It's getting harder instead of easier....

I'm Rose. I was diagnosed with M.S. back in 1990, when there weren't a lot of treatment options. My diagnosing neuro had me on a constant low-dose steroid, plus a continuing step-down of oral Pred, time after time, and put me on "total bed rest." He'd get up in my face if I walked from my apartment to the mailbox, maybe 25 feet away. Said he wanted me prone as much as possible, seated quietly at all other times. My bones are brittle, and I have no teeth at all left.
I went to a "Newly Diagnosed Information Group," and for the first time found out this was NOT (as the neurologist had told me) the "standard treatment for M.S." -- most of the other folks there said their neuros put them on a dose of Pred, then one more taper, and if it hadn't helped, it would do more harm than good. Most of them said their neurologists encouraged exercise to tolerance. I called him "Dr. Feelgood," because he sure had a lot of drugs to keep stress down, energy up, and sleep with the 'roids raging round my system. I got the 2nd opinion from a neurologist I've come to call "Dr. Psychobitch." She got me physically addicted to Diazepam, after assuring me there was no way I'd get hooked, under a doctor's care. She didn't like having to *talk* to patients, and she had many, many folks all with the same exact appt. time, so she liked giving out tranq's, to keep us calm. She had me on *80-120 mg per day* of Diazepam. I wasn't getting better. I told her I wanted a second opinion.
She flew into a rage, called the pharmacy, and cancelled the refills on my prescriptions. I had an appt. with a third neurologist, but it was over a month away. Thankfully, he was my 3rd and *current* neuro, and I call him "Dr. Right." 😉 He was aghast that I'd been jonesing cold turkey, said it was possible I'd have had seizures, and what she'd done was considered "medical abandonment." But, since I was already on a start, we went ahead and I jonesed cold turkey off something a neurologist had *gotten* me addicted to, took about 3 months before I even felt human again! 🙁
As time passed, treatments were developed, and I took part in clinical trials. BetaSeron, Avonex, and Rebif -- if anyone ever took one of those and was helped by it, you're welcome. 😀 Other things as well.
Then I went Secondary Progressive, but it wasn't bad for a long time, progression was slow and I had some decent "plateaus." No more remissions was too bad, but no more *relapses* was pure joy. I was very active, eating a better diet than I ever had, walking about 2 miles a day, and doing strength training. Then WHAM! I took a fall, broke some ribs, had a chip knocked out of my orbital socket (this was a fall from standing smack onto the tile floor), and got generally very bruised and battered. My GP's office was under a Ransomeware attack, even their ER was closed, so I talked to a Triage Nurse who said if I didn't lose consciousness and wasn't acting strangely, then I should stay home and ACTUALLY rest: the "exercises" I was prescribed were to spend about 20 minutes of each hour breathing deeply, since shallow breaths were what I was taking to avoid hurting my ribs.
Tysabri came along, and my neuro was enthusiastic, saying even though it wasn't approved for SPMS, it "seemed to" help "some people, somewhat." LOL, M.S. "treatments!" 😁 Then the PML news arose, and a titre test was developed for the...JC Virus, I think is what can cause PML?...and my titre level was too high, it precluded me. It precludes me from most of the newer M.S. treatments and D.M.s Diagnosed in the Dark Ages, I was.
I got semi-used to it; it's no fun at all having to spend money on diapers, but not a single one of the M.S. bladder pills helped, so I'm constantly diapered, but oh well -- embarrassing at first, but nowhere near as embarrassing as having an accident in public would be. My walking has sadly never come back; I can make it up the hill and back to check my mail, and I have a treadmill in the house, and I do yoga 7 days a week, as I'd been doing all along (I used to be a yoga teacher, sad huh?). I have a wheeled walker. My husband has an hour-long commute to and from work, so he's not around during the daytime.
But here's what's killing me: my adult daughter died on Christmas Day, of Vasculitis. An auto-immune disease, as they say M.S. is, and no family history of auto-immune disease until me so I foolishly feel guilty about introducing it to the gene pool.
She left behind my grandkids, and I want SO much to help them in any way I can, and this is one of those times I hate being disabled with a passion. I'm a realist, so I usually roll with it, but I can no longer drive, can't afford to Lyft it out there during the week, and can't just be available within minutes...for anything.
The stress won't go away. I don't think it ever will. I don't see how it can. My husband's taking off work early tomorrow, and we'll visit with them and see what if anything we can do to help. This is SO hard.
Living through things like this is rough for anyone; living through it with M.S. is kicking me in the head and punching me in the gut (so to speak). I'm hanging on by a thread, mainly trying to stay as strong as possible to help my grandbabies and widowed son-in-law. After so long with M.S., I thought I had a pretty good handle on it, even the unpleasant parts, but getting kicked in the head by life (and death, it was not a Merry Christmas) is something I'm still trying to figure out.
Peace to you all.
Rose Fuller