Spirit in Chains

That's how I feel. Like this spirit in chains. I want to do so much, and I can't.

Two people I follow on Youtube were talking this week about how frustrating this disease is because you push and you push and then you crash and can't do anything. And then you get upset and depressed because you can't do anything. And it's like this circle with no end. The second you feel better, you have to push to do all the things you couldn't do because you crashed. And then you crash again.

I just feel so benched. Like someone has forced me to stop playing the game of life and put me on the bench. And I'm not allowed to get up and do anything.

There are just so many things in life that I want to do. And instead, I'm stuck sick unable to do much of anything at all. And I feel like my body is just not enough to contain my spirit. It's like taking a brilliant white light and shoving it into a tiny dark bottle. It doesn't work.

I feel held back from life, from everything. No escape, just a spirit in chains.


Hi Carrigon, I felt like you describe for so many years. There are a couple of differences now. I am still a spirit in chains, but I am waiting, I am planning, and I have tried to release a tiny spark of light into the world from time to time. It took forever for me to learn to be ok waiting, and a big part of that is that I am not waiting passively, I am trying to reach out and change the world, even if its only one tiny thing at a time. Our power is weak, but only for the most severe is it close to zero. Just by posting a blog you make a difference. If more people would speak out, if enough started speaking out, the change we are waiting for might happen a little faster. We can't change the world in an instant, but millions of tiny changes do add up over time. Bye, Alex
It's just not enough. I want more. Even small things that I need to do at home and can't do. It drives me crazy. I can't stand the feeling of being held back. I want freedom. Release me from the cage, just let me out. I know so many people with this disease who are the same. Each of us has that drive, we have that inner strength and spirit. We're workaholics, we are the strong ones. We're the type A's who don't quit. And we've been benched.

And it's so awful to have people judge us and look at us as lazy when we are the total opposite. We're the ones who don't quit.

I just want the chains off. I want my full potential unleashed.
Hi carrigon, from 1986 to 2002 I was the same as you describe. In the last 9 years I have slowly worked it around. It did not happen overnight. The optimal way out is research good enough to be accepted and curative, so I advocate for research. Until then I have learnt to be more patient, although sometimes when good research is published my impatience resurfaces - I want results NOW. I can't change the laws of physics, but I can change how I react so that my energy (almost a joke) and drive is controlled and directed at finding us all a solution.

It is hard Carrigon, I spent years in despair at not ever seeing a solution, not ever having a life - even if a cure becomes available tomorrow, I have lost decades and I am now too old to do most of the things I wanted to do even if cured.

There is nothing wrong in wanting what you want, I want it myself - but it harms us if it takes away from actually getting it. On the other hand, I think its beneficial to write about it. So many feel the same way, it helps most of us to cope better knowing we are not alone.


God grant me the serenity
To accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference,

"If a man carries his own lantern, he need not fear the darkness" Hassidic saying


If it helps, you are not alone. So many of us feel the same frustrations.
I have no answers but, from my past experience, when I start feeling despair, everything starts deflating downward and then I find myself in a pit that's very hard to climb out of.
Therefore , I know that trying to keep my hope up and thinking positively is crucial to my survival. It's as crucial as drinking water for your physical body.

I really hear you frustrations and I get it.
I wish you inner strength to hold on and not fall in the abyss.


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