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To get back to Rituximab, I really think each person has to do a cost-benefit analysis for themselves. By 'costs' I don't just mean financial costs, just as I am obviously not talking about financial benefits alone. And it all boils down to how sick you are. @Sidereal talked about this earlier, and I want to add a few of my thoughts on this.
First of all, I think it is almost impossible for people with milder CFS to relate to those with severe/very severe CFS. When I first got sick, I thought it was bad. Yet I could still finish my dissertation and get a job. When I first had to go on long-term disability, I could still take care of myself and my dog. Yet I was approved for disability without a problem. I lost a lot of income because of it, but that was the cost of my pushing myself too hard.
Anyways, at that point, I couldn't imagine getting much sicker. In the back of my head I must have thought that I was just tougher than bedridden patients. Have I learned my lesson (and paid for my backheaded hubris) the hard way!!! Most, if not all, of us are tough and try to pretend being healthy as much as possible instead of pretending to be sick (I read this somewhere else and found it very fitting). As @Sidereal put it more eloquently, it's unbelievable and unimaginable how much worse things can get with ME/CFS unless you've been there yourself.
After my trying to return to work ended in my getting catastrophically worse, I am finally aware of how bad this illness can get. I am also aware of the few things I still can do and don't take them for granted. Such as typing this post (lying down, of course, in darkened room) or being able to walk to the bathroom as often as needed and the kitchen as often as necessary to not become too underweight. I can still talk on the phone to one person a day for up to 30 minutes almost every day and watch a movie (at my house) with a friend about once a month. I can sit up for about 30 minutes on most days. Sometimes more, oftentimes less. So I am much better than Rebecca was when she tried RTX, but I am definitely at a point where death doesn't scare me at all. It's living like this or worse for the next 40 or so years that scares the 'TMI' out of me.
Would I try RTX if offered by someone with experience in using it? I think I would. My biggest fear would be of getting sicker than I am now, in which case I would probably need full-time care, an IV feeding tube, and other than that live in complete isolation. In that case I would probably try to find a way to end my suffering forever. And we all know that quite a few of us have gone that route. Certainly more than 1 in 25,000 very severely ill patients.
But the potential upside is so much bigger! I would be grateful for any improvement. To think I could get to 50% or 80% of my pre-illness activity levels is, actually, something I can't even imagine at this point. Being able to take my dog for a 30 minute walk every day would already mean the world to me (especially because I live five minutes away from the beach!). Anything beyond that seems too unreal.
This post has already gotten way too long for my abilities, so I will have to leave it at this for now.
First of all, I think it is almost impossible for people with milder CFS to relate to those with severe/very severe CFS. When I first got sick, I thought it was bad. Yet I could still finish my dissertation and get a job. When I first had to go on long-term disability, I could still take care of myself and my dog. Yet I was approved for disability without a problem. I lost a lot of income because of it, but that was the cost of my pushing myself too hard.
Anyways, at that point, I couldn't imagine getting much sicker. In the back of my head I must have thought that I was just tougher than bedridden patients. Have I learned my lesson (and paid for my backheaded hubris) the hard way!!! Most, if not all, of us are tough and try to pretend being healthy as much as possible instead of pretending to be sick (I read this somewhere else and found it very fitting). As @Sidereal put it more eloquently, it's unbelievable and unimaginable how much worse things can get with ME/CFS unless you've been there yourself.
After my trying to return to work ended in my getting catastrophically worse, I am finally aware of how bad this illness can get. I am also aware of the few things I still can do and don't take them for granted. Such as typing this post (lying down, of course, in darkened room) or being able to walk to the bathroom as often as needed and the kitchen as often as necessary to not become too underweight. I can still talk on the phone to one person a day for up to 30 minutes almost every day and watch a movie (at my house) with a friend about once a month. I can sit up for about 30 minutes on most days. Sometimes more, oftentimes less. So I am much better than Rebecca was when she tried RTX, but I am definitely at a point where death doesn't scare me at all. It's living like this or worse for the next 40 or so years that scares the 'TMI' out of me.
Would I try RTX if offered by someone with experience in using it? I think I would. My biggest fear would be of getting sicker than I am now, in which case I would probably need full-time care, an IV feeding tube, and other than that live in complete isolation. In that case I would probably try to find a way to end my suffering forever. And we all know that quite a few of us have gone that route. Certainly more than 1 in 25,000 very severely ill patients.
But the potential upside is so much bigger! I would be grateful for any improvement. To think I could get to 50% or 80% of my pre-illness activity levels is, actually, something I can't even imagine at this point. Being able to take my dog for a 30 minute walk every day would already mean the world to me (especially because I live five minutes away from the beach!). Anything beyond that seems too unreal.
This post has already gotten way too long for my abilities, so I will have to leave it at this for now.
