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.
Interesting conversation with Mom - Nobody gets it
Blog entry posted by lnester7, Aug 29, 2017.