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New here. May I rant?

Tue, September 26, 2023 4:51 PM

I'm 60, have Crohn's and a type of incurable leukemia (hence my ironic username) self employed and miserable.

I'm so tired of people inviting me to lunch or an afterhours happy hour. I'm too exhausted for that and I can barely eat.

these people are always folks that get regular paychecks and are healthy. Most know about my challenges but they forget. I understand it's not their fault.

but it's so frustrating. My time is spent trying to make a living (failing at that) at the cancer center or in various doctors offices and hospitals. Or working or sleeping.

Zoom has been a godsend but so often I request it and people just don't honor my request.

it doesn't help that I also have a public life as a musician (sort of successful - I've performed with eleven Grammy winners) so people see the shows or press and I look normal. They have no idea how much work it took for me to look normal.

what do you do when people invite you to do stuff that just isn't possible? I don't feel like explaining this shit.

my IBS is small bowel. Lots of surgeries, malnutrition and extreme fatigue. Getting depressed. I have to quit performing after 44 years.

this disease has robbed me of everything. I can't even find a support group and my shit ass insurance doesn't cover therapy. I don't even know how I would fit it in anyway

sorry for my first post being a complaint rant. But I'm really wondering how to gracefully handle these situations and I have nobody to talk to.

TIA

Lottowinner
Joined Sep 26, 2023

Mon, November 13, 2023 2:38 AM

Reply posted for allriptide.

It's full of useful meaning!

allriptide
Joined Nov 13, 2023

Tue, November 07, 2023 8:20 PM

Reply posted for Lottowinner.

I tried self-employment part-time after my full-time job. I just wanted to see if I could maybe pull it off. I did well for a while until I got a flare-up. I had to start rejecting clients and I know I'll have trouble finding new ones being in pain and feeling fatigued all the time.

So I'm stuck at my full-time job for now which is unfortunatly in-person. The return to office/school really pushed the Crohn's & Colitis community back a few steps. I'm 32 now and may have to switch to a career-adjacent field to be able to work remotely again. I've found working for governement to not be stressful and I like the predictable hours and ability to take off when sick, even somewhat long-term. However, the cramps and need to throw up in the office just isn't working out for me anymore and remote work may be more helpful than the government schedule for me at this point.

I'll add that I did cut meat out of my diet in 2016, and my flares have been far less debilitating and shorter lasting. It also eliminated the 24/7 feeling of severe nausea. Keeping on an eating schedule also helped me, but I am often too distracted to keep on a schedule.

anthonyg
Joined Nov 7, 2023

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