ME, chronic disease | Young and asleep: – We need to talk about unfulfilled dreams

I think there are a lot of people out there who think you can equate me with fatigue, but you can’t. ME is a neurological disease that affects the muscles and central nervous system after even mild exertion. There’s the physical and cognitive exhaustion, the feeling of having the flu and sometimes severe pain, just to name a few. Then the degree varies, which is often fixed. I sometimes have moderate to severe grades, which means I can’t be with friends, complete my education, or get a job. Doing housework on your own or walking away without a wheelchair.

I didn’t understand until I got sick what it was like to frolic in an oxygen-poor hell, but now I do. I know how painful and difficult it is to live with a disease that goes from being omnivorous to everything. Like a tapeworm that eats its way from leisure activities and education to relationships and routines.

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You can divide the disease into two groups. Visible and invisible. There are advantages and disadvantages to both, but you’re sick anyway. The common is that you need help. One needs to take care of. One needs to be taken seriously.

He should be allowed to grieve the loss of the person you always thought would be there, specifically yourself. And then you should be allowed to talk about grief. People with chronic diseases lose the opportunity to be who they were before.

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More knowledge

I do not open myself to gain sympathy, but to increase knowledge. How important is research, eg. Helps to open up. Don’t sit inside with all the bad stuff. It is useful to talk about it, to put it into words. You are not supposed to do everything alone all the time. We must raise our voices for all patients who are so sick that they cannot be seen on social media, at work, on the street or at school. All those whose lives were completely ruined. All those who can no longer go on, who are no longer here. Everyone who did not get enough time either in treatment or in life. All those who aren’t taken care of, who don’t get help, who aren’t taken seriously.

We need to talk about work that is too much. the social we strive for. Unit. deficiency. Unfulfilled dreams. Feeling disappointed by others. Insomnia. the work. Mortgage. Whatever you had to do. Whatever you are not. The choices you made, the choices you didn’t want to make.

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Perhaps the little things are the important ones that need an outlet. Which becomes heavy when we feel we have to carry it alone, but becomes lighter if we can share it with others. For when together they become the object of reflection on life’s questions, they are too old.