Post Crash Clarity

[linusbert]

Que sera sera

I feel like hope is toxic in my situation. I try not to hope.

this is a common theme in the "From" tv series. A group of stranded people get haunted in the night by chronic sick or so.

 

[Florida Guy]

I believe acceptance is important and not just for us with this disease. Many people are unhappy with their lot in life, they may feel they are not beautiful enough, tall enough, have a disability, aren't rich enough or are unhappy with their present circumstances . They may choose to bemoan their luck and be unhappy or they can choose to accept it and work toward improving things without expecting that certain things will change like height or recovery from certain diseases.

How do they feel those condemned to life in prison. They presumably did something very bad whereas we were unlucky but its a similar situation. They could rage, beat fists against the walls, become depressed but it does no good. Those who can accept and do what they can to make themselves more comfortable do much better. And some day they might get a pardon or parole but its very unlikely and they don't worry about it. One day we too might get paroled out of our prison of illness but we don't worry about it we just do the right things and do not expect any miracles. But one day, who knows?

 

[hapl808]

I believe acceptance is important and not just for us with this disease.

I think a big difference is level of ability. If I could talk on the phone for extended periods or have people visit me, then I would be able to accept it with more grace. As it is, being unable to socialize or engage in any activities (cognitive or physical) that I enjoy, it's more about loss of hope than just acceptance.

When I was more moderate (still housebound but able to socialize, cook meals more than sustenance level, etc), I had a better disposition. The transition period from semi-functional to whatever this is - that was tough.

 

[Florida Guy]

@hapl808 There certainly is a big difference among pw/me. Its sort of like we are all in this disease prison but some of us are in solitary which is worse. And some are allowed to go out and socialize or work and the rest are not allowed. The warden of the prison is insane and no one is released but a few sneak out

Going from moderate to severe or v severe has got to be very rough. It seems like many people gradually get worse over the years but some seem to stay around the same level and a very few improve plus 1 in 100 who go to remission and stay there. You are just unlucky that the insane warden put you in a bad part of the prison. It is hard to accept, I can see that but what else can we do except accept what we can't change?

 

[hapl808]

Going from moderate to severe or v severe has got to be very rough. It seems like many people gradually get worse over the years but some seem to stay around the same level and a very few improve plus 1 in 100 who go to remission and stay there. You are just unlucky that the insane warden put you in a bad part of the prison. It is hard to accept, I can see that but what else can we do except accept what we can't change?

Yeah, I accept it now - but it's not living. When I was moderate, I crashed constantly and often was housebound for days or weeks. That is a life filled with adversity, but I could also have friends visit, a housekeeper come occasionally, talk on the phone, listen to music.

More severe - and I can do none of those things. Anything more challenging than mindless scrolling will crash me. Almost everything I enjoyed is gone.

Accepting that means accepting your life is over - which I have.

 

[Insomniac]

Then, you crash and the failure of the treatment becomes undeniable. But you already knew this, at least part of you did. So you beat yourself up over the frustration of wasting time on something you knew wasn’t the solution.

Is this pattern recognizable to you?

I felt like this after spending money on checking cervical instability was causing my ME and then realizing it wasn't.

Not sure if it is connected to acceptance or not. I find it impossible to give up trying stuff forever. Taking very long breaks from it is different to never ever trying.

 

[Florida Guy]

I felt like this after spending money on checking cervical instability was causing my ME and then realizing it wasn't.

Not sure if it is connected to acceptance or not. I find it impossible to give up trying stuff forever. Taking very long breaks from it is different to never ever trying

They say edison tried over 100 materials when he was inventing the light bulb, some say well over 100. They all failed but he kept going and tried more and more things. Finally he tried the right thing, I think it was tungsten, and it worked. He became famous and rich but if he had given up after over 100 failures, he never would have succeeded. I've tried maybe half a dozen things which didn't work but I will keep on. The stories I read here tell me that people who try a lot of things eventually find something that helps at least a little and they may improve.

The cost and difficulty make a difference in what you can try and how often. I believe its important not to expect too much from any treatment since if it doesn't work, which most do not work, then you feel discouraged and you have to get over that before you are up to trying something else. I will keep trying new things expecting nothing and some day maybe it will work.