- Messages
- 16
Hi folks,
I am a 56 year old ME patient of some 12 years. It started manifesting during a period of my life when I was having repeated severe issues with diverticulitis. This went on for 3 years of multiple visits to the ER in severe pain with severe gastro upset and a high fever. I would get admitted to the hospital, they would do LOTS of tests then send me home after 5 days with a shrug and a bag full of meds. During this time I was noticing that I was running low on energy but I attributed it to being sick. Now I think back and ponder if the ME started back then.
Eventually I went to a surgeon to see about getting a colon resection. He did yet another colonoscopy and decided yes I needed 12 inches of my colon removed. He did the surgery the following week. It took 9 days for my digestive system to start up again. This should have happened in less than 5 days.
After a successful relaunch of the gut I was sent home to bed rest with light exercise while it all healed. Two weeks later at 2:30am I was abruptly awakened to a pulmonary embolism. There I was drowning in air, in my birthday suit, with a room full of paramedics. WTF!!! That Sucked! The air! Right out of Me! So off we went back to the ER.
Blood thinners for months. Lovenox is Love a NOT!
Then came pneumonia. That sucked for two ugly weeks too....
But I eventually got well enough to return to my high stress IT job that I loved but was outsourced just as I came back to work. Oh gee more stress... And I was noticing that my batteries were not getting charged. I never really had the same "Type A Driven Goal Oriented Self" that I used to be prior to the surgery. I could barely remember what I was supposed to do each day. Try as I may with a garage full of human powered outdoor happiness toys I could not get going. Somehow I was operating on 1/4 power at best. Too long after the surgery to be related to that. I was ALWAYS runnin on empty. And where the hell did this relentless brain fog come from????!!!!
And something else started happening, when I went to the bathroom, either/or, afterwards, randomly, I would get a severe case of that bottom of the gut nausea so bad I would melt energetically. Like someone plugged a shop vac into my chest and sucked all the energy right out of me. This is a massive hit to my energy levels. I would sit in meetings at work after a quick stop in the men's room and suddenly crash, HARD, in front of my peers. And it continues randomly to this day on top of my ME symptoms.
None of my doctors (including The Mayo Clinic in Scottsdale AZ) have a clue about how voiding my system randomly causes a severe energetic crash. We postulate that it might be related to ME messing with my vasovagal nerve but that's pure speculation at this point. I don't know, the doctors don't know.
These crashes ruin a day. It ruins it for me. It ruins it for my family and friends. It scares me and my close family/friends when it happens. And it ruins it for any hope of staying gainfully employed. And it pisses me off. This is on top of the ME crashes due to doing too much because I have no freakin idea each morning just WHERE the freakin cliff is going to be, today....
So between the random crashes, and the lethargy and the brain fog of ME I'm stuck in purgatory it seems. I make the best of my situation. I live as best I can. But I'm sure not the "ME" I used to be.
And I'm still me inside, that TYPE A Driven Goal Oriented dude. So I'm prone to doing too much by my very nature.
So, why the hell did I just type all that? I want to know if there is anyone else out there with a similar variation on the whole ME experience???? If so please let me know!
I am a 56 year old ME patient of some 12 years. It started manifesting during a period of my life when I was having repeated severe issues with diverticulitis. This went on for 3 years of multiple visits to the ER in severe pain with severe gastro upset and a high fever. I would get admitted to the hospital, they would do LOTS of tests then send me home after 5 days with a shrug and a bag full of meds. During this time I was noticing that I was running low on energy but I attributed it to being sick. Now I think back and ponder if the ME started back then.
Eventually I went to a surgeon to see about getting a colon resection. He did yet another colonoscopy and decided yes I needed 12 inches of my colon removed. He did the surgery the following week. It took 9 days for my digestive system to start up again. This should have happened in less than 5 days.
After a successful relaunch of the gut I was sent home to bed rest with light exercise while it all healed. Two weeks later at 2:30am I was abruptly awakened to a pulmonary embolism. There I was drowning in air, in my birthday suit, with a room full of paramedics. WTF!!! That Sucked! The air! Right out of Me! So off we went back to the ER.
Blood thinners for months. Lovenox is Love a NOT!
Then came pneumonia. That sucked for two ugly weeks too....
But I eventually got well enough to return to my high stress IT job that I loved but was outsourced just as I came back to work. Oh gee more stress... And I was noticing that my batteries were not getting charged. I never really had the same "Type A Driven Goal Oriented Self" that I used to be prior to the surgery. I could barely remember what I was supposed to do each day. Try as I may with a garage full of human powered outdoor happiness toys I could not get going. Somehow I was operating on 1/4 power at best. Too long after the surgery to be related to that. I was ALWAYS runnin on empty. And where the hell did this relentless brain fog come from????!!!!
And something else started happening, when I went to the bathroom, either/or, afterwards, randomly, I would get a severe case of that bottom of the gut nausea so bad I would melt energetically. Like someone plugged a shop vac into my chest and sucked all the energy right out of me. This is a massive hit to my energy levels. I would sit in meetings at work after a quick stop in the men's room and suddenly crash, HARD, in front of my peers. And it continues randomly to this day on top of my ME symptoms.
None of my doctors (including The Mayo Clinic in Scottsdale AZ) have a clue about how voiding my system randomly causes a severe energetic crash. We postulate that it might be related to ME messing with my vasovagal nerve but that's pure speculation at this point. I don't know, the doctors don't know.
These crashes ruin a day. It ruins it for me. It ruins it for my family and friends. It scares me and my close family/friends when it happens. And it ruins it for any hope of staying gainfully employed. And it pisses me off. This is on top of the ME crashes due to doing too much because I have no freakin idea each morning just WHERE the freakin cliff is going to be, today....
So between the random crashes, and the lethargy and the brain fog of ME I'm stuck in purgatory it seems. I make the best of my situation. I live as best I can. But I'm sure not the "ME" I used to be.
And I'm still me inside, that TYPE A Driven Goal Oriented dude. So I'm prone to doing too much by my very nature.
So, why the hell did I just type all that? I want to know if there is anyone else out there with a similar variation on the whole ME experience???? If so please let me know!
i love your story telling style (garage full of toys hehe).