Interesting conversation with Mom - Nobody gets it

So I was talking to mom, and I said "I am tired today" and she said something, which I replied. "Unfortunately CFS does not kill you that easy, so stop worrying every time I crash, you cannot get this worked up about it"

She said but you are being so negative, you have to fight, do not give up...... blah blah
I said mom " I am not being negative, or giving up, I am telling you that as a fact, I feel so in peace with this situation I really do not dwell or like get desperate, but I have suffered to a point where I can certainly say "death is not the worst thing that can happen in live". You just have had to be there, to feel this certainty of what "live" really means.
I told her "if somebody now says to me, here is this pill, you have 50/50% chance of being alive or being dead, I would take it without hesitation, I am telling you this because I will get more aggressive with treatment. I will take more risks since I had tried all treatment of low risks. Now if I have to nuc my body, I will do it."

I don't know if I am the only one, So if somebody tells me do the ritux or cyclo or some nasty drug that can kill you or cure you, I would not hesitate, It is because I appreciate life (real living) that I can say that with peace and a clear mind.
But I think only another CFSer would understand this. So I feel kind of dumb to even share that with her, because she might think I am like down or blue or something. I remember the days where my brain was on fire and my spine, and I would drop on my knees and pray for 3 seconds of relieve, so I could breath and keep going.
Who the heck wants to live that way! The kind of suffering that I had with this disease, just made me matter of factly appreciate life, and I just have a different perspective of death I guess. If I have to choose being real dead vs being dead alive. I will choose death but I am not being like sad or suicidal, just factual.

Gosh I hope this makes sense to somebody and is not taken in a bad way.


I understand your feelings. Death does not scare me, either.

However, don't forget that one possibility of trying a new treatment is that your symptoms might get worse.

Death does not scare me but getting a lot worse - having lots more pain or nausea, being unable to get out of bed at all, being unable to feed myself - those are the type of things that I would like to avoid.

I have no idea what the side effects and risks are when it comes to various experimental drugs. And my comment should not be considered medical advice! I just wanted to mention the general possibility that sometimes trying a new drug can make you feel even worse, but still alive.

Just something to consider. I wish there was an easier answer for ME/CFS patients.
The way I put it some twenty five years ago was that if I had a pill that would cure me now but I would die in five years I would take it.

About five years ago I also said I have no fear of death. I fear dying, but not death.

Its fully understandable to me. Life is wonderful, and a chance at a real life with a high risk of death, if other less risky things have been tried, is better than the unending problems we have. So faced with a one in one thousand risk of death on RItuximab from long term use, or the high risk of an adverse reaction from it, maybe ten percent, that will cause them to not allow its use any more, then so what? I will have tried something. Just the hope from being able to do that is helpful. (We might know in less than two months at least an outline of how the phase 3 Rituximab trials went.) Cyclophosphamide is the same. Experimental drugs, the same. Why would't people who have a low quality of life be willing to try things? Its not just the dying who need compassionate use of risky medicine.
I think this is an important point to make ,to illustrate what risks, we as a population we are willing to take, so we get offered options of treatment, I say this because I hear doctors (or people) saying ohhh no that treatment can have very serious side effects, it works but is too dangerous, as in the case of ritux and like the FDA situation with (I forgot the name by now) but anyways the point is. I don't care if it kills me offer me a chance to be well even if the other side of the coin is ugly.
Wow, I can relate to everyone here. Trying something new is always a risk. But not sure I want to risk getting worse on a hunch I would get better. 2017 has been a firestorm of symptoms. The only reasuring thing out of all that, is I didnt take anything to percipitate it. If my body can feel this shitty on its own, then I have more faith that it can feel better.

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