I went to this hotdog party they had here yesterday. I was so incredibly sick the night before and right up until the last minute, I didn't even think I'd be able to make it there. But somehow, I did it. And the most frustrating thing was that I couldn't volunteer to help setup the table or help layout the food. I was raised to always ask to help. It's just a natural thing with me. And I was sitting there watching them, and I couldn't volunteer. I was afraid of triggering a bad attack of POTS if I did alot of standing and bending. Or using up too much energy and not being able to make it back to my apartment. So I just sat there, and the main woman who was doing alot of it looked at me a few times, and I felt like she was wondering why I didn't help. It was so frustrating.
That's been one of the worst things for me. I want to do so much, but I can't. There are a million things I'd be doing if I were well. And this disease will not allow me to do anything. I get maybe one to four days in a year that I feel like I could do something, the rest of the year, I'm ninety eight percent housebound. I make it to do my grocery shopping or go to the doctor. That's about it. There is no life. Once in awhile my friend takes me out to eat, but I'm usually flared up wherever we go and it's very hard on me to be around alot of people in a restaurant. And then I pay in spades for whatever we did for days and days.
I'm paying for going yesterday. And I paid all night for it. I just wish there was an end to this. I want my life back.
I had to resort to taking codeine last night for the pain, and it didn't do anything for it. I might as well have taken water. I don't understand why there aren't more effective and safe pain relievers out there. They pump out crappy drugs all the time, but we never hear of new, safer pain killers. The biologics are not safe. I've seen first hand what those do. I've tried most narcs, they do nothing for this. And the NSAIDS just ruin my stomach and give me heart problems. We need more effective, safe things we can take for pain and flare ups.
That's been one of the worst things for me. I want to do so much, but I can't. There are a million things I'd be doing if I were well. And this disease will not allow me to do anything. I get maybe one to four days in a year that I feel like I could do something, the rest of the year, I'm ninety eight percent housebound. I make it to do my grocery shopping or go to the doctor. That's about it. There is no life. Once in awhile my friend takes me out to eat, but I'm usually flared up wherever we go and it's very hard on me to be around alot of people in a restaurant. And then I pay in spades for whatever we did for days and days.
I'm paying for going yesterday. And I paid all night for it. I just wish there was an end to this. I want my life back.
I had to resort to taking codeine last night for the pain, and it didn't do anything for it. I might as well have taken water. I don't understand why there aren't more effective and safe pain relievers out there. They pump out crappy drugs all the time, but we never hear of new, safer pain killers. The biologics are not safe. I've seen first hand what those do. I've tried most narcs, they do nothing for this. And the NSAIDS just ruin my stomach and give me heart problems. We need more effective, safe things we can take for pain and flare ups.