A good friend once told me 'Don't let anyone tie your shoelaces who hasn't walked in your shoes'...I've always remembered this and has helped when others have mentioned what they think we should do or not do for my brother Lance...I just say 'thank you for the thoughts, I'll think about that' and then I let it go...didn't at first, but now it's much easier and I think to myself( they have no idea what they're saying)...I even had a good friend say, 'Well, you know, you've given Lance a good life' as if it's over, but I said, 'well, it's not over, till it's over'....praying he has a lot longer! People just don't understand and I've had to accept that and keep my own attitude as good as possible...God bless you all

Most people with MM aren't able to do what they used to do so you are not alone in that. In terms of the criticism you receive you didn't say how close you are to the person wh is judging you but unless they are very close 9living in the same house) I would simply not tell them much about my condition. The ore you talk about what is going on with your MM the more they know. So, stop telling them so much. If they ask how you are doing simply say, "I am still here. Thanks for asking," and change the subject.

Rick - Thanks but definitely not my experience. Due to severe neuropathy, all the various pain meds I had been prescribed over the past 3 years caused significant fatigue and lack of being able to focus on my work - I'm a programmer and electronics engineer. Fatigue and lack of focus is a very common complaint on this Forum and others, due to the MM Meds.

18 months ago, 10mg 3x daily was a major breakthrough to restore my daily functionality. Around 8 months ago, I finally phased out the oxycodone for neuropathy pain, that I had been on for 2-1/2 years - after trying dozens of many other solutions via my Docs/Oncs/GP/PT etc. Support.

After many months, I could tell the oxycodone had cleared my body and that the 30mg Ritalin (10mg 3x) was too much. I've dropped back to 20mg daily (10+5+5) and continue to look for an alternative but so far, this is the best balance that I've made work. I've been taking this slow and easy and I've found a way to be back to normal and better than before. Ritalin also increases a very important hormone - DHEA, that we lose as we age. I'm 71 and had mine tested. I have a very healthy level that does not require supplementation. My research also found that Dexamethasone actually decreases DHEA. When I mentioned this to my Onc, he knew about Dex reducing DHEA but didn't know about Ritalin increasing it.

Maybe this year I'll find a viable replacement but all my Docs & Specialist say at this low dose, no harm for years on end, even my neurologist who's 40+ years and is a highly recommended Specialist where I live in Northern VA.

What you're saying may very well be the case and Everyone's Response to any Medication is their own unique experience but it's definitely Worth a Try - there's no meaningful side effects or withdraw issues. It's significantly safer than many of the MM and Related Meds that we're Prescribed without a second thought.

Since 2021, I spent the first 18 months going through Gabapentin, then Cymbalta, then Lyrica, with Medrol Packs, Acupuncture, The Scrambler, low dose Oxycodone, Xtampza, Morphine Sulfate (terrible allergic reaction after one dose), and a table full of other nasty Meds.

Today, No MM Meds, no Opioids, No Cancer, just a little daily Ritalin and a little retail Tylenol and Ibuprofen. Plenty of Supplements and a very healthy Plant Based Diet, and plenty of Exercise. We all need to find a way to create a better Quality of Life. I've put one together through my own trial-and-error efforts since they (my Docs, etc.) don't have one. They're all very pleased and surprised and provide me with all the Support I ask for. For me, This is a many year Marathon.

Thanks

My counselor would say, "Love them from a distance."

Most people who are healthy have no idea what we go through and they think we should be getting better overnight they don’t realize that multiple myeloma leaves its mark on you especially if you were stage 3 even if your stage was lower it means that mm had plenty of time to wreak havoc on your total bone system cartilage fluids and causes many malfunctions pains weaknesses you never had before. Chemo leaves its damaging effects also.
It’s only prayer right food and supplements exercise if you are able and rest and sleep getting some sun everyday that can heal us back.
If they show no mercy then mercy will not be shown to them at their time of need. Healthy people don’t realize that one day they will be unhealthy and need someone to understand how they feel. Forgive them for they know not what they do.
Stay away from those negative people if you can so you don’t poison yourself. Really we don’t need that at all.
Truth is we are all living and carrying on in a life of pain that they will never know. Shame on them for trying to make you feel guilty when all they need to do is show more compassion!