I think all of us have had that... ugh.. feeling. And as you say it’s not depression, not feeling lost and alone, but more the desire that the folks around you never heard of MS and the internet 😑. Even my own mother whom I adore and have a great relationship with can get under my skin a lot of times when she starts in on her personal endeavor to cure MS with me front and center as her guinea pig... maybe I should try giving up gluten, sugar, caffeine, fat, red meat, potatoes (after all they’re a member of the nightshade family), salt, pepper, garlic... or maybe I should eat more red meat, more bread, more sugar, have I tried taking vitamin A, B, C.... has my doctor checked my zinc levels, and did I discuss with my doctor every topic under the sun with a minute by minute account of my entire life starting with “I was 133rd egg released from my mother’s ovaries and joined with the 12th sperm my father created on the night of my conception...”

I mean seriously, I get that it’s hard for her and she probably blames herself some, but it’s not exactly fun and games for me either. And it’s a bit harder to have the acceptance of the nature of the disease when folks keep telling you about trying this that or the other, like it will be some magic bullet because there was a completely unproven and more times than not unduplicable theory or article where this one time it worked for someone... maybe...

And it makes my mother come off as somewhat like a rabid dog with a bone, but in every other medical instance she is the living embodiment of a logical, rational and reasonable human being who can tell others in detail about their health concerns and when perhaps it better to simply accept what fate has dealt you or fight it for all you’re worth with proven treatments and therapies...

So I kind of have to listen to her off the wall advice with a grain of salt for the absolute love she has for me that she will search to the ends of the earth and nothing at all sounds too crazy if it means it’ll help with my suffering. But after spending a year of going over why many of her crazy ideas were not founded in science... I’ve taken to simply telling her... “yeah! I’ll give it a try and see...” and then simply carry on as usual . Which I really despise as prior to this disease I have never before in my life lied to my mother, my father frequently, but not my mother, I made it through my childhood with the truth disguised as sarcasm and omittence.

And now I’m a liar 🤥. Even to the point of occasionally lying about being busy so I can take a break from her latest “cure”. I love her... but I think I would love her even more if she lost access to the internet, library and running into anyone who has MS themselves or knows someone who did who tried xyz and now you would never even know.

And when that’s not driving me crazy enough there the chronic “are you ok?” From everyone around me if I give the slightest grimace of pain, or a bit more of a huff when standing or sitting, if I sit quietly for more than 30 seconds. And then when I respond yeah, fine... I get “no really, what’s wrong”... “bleepin’ MS ” is what I truly want to respond with and admittedly i have on a few occasions. I mean it’s been years upon years for some of these people, and witnessed many times throughout the day, just accept it already that if something is “wrong!” aside from the usual I’ll let you know otherwise, guess what, the only thing wrong with me is MS.

But I have discovered a little prayer that gets me through most days.... “Dear God save me from your Good Samaritans, and if I cannot be saved from them, please Dear God save them from me! Amen” I figure God will forgive me for the humor since he clearly has a great sense of one to come up with this disease.