I've posted on the board before, but only once that I remember and I can't find that now. My signifigant other has had Multiple Sclerosis for over ten years, and maybe more. That was just when the diagnosis was, so we're not sure exactly how long. Now, I'm her primary caregiver and it's pretty much a full-time job anymore. She can still bathe (barely) alone, which is good, she can feed the cats and even cook sometimes, but she has chronic back pain from the MS. It's caused by arthritis in the back, and aside from that she has terrible pains in the legs and other spots from time to time. For the last 8 - 9 years, she has been on pain medication, at first mild drugs like Vicodin, then they switched her to Methadone and finally morphine for the last few years. Even the morphine doesn't completely kill the pain, and she takes six per day! Her tolerance has gotten to the point where it's mainly a maintenance thing now. She manages to "maintain" on the dosage given (even though it's not enough), but we feel lucky to be getting at least that, otherwise she would be miserable constantly. She never seems "high" or anything, it's like the drugs just make her able to live a little better quality of life mostly. Insurance pays for that, thank the Lord, else I'd have to go back to work, which would leave her with nobody to help her or watch out for her. The last job I had to quit because she would fall down sometimes and really get hurt, unable to get the muscles to move to even get to the phone! It scared me, so I had to quit and take on the full-time responsibility of caregiver. I do all of the driving, I fix EVERYTHING in the house that needs it, I do the majority of cooking, I clean, after the cats a lot, and just about everything else that needs to be done. At this point I am grateful for the things that she CAN still do, at least for now.
Well, I just wanted to give y'all a good description of what our lives are now, and see if there are any other MS sufferers out there or anyone like me who gives most of their day to an MS patient. It would be good to talk with others in the same or similar situation, as I don't know many people at all anymore. We struggle to get by on her disability, and I should have disability as well but can't afford a doctor to declare me disabled. I screwed my back up about 25 years ago, and it hasn't been right since, even with massive amounts of chiropractic work (very expensive without insurance). I tried going to a clinic but they just kept giving me the runaround for several months and I finally gave up as it was getting clear that this so-called "doctor" wasn't going to do anything for me except "make an appointment next month". Here I am about to die from the back pain, and they don't give me any meds or any treatment and just want me to come back the next month? Of course, at the time I did have insurance, and they were just running up a big whopping bill but never doing anything for me. It sucked!!
Allright, I need to go now, but I'm looking forward to hearing from any others with MS or caregivers of such, and I'll be back to check responses.
Later.
