Since people commonly misunderstand my disease I've decided to write a bit about my personal experience with suffering Chronic Fatigue Syndrome. Hopefully this will help you all understand not only the disease but also me because it can very much take it's toll on who I am.
I was diagnosed with Chronic Fatigue Syndrome a number of years ago. It took about two years of many tests and a handful of doctors before I finally met a doctor who could give me some explanation to what I was feeling.
Prior to being on about 10-18 pills daily the pain was near unbearable. See, Chronic Fatigue Syndrome is a lot more then just being always tired. I've suffered extreme migraines on a daily basis, light-headed dizzyness that often resulted in not so funny almost face plants and run ins with my walls. Along with that I also have trouble concentrating, confusing numbers and words, short term memory, leg/muscle cramps, severe stomach pain (cramping), the occasional annoying muscle twitch, and the list even goes on.
See, Chronic Fatigue Syndrome is a bunch of things all thrown together. To elaborate, part of it is Irritable Bowel Syndrome which was and is causing the pain in my stomach. I also have Ehlers-Danlos Syndrome. I know it all sounds greek so to put it simply ED is a disease of the connective tissues. In my case my skin is extremely pale, to the point where I've been called 'transparent'. Along with that I am able to stretch my eyelids a fair amount and bend my thumb back completely against my hand. It might not sound so bad but due to this I have severe scarring in the form of violent stretch marks. Now, I'm not the thinnest person in the world but I can tell you that these aren't just 'oh she gained a couple pounds' stretch marks. Another downer to ED is that I have weak blood vessels and it's been explained to me that when I stand up and the blood goes downwards, into my legs for example, the veins just keep expanding and stretching instead of being a solid vessel for the blood.
To say that this is all just the surface would be an understatement. Often times I ask myself how could it happen and to me of all people. On a trip to Baltimore, Maryland where I visited a doctor specializing in CFS we were able to pin point that due to the fact that CFS is a post-viral disease, mine came after a month of undiagnosed Pneumonia that resulted in a hospital stay.
Socially I have very little friends and I don't get to do things very often. When I do go out and do things I end up paying dearly in the form of barely being able to get out of bed for up to a week or so after a night of fun. I've had to be home schooled because the environment is just too loud and bright for my head. It's hardly fair but it's life.
As I said many people misunderstand it and I don't blame them but among other names I've been told I have 'Lazy ass syndrome'. It's a shame that they will likely never understand no matter how much I try to explain it to them, at least not until they've grown and matured but there's nothing I can do.
If you've gotten this far, thank you.
I was diagnosed with Chronic Fatigue Syndrome a number of years ago. It took about two years of many tests and a handful of doctors before I finally met a doctor who could give me some explanation to what I was feeling.
Prior to being on about 10-18 pills daily the pain was near unbearable. See, Chronic Fatigue Syndrome is a lot more then just being always tired. I've suffered extreme migraines on a daily basis, light-headed dizzyness that often resulted in not so funny almost face plants and run ins with my walls. Along with that I also have trouble concentrating, confusing numbers and words, short term memory, leg/muscle cramps, severe stomach pain (cramping), the occasional annoying muscle twitch, and the list even goes on.
See, Chronic Fatigue Syndrome is a bunch of things all thrown together. To elaborate, part of it is Irritable Bowel Syndrome which was and is causing the pain in my stomach. I also have Ehlers-Danlos Syndrome. I know it all sounds greek so to put it simply ED is a disease of the connective tissues. In my case my skin is extremely pale, to the point where I've been called 'transparent'. Along with that I am able to stretch my eyelids a fair amount and bend my thumb back completely against my hand. It might not sound so bad but due to this I have severe scarring in the form of violent stretch marks. Now, I'm not the thinnest person in the world but I can tell you that these aren't just 'oh she gained a couple pounds' stretch marks. Another downer to ED is that I have weak blood vessels and it's been explained to me that when I stand up and the blood goes downwards, into my legs for example, the veins just keep expanding and stretching instead of being a solid vessel for the blood.
To say that this is all just the surface would be an understatement. Often times I ask myself how could it happen and to me of all people. On a trip to Baltimore, Maryland where I visited a doctor specializing in CFS we were able to pin point that due to the fact that CFS is a post-viral disease, mine came after a month of undiagnosed Pneumonia that resulted in a hospital stay.
Socially I have very little friends and I don't get to do things very often. When I do go out and do things I end up paying dearly in the form of barely being able to get out of bed for up to a week or so after a night of fun. I've had to be home schooled because the environment is just too loud and bright for my head. It's hardly fair but it's life.
As I said many people misunderstand it and I don't blame them but among other names I've been told I have 'Lazy ass syndrome'. It's a shame that they will likely never understand no matter how much I try to explain it to them, at least not until they've grown and matured but there's nothing I can do.
If you've gotten this far, thank you.
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