Always run down with MGUS

That’s really lovely of you Patty ❤️🙂
Here, the staff - especially in emergency departments - have very little sense of urgency or patients as the priority, they spend much time socialising, on their phones, snacking on sandwiches and food that is supposed to be for patients who haven’t eaten for hours (sometimes you lay there for a whole day with no actual investigation..they’re wearing you down till you leave and go to another facility) and spend a lot of time telling you your delusional and symptoms you’re reporting aren’t there - being a squeaky wheel (especially in ER) has had me talking down the security staff and big male nurses wielding needles filled with sedatives who are threatening to put me in an involuntary psych hold for continuing to insist I have something wrong when I don’t (even though they never investigated symptoms). That was when I had a bad fall and damaged my knee replacement - I’m still awaiting surgery (I fell in January) for the repair - can’t weight bear on my leg for all these months (and it’s hurting). I escaped that hospital when I told them I needed a wheelchair to go toilet - I rolled outside with the sheet wrapped around my head and shoulders like a scarf, down the street, got a cab home, and after a couple of weeks I managed to get to a private surgeon who said it should’ve been operated on immediately. So, asking for a social worker in that instance was laughed at, because once they have it in for you, they do what they can to harm you. It’s very dangerous taking chances in some public hospitals here. Other times I’ve been withheld pain meds after orthopaedic surgery by nurses in the middle of the night, until I’m screaming in pain, then held down and strapped to the bed because the same nurse said I refused to take medication which resulted in a psychotic break (totally untrue). Again, in the public system. That same nurse refused to help me with a kinked catheter and I ended up laying in a puddle around my stitches for god only knows how many hours during the night. This was all at a major teaching hospital. There are major power imbalances here; major threatening behaviours from staff who are aggressive when patients don’t conform to what they want.. there are signs everywhere that threaten patients with non compliance they will be removed/denied treatment/charged. The staff take these policies to the nth degree - patients are clearly afraid a lot of the time. So I think there’s little concern from these institutions regarding actual patient welfare - hence why we never get to see a social worker. I’ve been thinking to reach out to former patients and catalogue experiences…at the moment, there’s an actual governmental enquiry into the traumatic experiences had by people in health services…that’s how bad it is.
Submissions are being taken, and passed on to the inquiry; stories from people, and the families of those who didn’t make it (those who had families).
I’ve written a submission, and have offered to appear anonymously in front of the inquiry panel (I’m afraid of bias against me if I identify myself and need to go back to a public hospital), but I want the govt to know what a festering pool of corruption that is what is called the health system.
We do our best to laugh it off, sure; but beneath the not quite comfortable grin is fear and trauma, unfortunately.
My degree is occupational therapy, and I always tried to do my best in a corrupt system - seeing many things that made me not able to sleep at night in the short time I was exposed to the system and the staff as a worker (I just never went back). I wish squeaking was a safe endeavour, and I appreciate the prima facie approach but it’s not safe to assume that that kind of approach will work amongst such corruption and dare I say abusive institutional environments. However, I do squeak from a distance, as a systemic advocate, from the safety of behind my computer screen 🙂🙌🏻

Hello @dazlin. I'd like to invite @gingerw, @gmajudy, @stuckonu, @susangs, and @canderson12 (from this conversation, https://connect.mayoclinic.org/discussion/mgus-2d464e/) to this conversation to talk specifically about their experience, if they have any, with feeling fatigued with their diagnosis of MGUS. While it is good that you are still in a status that does not need treatment, it certainly sounds frustrating that you are experiencing increased levels of fatigue that are preventing you from doing things you enjoy. When you are feeling run down, does taking a day to recoup typically help, or does it just get you back to a still fatigued state? Any activity in particular drain you, or is it just being active in general?

I am chronically fatigued to the point where I cannot function. My vision has been affected, I get wiped out from even a gentle yoga class; my muscles and bones hurt and I’m even more exhausted. I often feel out of breath. I am now very depressed because I was a health and fitness trainer and I can’t do the things I enjoy! Are there any drugs to help with my energy level? This is not living!