakes up and comes downstairs, after spending the night with us because she was worried about me. I managed to place myself in the garden before she woke up so she finds me there. The first thing she says is: "What is wrong with your eyes?". I have no idea, but I can feel it. Every time I blink it feels so weird. In a while I will find out that this is because when I blink, my eyes are not fully closing causing my eyes to become dry.
She insists I go to the ER right away. I tell her I don't want a strange doctor and I want to wait until Monday to see if it might improve. She calls me stubborn (and she is right) but she agrees.
Sunday August 28th isn't much different from the day before, but I can still tell that things are progressing in a negative way. I must go to the doctor tomorrow.
Because by now I have regained some sort of calmness, I start Googling for the symptoms I am experiencing. I had done so earlier in the week, but because it was only 'pins and needles in feet and hands', I didn't find anything conclusive.
This time I was searching for 'Pins and needles hands and feet, weak legs, weird feeling eyes'. And slowly I started to get results pointing to a thing called 'Guillain-Barré Syndrome' (GBS). Well there's something I had never heard about! Which is not weird when you realize that only 1 in a 100.000 people a year suffer from it, it's extremely rare.
I started reading more and more about this Syndrome, the symptoms and the prognosis. This was exactly what I was experiencing! But if this was what I had then I was in for a very dark ride. I read about the usual course of this GBS and things were looking bad.
Day VI Part 3
After I made a similar journey to get back to the couch and I was finally sitting down again, I can't tell you what goes through your mind. "What is this?", "Will this become worse?", "Am I dying?" I decided to rest a lot in the following weekend and then if it wasn't any better on Monday, I would go back to the doctor.
Meanwhile, you just can not accept the situation. It also doesn't help that as long as I was sitting down, I didn't feel the weakness in my legs. So every other few minutes, I tried to stand up again, only to realize that I really couldn't. Once I did stand up (with help or by literally lifting myself) I could remain standing pretty well, but getting up was the problem.
My mother in law came by and she suggested to put a couple of pillows on the couch, to make it higher and hence make the step up a shorter distance. This proved to be a golden idea because that made it possible again for me to stand up by myself, leaning on the table. It didn't go easy, but I could get up.
All day long I kept standing up, shuffle to the garden and back, the toilet, just trying to walk normally again. But it only started to get worse. This was also the case with the pins and needles, which I didn't even really notice because my mind was still trying to grasp what was happening with my legs.
I slept on the couch again that Friday night.
Meanwhile, you just can not accept the situation. It also doesn't help that as long as I was sitting down, I didn't feel the weakness in my legs. So every other few minutes, I tried to stand up again, only to realize that I really couldn't. Once I did stand up (with help or by literally lifting myself) I could remain standing pretty well, but getting up was the problem.
My mother in law came by and she suggested to put a couple of pillows on the couch, to make it higher and hence make the step up a shorter distance. This proved to be a golden idea because that made it possible again for me to stand up by myself, leaning on the table. It didn't go easy, but I could get up.
All day long I kept standing up, shuffle to the garden and back, the toilet, just trying to walk normally again. But it only started to get worse. This was also the case with the pins and needles, which I didn't even really notice because my mind was still trying to grasp what was happening with my legs.
I slept on the couch again that Friday night.
Day VI Part 2
Needless to say I was scared out of my mind. But after a while some kind of native survival instinct takes over. So I managed to calm down and call my girlfriend, who was sleeping upstairs. I told her I couldn't stand up. She helped me up. I had all the power in my legs, they had no problem carrying me, like always. It was like they weren't receiving the orders my brain was giving them. I had to pee badly, so the next project was walking to the toilet, which was about 30-40 steps. No big deal normally, but in this case it felt like a never ending road. I, stubborn as I am, insisted I was doing this alone. My girlfriend being 40 pounds lighter than me was not going to catch me when I fell anyway.
So I carefully plotted out my route to the toilet, planning a way where I could grab on to something every few steps if I needed to. And I needed to.
Imagine yourself walking. What you basically do is throw your upper body forward and then the leg whose turn it is to step forward. You might not realize this, but I do now! Now imagine that you do this, but your leg is responding slower than you're used to. This results in a walking style that is best described as constantly falling but only just catching yourself with your legs. It was insane and the most scary thing I had ever experienced. Yet.
Every time I met a checkpoint so to speak, I held on to it like it was my first born, gathered the nerves to make the next part and then went on. I could feel my legs, I could feel they had strength, but they also felt weak. And somehow I couldn't make them do what I wanted. They were walking out of reflex, because they were used to, but they didn't do as instructed. I speak of 'they' because they really felt like a foreign object at that moment.
But I finally reached the toilet, which felt like it should have been rewarded with a medal at that moment. I started peeing. Thank heavens, at least that part still works and feels the same.
OK well, driving is probably not a good idea right now, since walking is already a problem. So I'm going to call in sick and do the blood work on Monday. I was positive that all the stress of the past days and the fear had some kind of influence on this whole situation.
So I carefully plotted out my route to the toilet, planning a way where I could grab on to something every few steps if I needed to. And I needed to.
Imagine yourself walking. What you basically do is throw your upper body forward and then the leg whose turn it is to step forward. You might not realize this, but I do now! Now imagine that you do this, but your leg is responding slower than you're used to. This results in a walking style that is best described as constantly falling but only just catching yourself with your legs. It was insane and the most scary thing I had ever experienced. Yet.
Every time I met a checkpoint so to speak, I held on to it like it was my first born, gathered the nerves to make the next part and then went on. I could feel my legs, I could feel they had strength, but they also felt weak. And somehow I couldn't make them do what I wanted. They were walking out of reflex, because they were used to, but they didn't do as instructed. I speak of 'they' because they really felt like a foreign object at that moment.
But I finally reached the toilet, which felt like it should have been rewarded with a medal at that moment. I started peeing. Thank heavens, at least that part still works and feels the same.
OK well, driving is probably not a good idea right now, since walking is already a problem. So I'm going to call in sick and do the blood work on Monday. I was positive that all the stress of the past days and the fear had some kind of influence on this whole situation.
Day VI
I woke up on the couch that Friday August 26th, being a little disoriented because I'm not used to that. You probably know how it is, it takes a couple of seconds to connect to reality, but surely shortly after that I realized the p&n in my hands and feet (or rather arms and legs by then) and thus my situation. It is like dreaming you won the lottery but then waking up realizing you still have to go to work.
So I figured I would get up, and get dressed to go to the hospital to have my blood checked out. I sat up and waited for a little while like I always do, because otherwise I get dizzy. After I sat up for a couple of minutes I decided to stand up. I said I decided to stand up. "STAND UP!!!" Nothing.
My mind, my thoughts, my feelings, everything suffered a major short circuit at that very moment. "What the hell is this??" I pushed/lifted myself off the couch with my arms like you often do when you stand up (but probably don't realize) but I fell right back on the couch.
"Am I paralyzed?!" I started moving my legs and feet. They still worked, thank heavens for that. OK well my body is probably still sleepy or something, so let's try that again. I was placing my feet firmly on the ground - "That's weird, I can't feel the cold tiles with my bare feet" - and lift myself up once again, now holding the table in front of the couch. I am literally pulling my body in an upright position with my arms.
I'm standing! Kind of. imagine a new born deer that tries to stand up for the first time. It stands, but only because it was left in that position by his mother who lifted him up. I was standing, leaning on the table. "So far, so good, now stand up straight". I stood up straight and fell right back on the couch.
Trust me, your mind can not immediately deal with something of that magnitude. So I remained on the couch for like 15 minutes, thoughts running through my mind in a record speed.
So I figured I would get up, and get dressed to go to the hospital to have my blood checked out. I sat up and waited for a little while like I always do, because otherwise I get dizzy. After I sat up for a couple of minutes I decided to stand up. I said I decided to stand up. "STAND UP!!!" Nothing.
My mind, my thoughts, my feelings, everything suffered a major short circuit at that very moment. "What the hell is this??" I pushed/lifted myself off the couch with my arms like you often do when you stand up (but probably don't realize) but I fell right back on the couch.
"Am I paralyzed?!" I started moving my legs and feet. They still worked, thank heavens for that. OK well my body is probably still sleepy or something, so let's try that again. I was placing my feet firmly on the ground - "That's weird, I can't feel the cold tiles with my bare feet" - and lift myself up once again, now holding the table in front of the couch. I am literally pulling my body in an upright position with my arms.
I'm standing! Kind of. imagine a new born deer that tries to stand up for the first time. It stands, but only because it was left in that position by his mother who lifted him up. I was standing, leaning on the table. "So far, so good, now stand up straight". I stood up straight and fell right back on the couch.
Trust me, your mind can not immediately deal with something of that magnitude. So I remained on the couch for like 15 minutes, thoughts running through my mind in a record speed.
Day V Part 3 - Dr. Freeze
In the introduction I explained thoroughly that I used to suffer from hypochondria. I also told you that there is a relation between that and the subject of this Blog. This chapter holds the first reason.
So, my legs are acting weird. My doctor's office is located on the fourth floor of a the building I'm walking towards. Usually I always take the stairs, even when I was suffering from a double pneumonia nothing could stop me from taking the stairs. This time, I didn't know what on earth was going on with my legs. I couldn't trust them, so I chose to take the elevator. I managed to reach the waiting room and literally crashed in to the first seat I came across.
As usual the doctor was running late due to previous appointments, but this was the first time that I actually didn't mind because I was not looking forward having to stand up again. But finally he opened his door and called me in. I grabbed hold of the table I was sitting on, using my (also sensory malfunctioning) hands to lift me out of the chair, walking to the doctor in some sort of a Jack Sparrow kind of walk. Shaking his hand, realizing this is the first time I shook someone's hand since the first time the pins and needles occurred, noticing that I couldn't give the firm hand I usually could, before continuing the Sparrow dance to his office.
This is where the usual act took place. He doesn't look at me, asks me what is wrong while immediately starting to type on his computer. If I didn't say anything yet, what the hell is he typing? Anyway... I had been dealing with the p&n for days now so I could explain quite well what I was experiencing, even though it was hard to find the right words. The ice curtain was pretty new so I found that hard to explain. But the legs, now this had just developed 5 minutes prior, so completely overwhelmed I kind of just threw that in there after everything.
Now because I had been to Dr. Freeze a thousand times when nothing was actually wrong with me, he must have figured this was the same thing, and as always with him I didn't feel like he was taking me seriously.
He said it was probably from the B12 deficit, like I expected and redirected me to the hospital to have my blood looked at. He told me I couldn't eat or drink before that test, so I decided on the spot that I would go the very next morning. I left the office, staggering back to my car and I drove home. I was now seriously in panic mode 3.
I called work to explain what had happened and that I was coming in later the next day because I had to go do the blood work first.
My girlfriend tried to calm me down, saying it was probably nothing and to wait for the blood work. I was so scared that I decided to sleep on the couch, so I could watch TV when I couldn't sleep. Secretly I was also afraid to walk the stairs. What if I couldn't make it down the next morning? Since until then every symptom had progressed the next day.
Finally I fell asleep.
So, my legs are acting weird. My doctor's office is located on the fourth floor of a the building I'm walking towards. Usually I always take the stairs, even when I was suffering from a double pneumonia nothing could stop me from taking the stairs. This time, I didn't know what on earth was going on with my legs. I couldn't trust them, so I chose to take the elevator. I managed to reach the waiting room and literally crashed in to the first seat I came across.
As usual the doctor was running late due to previous appointments, but this was the first time that I actually didn't mind because I was not looking forward having to stand up again. But finally he opened his door and called me in. I grabbed hold of the table I was sitting on, using my (also sensory malfunctioning) hands to lift me out of the chair, walking to the doctor in some sort of a Jack Sparrow kind of walk. Shaking his hand, realizing this is the first time I shook someone's hand since the first time the pins and needles occurred, noticing that I couldn't give the firm hand I usually could, before continuing the Sparrow dance to his office.
This is where the usual act took place. He doesn't look at me, asks me what is wrong while immediately starting to type on his computer. If I didn't say anything yet, what the hell is he typing? Anyway... I had been dealing with the p&n for days now so I could explain quite well what I was experiencing, even though it was hard to find the right words. The ice curtain was pretty new so I found that hard to explain. But the legs, now this had just developed 5 minutes prior, so completely overwhelmed I kind of just threw that in there after everything.
Now because I had been to Dr. Freeze a thousand times when nothing was actually wrong with me, he must have figured this was the same thing, and as always with him I didn't feel like he was taking me seriously.
He said it was probably from the B12 deficit, like I expected and redirected me to the hospital to have my blood looked at. He told me I couldn't eat or drink before that test, so I decided on the spot that I would go the very next morning. I left the office, staggering back to my car and I drove home. I was now seriously in panic mode 3.
I called work to explain what had happened and that I was coming in later the next day because I had to go do the blood work first.
My girlfriend tried to calm me down, saying it was probably nothing and to wait for the blood work. I was so scared that I decided to sleep on the couch, so I could watch TV when I couldn't sleep. Secretly I was also afraid to walk the stairs. What if I couldn't make it down the next morning? Since until then every symptom had progressed the next day.
Finally I fell asleep.
Day V Part 2
I was counting on some traffic, so I arrived in my home town a little too early, which made me decide to go home first. It was on my way anyway and I wanted to change in to something more comfortable because you never know with doctors.
Since I was home anyway I figured I would test the curtain feeling once again. It appeared to have become worse. But maybe this was due to the heat of the sun, me being hotter so to speak. I got in my car to drive to the doctor's office. Still nothing else the matter at that particular point. How different things can be, 5 minutes later.
Because 5 minutes later I parked at the doctor's office and got out of my car. As soon as I stepped out of my car I noticed something was wrong. My legs felt weird, and I mean Weird with a capital W. It is incredibly hard for me to put in to words exactly what you are experiencing, just because the exact words for this doesn't seem to have been invented yet. It felt like all the power had gone from my legs, but also not. I could tell I still had all the strength in them, but I couldn't control them the way I used to.
The walk from the car to the door of the doctor's office is only like a hundred steps, but it felt like a marathon because with each step I could tell more positively that this also was something not temporary. It was like I was having trouble keeping my balance, while I could still walk. I could just tell something was wrong with them, but I couldn't (and clearly still can't) tell exactly what it was.
But hey, I was literally on the way to the doctor's office anyway, so what better time to have this happen than now.
Since I was home anyway I figured I would test the curtain feeling once again. It appeared to have become worse. But maybe this was due to the heat of the sun, me being hotter so to speak. I got in my car to drive to the doctor's office. Still nothing else the matter at that particular point. How different things can be, 5 minutes later.
Because 5 minutes later I parked at the doctor's office and got out of my car. As soon as I stepped out of my car I noticed something was wrong. My legs felt weird, and I mean Weird with a capital W. It is incredibly hard for me to put in to words exactly what you are experiencing, just because the exact words for this doesn't seem to have been invented yet. It felt like all the power had gone from my legs, but also not. I could tell I still had all the strength in them, but I couldn't control them the way I used to.
The walk from the car to the door of the doctor's office is only like a hundred steps, but it felt like a marathon because with each step I could tell more positively that this also was something not temporary. It was like I was having trouble keeping my balance, while I could still walk. I could just tell something was wrong with them, but I couldn't (and clearly still can't) tell exactly what it was.
But hey, I was literally on the way to the doctor's office anyway, so what better time to have this happen than now.
Day V
Feeling incredibly relieved, I woke up so early that Thursday August 25th. The p&n was now definitely progressing up my legs and arms. But I was still in the B12 mode so I didn't give it much attention.
It was the heart of summer, so even though it was early I could sit in the garden to drink some coffee before I went to work. I poured myself a cup of ambition and walked to the garden. Which was the moment the second symptom revealed itself to me.
Just when I stepped through the garden door, my arm brushed past the curtain that is next to the door (once it's opened). I almost jumped because it scared me. It felt like I had just touched a block of the coldest ice I had ever felt in my life. I put down my coffee on the garden table to inspect what on earth I had just touched. To my astonishment I found out that it could only have been the curtain. I touched the curtain with my hand, but that felt completely normal at that time. Sure, it was cool like a curtain usually is, but not cold. I decided to brush my arm past it again; pure ice.
This was the moment that I slowly shifted in to panic mode 2. Even though I was still pretty sure that it was the B12 deficit, may be even combined with some damage from the lifting, this was not normal and as far as I know this wasn't here before! That was the first time I really started to realize something might be very wrong.
Nevertheless I just went to work. But at work I experienced that feeling a couple times more due to my arm touching things or the other way around. I figured I'd better make that doctor's appointment after all. So I called the doctor's office and luckily Dr. Freeze could see me that very afternoon.
Because my manager was away on vacation, I walked by Human Resources. I asked them if it was OK if I left a little earlier again that day because I had to visit the doctor again. My literal words were 'My hands and feet have been tingling for 4 days now'. I saw the worry on the faces of the two HR ladies. They told me that of course that was OK, so I went.
It was the heart of summer, so even though it was early I could sit in the garden to drink some coffee before I went to work. I poured myself a cup of ambition and walked to the garden. Which was the moment the second symptom revealed itself to me.
Just when I stepped through the garden door, my arm brushed past the curtain that is next to the door (once it's opened). I almost jumped because it scared me. It felt like I had just touched a block of the coldest ice I had ever felt in my life. I put down my coffee on the garden table to inspect what on earth I had just touched. To my astonishment I found out that it could only have been the curtain. I touched the curtain with my hand, but that felt completely normal at that time. Sure, it was cool like a curtain usually is, but not cold. I decided to brush my arm past it again; pure ice.
This was the moment that I slowly shifted in to panic mode 2. Even though I was still pretty sure that it was the B12 deficit, may be even combined with some damage from the lifting, this was not normal and as far as I know this wasn't here before! That was the first time I really started to realize something might be very wrong.
Nevertheless I just went to work. But at work I experienced that feeling a couple times more due to my arm touching things or the other way around. I figured I'd better make that doctor's appointment after all. So I called the doctor's office and luckily Dr. Freeze could see me that very afternoon.
Because my manager was away on vacation, I walked by Human Resources. I asked them if it was OK if I left a little earlier again that day because I had to visit the doctor again. My literal words were 'My hands and feet have been tingling for 4 days now'. I saw the worry on the faces of the two HR ladies. They told me that of course that was OK, so I went.
Day IV
You can probably imagine the fact that I wanted to hit myself in the head when I woke up Wednesday August the 24th, for not making that marks on my body, when I thought once again the p&n had progressed upwards. You see it's not a steady feeling you can pinpoint (pun intended) on your body. It almost feels like it's not real. This is because you are feeling something that you are actually not feeling. The p&n are areas of your body that you actually do not feel, or feel different. But I will explain this in details later.
I went to work once again, but slowly I did start to feel alarmed. This was now the fourth day I was experiencing this and even though I was still positive that this was a result of the heavy lifting, I started to worry that I maybe suffered some permanent damage in stead of something temporary. And something that is progressing, even if I couldn't tell for sure, so slowly just couldn't be a very good thing.
Then I suddenly realized that I didn't get my shot for a while. I have been suffering from a vitamin B12 deficit for years now, and I require to get an injection every one or two months. And I hadn't been to the nurse for some months now to do so. Immediately I remembered (Dr. database, remember?) that a long period of B12 deficit can result in neurological and nerve related symptoms, just like the ones I was experiencing. Eureka! Of course, that must be it! So I immediately phoned my doctor's office and I could come and get one right away that afternoon.
I left home early to get my shot. I talked to the doctor's assistant, telling her my symptoms and asking her if she also thought this could be a result of the B12 deficit. She said that this was very well possible, but if I didn't trust it I should make an appointment with my actual doctor.
Well, I was positive, this must be it so the shot will make it all better soon. And I went home.
I went to work once again, but slowly I did start to feel alarmed. This was now the fourth day I was experiencing this and even though I was still positive that this was a result of the heavy lifting, I started to worry that I maybe suffered some permanent damage in stead of something temporary. And something that is progressing, even if I couldn't tell for sure, so slowly just couldn't be a very good thing.
Then I suddenly realized that I didn't get my shot for a while. I have been suffering from a vitamin B12 deficit for years now, and I require to get an injection every one or two months. And I hadn't been to the nurse for some months now to do so. Immediately I remembered (Dr. database, remember?) that a long period of B12 deficit can result in neurological and nerve related symptoms, just like the ones I was experiencing. Eureka! Of course, that must be it! So I immediately phoned my doctor's office and I could come and get one right away that afternoon.
I left home early to get my shot. I talked to the doctor's assistant, telling her my symptoms and asking her if she also thought this could be a result of the B12 deficit. She said that this was very well possible, but if I didn't trust it I should make an appointment with my actual doctor.
Well, I was positive, this must be it so the shot will make it all better soon. And I went home.
Day III
I woke up early on Tuesday August 23rd because I had gone to bed early that Monday evening, figuring that a little more bed rest would probably be the best thing.
First thing I noticed that Tuesday morning was that I was now certain that the p&n had intensified. And I could swear that they were expanding! It felt like they were now slowly creeping up my legs and arms, like a very slow moving army of tiny ants. I considered marking my legs and arms to document where the 'end' was at that time, so I had a way of comparing it in case it would remain to move. But for some reason I didn't. I guess in a way you are still in some kind of denial, I just kept figuring it would go away by itself.
I once again drove to work, having no further symptoms or problems and worked all day. Halfway through the day I did e-mail my girlfriend to tell her about the weird thing I was experiencing. She also thought it was a weird thing, but she is someone who doesn't panic much at all, so she probably also figured it was from the lifting, because I had fed that idea into her head.
In the evening I did start to get a little bit worried. It felt like it was increasing, and by now I thought it was taking a bit too long for my liking. I considered making a doctors appointment the next day, but because I had also been away from work sick two times already in the past six months, I figured I would wait to see if it would still be there in a couple of days.
I went to bed early again that day.
First thing I noticed that Tuesday morning was that I was now certain that the p&n had intensified. And I could swear that they were expanding! It felt like they were now slowly creeping up my legs and arms, like a very slow moving army of tiny ants. I considered marking my legs and arms to document where the 'end' was at that time, so I had a way of comparing it in case it would remain to move. But for some reason I didn't. I guess in a way you are still in some kind of denial, I just kept figuring it would go away by itself.
I once again drove to work, having no further symptoms or problems and worked all day. Halfway through the day I did e-mail my girlfriend to tell her about the weird thing I was experiencing. She also thought it was a weird thing, but she is someone who doesn't panic much at all, so she probably also figured it was from the lifting, because I had fed that idea into her head.
In the evening I did start to get a little bit worried. It felt like it was increasing, and by now I thought it was taking a bit too long for my liking. I considered making a doctors appointment the next day, but because I had also been away from work sick two times already in the past six months, I figured I would wait to see if it would still be there in a couple of days.
I went to bed early again that day.
Day II
Waking up on Monday August 22nd, even though the Pins and needles (p&n) appeared to have intensified (but I couldn't tell with 100% certainty due to the nature of those feelings), it didn't even alarm me enough to tell my girlfriend. This is remarkable, because normally I would even tell her when I had an aching hair. But I still figured it was from the heavy lifting, so I got in my car and drove the hour to work.
I worked as an IT Engineer for a large Dutch Television Facility provider. It had a very large building and since I assisted my colleagues on site, this required a lot of walking, including stairs. The p&n were clearer when I was using the limbs (so hands and feet) that were affected than when I was sitting down. Due to the many walks at my work, I was confronted by it all day long. It bothered me, but still didn't really alarm me.
Not least because I knew so many diseases and their symptoms. I didn't know of any diseases that caused this particular symptom, so I was still positive that I had bruised a nerve or something.
Even when I got home that day I didn't consider it important enough to tell my girlfriend.
I worked as an IT Engineer for a large Dutch Television Facility provider. It had a very large building and since I assisted my colleagues on site, this required a lot of walking, including stairs. The p&n were clearer when I was using the limbs (so hands and feet) that were affected than when I was sitting down. Due to the many walks at my work, I was confronted by it all day long. It bothered me, but still didn't really alarm me.
Not least because I knew so many diseases and their symptoms. I didn't know of any diseases that caused this particular symptom, so I was still positive that I had bruised a nerve or something.
Even when I got home that day I didn't consider it important enough to tell my girlfriend.
Day I
With my immune system getting a little less good than I was used to, I also slowly got rid of the hypochondria. I still had those fears, but I managed to keep them under control. Even when my heart skipped a beat (or 50), I managed to not panic. So at least something good came from it.
Sunday, August 21st 2016. My brother had just bought a new house and there was a lot of stuff like wood, curtains etc. still on the attic. He asked me if I could help him move it from there. As I have a fear of heights, he was on the attic (which you had to climb on/in) and handed me the stuff, so I lifted quite some weight that day. You can understand that after a day of doing that I was quite exhausted when I finally came home that Sunday.
I sat down behind my computer to make some music, at around 9pm. This is when I first noticed that my hands were tingling. It kind of felt like that feeling we all know when your hand is sleeping, but also not quite. It felt different. Also, it was both my hands, which I found interesting, but not yet alarming.
Then about an hour later, my feet started tingling as well. When you read about GBS, you will find the phrase 'Pins and needles (p&n)' a lot. All though this doesn't describe the actual feeling accurately, it's the closest you get because there simply are no words to describe exactly what you feel (or rather do not feel).
This is an example of where me being a walking medical database had an influence.
So now both my hands and both my feet were experiencing pins and needles. Had this happened 10 years prior, I immediately would have thought that I had something like a tumor or anything else that was terrible. Because the last couple of years I managed to get this under control I simply figured; Look, I lifted a great deal of heavy things from over my head, two flights of stairs down. I probably bruised something in my neck or back, it made perfect sense, I mean the timing was perfect, in a bad way, because I had an explanation. But no.
Sunday, August 21st 2016. My brother had just bought a new house and there was a lot of stuff like wood, curtains etc. still on the attic. He asked me if I could help him move it from there. As I have a fear of heights, he was on the attic (which you had to climb on/in) and handed me the stuff, so I lifted quite some weight that day. You can understand that after a day of doing that I was quite exhausted when I finally came home that Sunday.
I sat down behind my computer to make some music, at around 9pm. This is when I first noticed that my hands were tingling. It kind of felt like that feeling we all know when your hand is sleeping, but also not quite. It felt different. Also, it was both my hands, which I found interesting, but not yet alarming.
Then about an hour later, my feet started tingling as well. When you read about GBS, you will find the phrase 'Pins and needles (p&n)' a lot. All though this doesn't describe the actual feeling accurately, it's the closest you get because there simply are no words to describe exactly what you feel (or rather do not feel).
This is an example of where me being a walking medical database had an influence.
So now both my hands and both my feet were experiencing pins and needles. Had this happened 10 years prior, I immediately would have thought that I had something like a tumor or anything else that was terrible. Because the last couple of years I managed to get this under control I simply figured; Look, I lifted a great deal of heavy things from over my head, two flights of stairs down. I probably bruised something in my neck or back, it made perfect sense, I mean the timing was perfect, in a bad way, because I had an explanation. But no.
Wednesday, December 13, 2017
Introduction IV
The year I turned 39 (2016), was a bad health year for me. If you have read my entire story, you will understand in retrospect that this is the understatement of the year, but also before the 'big event' I had all kinds of small and large problems. Things like colds lining up, like the next one started before the former one was even gone. I had respiratory problems coming and going, leading in to once again an infection which luckily was quickly under control.
But then I got laryngitis (a throat infection). I've had a sore throat many times in the past, even so bad that I actually thought I had had laryngitis before. Well, if you have had laryngitis you will understand me when I say, when you have it, you will know it! It developed so quickly, over the course of like 3 or 4 days and it turned so bad that I couldn't swallow anymore. That was a frightening experience to me. So I went to my buddy the doctor again,
I'm going to name him Dr. Freeze in the rest of my story. Partly because it's a literal translation from his last name in Dutch, and because i always found him cold as ice.
Dr. Freeze gave me another batch of antibiotics, which worked miraculously fast. Within three days the infection was completely gone. I seriously thought I had caught a break for the first time in a long, long time. Little did I know that it was this laryngitis which was the trigger for something much, much worse in the near future.
But then I got laryngitis (a throat infection). I've had a sore throat many times in the past, even so bad that I actually thought I had had laryngitis before. Well, if you have had laryngitis you will understand me when I say, when you have it, you will know it! It developed so quickly, over the course of like 3 or 4 days and it turned so bad that I couldn't swallow anymore. That was a frightening experience to me. So I went to my buddy the doctor again,
I'm going to name him Dr. Freeze in the rest of my story. Partly because it's a literal translation from his last name in Dutch, and because i always found him cold as ice.
Dr. Freeze gave me another batch of antibiotics, which worked miraculously fast. Within three days the infection was completely gone. I seriously thought I had caught a break for the first time in a long, long time. Little did I know that it was this laryngitis which was the trigger for something much, much worse in the near future.
Introduction III
When I got into my thirties, my immune system appeared to suffer some cracks here and there. I honestly have no idea if this is related to what happened to me eventually, but I find it worth mentioning nevertheless. If I give you the story, I want to give you the entire story.
I know it's also a known part of getting older, but I simply wasn't used to it. This also made me not take these things very seriously. Yes, every shot of pain made me think I was dying, but the cold and the flu didn't bother me. The irony, I know.
When I was about 35, forgive me for not knowing the exact time anymore, I suffered my first pneumonia. It was caught quite fast and with some antibiotics I recovered quite fast. The lasting symptoms like fatigue didn't bother me too much at that time.
But then when I was 38, I suffered a severe double pneumonia, together with a week of fever of a 104 (40,5). It took the antibiotics a long time to conquer whatever it was that was attacking my body. The aftermath was even worse, I was so tired and weak that it took months before I was working at full force again. Thankfully my employer at the time and the company doctor did everything in their power to assist me in the best way they could. No pressure was put on me, to the extend that I wanted to start working again sooner than they deemed me fit.
Then I turned 39...
I know it's also a known part of getting older, but I simply wasn't used to it. This also made me not take these things very seriously. Yes, every shot of pain made me think I was dying, but the cold and the flu didn't bother me. The irony, I know.
When I was about 35, forgive me for not knowing the exact time anymore, I suffered my first pneumonia. It was caught quite fast and with some antibiotics I recovered quite fast. The lasting symptoms like fatigue didn't bother me too much at that time.
But then when I was 38, I suffered a severe double pneumonia, together with a week of fever of a 104 (40,5). It took the antibiotics a long time to conquer whatever it was that was attacking my body. The aftermath was even worse, I was so tired and weak that it took months before I was working at full force again. Thankfully my employer at the time and the company doctor did everything in their power to assist me in the best way they could. No pressure was put on me, to the extend that I wanted to start working again sooner than they deemed me fit.
Then I turned 39...
Introduction II
Ironically, because I hardly ever got sick, I developed hypochondria. Hypochondria (or officially: Hypochondriasis) is the fear of getting, or having, a serious (mostly lethal in my case) disease, disorder etc. You might wonder what on earth this has to do with the main subject of my Blog (GBS), but trust me, in my case this matters.
Whenever I felt a pinch in my stomach, short chest pains, or anything I couldn't (or even could) explain, I was positive that something was very, very wrong and nobody could tell me otherwise. This is also the time I started Googling for symptoms. I can tell you from experience that this is not always a very well thing to do, because you always appear to find the worst possible outcome, while often your fear is based on nothing. Not always, because in my case you will find that sometimes it does indeed come in hand.
One of the 'symptoms' of hypochondria, or at least for me, is that you look everything up on the Internet. As a side effect of doing so, over time you become a medical professional. At least you tend to think so and so do people around you. Even though I can not emphasize enough that you should always visit a real doctor, and I have no official medical education, sometimes people would ask me 'I have these symptoms, what could it be?'. Often I knew what it could be, but I would always suggest them to go to a doctor.
Because of the fear, amplified by the findings on the Internet, I developed panic attacks and hyperventilation. I've been to my doctor over a hundred times (not exaggerated) and in the end he didn't even look at me anymore because he assumed it was another one of my episodes. Now I can understand this, but if any practitioner is reading this, please promise me that no matter how hard it can be, to treat each visit as a new one. Because my story will prove to you that one out of a hundred visits can be the one that is serious. And in my case it was very, very serious.
Whenever I felt a pinch in my stomach, short chest pains, or anything I couldn't (or even could) explain, I was positive that something was very, very wrong and nobody could tell me otherwise. This is also the time I started Googling for symptoms. I can tell you from experience that this is not always a very well thing to do, because you always appear to find the worst possible outcome, while often your fear is based on nothing. Not always, because in my case you will find that sometimes it does indeed come in hand.
One of the 'symptoms' of hypochondria, or at least for me, is that you look everything up on the Internet. As a side effect of doing so, over time you become a medical professional. At least you tend to think so and so do people around you. Even though I can not emphasize enough that you should always visit a real doctor, and I have no official medical education, sometimes people would ask me 'I have these symptoms, what could it be?'. Often I knew what it could be, but I would always suggest them to go to a doctor.
Because of the fear, amplified by the findings on the Internet, I developed panic attacks and hyperventilation. I've been to my doctor over a hundred times (not exaggerated) and in the end he didn't even look at me anymore because he assumed it was another one of my episodes. Now I can understand this, but if any practitioner is reading this, please promise me that no matter how hard it can be, to treat each visit as a new one. Because my story will prove to you that one out of a hundred visits can be the one that is serious. And in my case it was very, very serious.
Thursday, November 30, 2017
Introduction I
Introduction
Hello, thank you for visiting my blog. Allow me to start by introducing myself, and my story. Because you ended up here, I assume that you kind more or less know what it is about, but for my story I'm going to assume that you don't know anything about me, or about GBS in general (yes, I will explain what it is soon).
My name is René, at this moment I don't feel the need to say my last name. Not that it is a big secret, but I simply don't see the added value of that at the moment. I might change my mind later, depending on if I get reactions etc.
I'm 40 years old at the time I write this, I was born in 1977. At school I always thought I wanted to end up in IT, which was a rising field of work at the time. And I happened to be quite good at it too, having a dad who was a Systems Engineer, teaching me all the basics and more. I studied to be a Systems Engineer too, and started working as one by the time I was 19.
I was a strong boy. When I was a child, I used to be sick all the time. I had a very weak immune system, but also I was a nervous child who would get sick from just being too nervous for his birthday, Christmas, you name it. I spent a lot of those happy moments either in bed, or trying to keep myself up.
After my toddler age that all went away. I've always felt that being sick so often as a young child had boosted my immune system in such a way that I was mister unbreakable for long after that. And for a long time after that this indeed appeared to be the case. I rarely got sick. Of course I got the cold sometimes, like anyone else, but it never made me sick enough to be in bed all day or stay home from work.
I'm 40 years old at the time I write this, I was born in 1977. At school I always thought I wanted to end up in IT, which was a rising field of work at the time. And I happened to be quite good at it too, having a dad who was a Systems Engineer, teaching me all the basics and more. I studied to be a Systems Engineer too, and started working as one by the time I was 19.
I was a strong boy. When I was a child, I used to be sick all the time. I had a very weak immune system, but also I was a nervous child who would get sick from just being too nervous for his birthday, Christmas, you name it. I spent a lot of those happy moments either in bed, or trying to keep myself up.
After my toddler age that all went away. I've always felt that being sick so often as a young child had boosted my immune system in such a way that I was mister unbreakable for long after that. And for a long time after that this indeed appeared to be the case. I rarely got sick. Of course I got the cold sometimes, like anyone else, but it never made me sick enough to be in bed all day or stay home from work.
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