Do you work / have career?

[CantThink]

@Antares in NYC

I'm so sorry for what you are going through. I went through pretty similar when I was last working full time.

every day has followed the same routine:

• Wake up early, go to the office...
• Work, work, work, then work some more, while hiding my obvious signs of ME/CFS
• Head back home, barely crawling my way up the stairs, crash in the couch, with extreme exhaustion, absolute zero energy.

That's been every day since then. Over the weekends I basically lay in bed on in the couch, with zero energy, recovering from the work week, preparing for the dreaded Monday.

This was my life while working. I found it is not only physically destructive, but mentally also. There is no work, life balance... It is soul destroying.

It's good to have an income, since I was drowning in medical bills, but I actually fear I will collapse one of these days, badly. Like really, really bad, which is starting to scare me,

This is essentially what happened to me.

I've also been dealing with awful and terrifying secondary ME/CFS problems,

While I was working I got more and more other health problems... My body was pretty much screaming stop. I, of course, don't know if I would have developed them anyway, but I added on Trigeminal Neuralgia, Autoimmune Thyroid disease, Endometriosis, and my hair loss suddenly worsened to the wig wearing stage. Ever since then, it is as if I threw my body into a free fall... I'm still in free fall with new problems adding themselves.

By the time I finished, I had worsened the M.E. to housebound/bedbound. I still (6 years later) haven't managed to get above about 30-40%. When I was in my 20s I was able to get back up to about 60% from bedbound after university.

I try not to live life with regrets, but I could have done without all those extra illness things and I feel that had I not pushed myself so hard I'd perhaps not be quite where I am now... E.g. I might have been able to work part time... Which over 6 years would have been financially more useful than 6 years of pretty much nothing except the odd freelance gig.

I noticed someone else mentioned LDN. I read recently how successful LDN can be with Crohn's. Upside: it's cheap and it may help your other symptoms too. It has helped me, although not my GI issues (which are under investigation but likely autonomic dysfunction). Perhaps worth looking into if you are not already taking it.

 

[CantThink]

I feel sad that I will never offer a relevant contribution to society, but after all I think this is a kind of snobbery, and I have to give up what my family wanted me to be and what I thought I wanted to be, in order to be... something completely different.

This makes perfect sense to me. I'm sorry that you find yourself in this position too.