POTS
Karma sucks. On Friday I had a consult with a cardiogist who specialises in irregular heart beats - Arrythmias. I told him my story, he did some tests and gave me a diagnosis. No, I didn't tell him my LJ user name. I've got POTS - Postural Orthostatic Tachycardia Syndrome. This is why I fell down in Paris - my brain wasn't getting enough blood so I fainted. There is not a lot known about why people get POTS, but it's probably an auto-immune disorder, post viral infection.
This is why I'm so damn tired all the time, why I feel better lying down, why my brain doesn't work the way it used to, why I have a headache every day and why I can't do bugger all.
There is no cure, it may go away. I'm in my 3rd year of this, in some cases it resolves in 3-5 years. There are some medications that may reduce the symptoms. I have to add lots of salt to my diet, drink lot of fluid, and try to exercise. The latter is a bit of a problem as the more I exert myself, the worse I feel. On Friday, I drove for 90 minutes each way, sat in a doctor's waiting room for an hour, then in the consult room for another 45 minutes. I did some grocery shopping since I was out and about, using the motorised cart so I didn't have to walk all over the huge store. Result, I spent the next 36 hours in horrific pain, and fatigue. I had to book off going to work, again.
I should be happy that I have a diagnosis. I should be happy that I don't have cancer. I should be optimistic that the pills may help me. I'm not happy. For the past three years my life has become narrower each day. I want to do things that I can't. I'm sad, I'm broke, I'm lonely. I can't get out without paying for it with pain and disabilty out of proportion to the exertion.
What makes this all so much harder is that I look perfectly normal on the outside. It's invisible.
This is why I'm so damn tired all the time, why I feel better lying down, why my brain doesn't work the way it used to, why I have a headache every day and why I can't do bugger all.
There is no cure, it may go away. I'm in my 3rd year of this, in some cases it resolves in 3-5 years. There are some medications that may reduce the symptoms. I have to add lots of salt to my diet, drink lot of fluid, and try to exercise. The latter is a bit of a problem as the more I exert myself, the worse I feel. On Friday, I drove for 90 minutes each way, sat in a doctor's waiting room for an hour, then in the consult room for another 45 minutes. I did some grocery shopping since I was out and about, using the motorised cart so I didn't have to walk all over the huge store. Result, I spent the next 36 hours in horrific pain, and fatigue. I had to book off going to work, again.
I should be happy that I have a diagnosis. I should be happy that I don't have cancer. I should be optimistic that the pills may help me. I'm not happy. For the past three years my life has become narrower each day. I want to do things that I can't. I'm sad, I'm broke, I'm lonely. I can't get out without paying for it with pain and disabilty out of proportion to the exertion.
What makes this all so much harder is that I look perfectly normal on the outside. It's invisible.