Hi everyone,
I need some advice and maybe just to vent. I have had MS for what is probably 20 years, but I was officially Dx in 1998. I was initially doing really pretty well, without meds because my neurologist advised against them. I just was doing so well until a couple of years ago that even neurologists would remark on how well I was doing. Then something happened.
Everyone goes through stress, and maybe that's what did it. At the time, it was some situational stress that I was going through so I figured that things would return to my normal once I resolved those stressors, but it doesn't seem to and now it's been at least two years since I can say I'm doing really well.
I now have balance and walking problems, often tripping on nothing and my doctor gave me a handicapped placard to use that I am too proud to use, not even once so far. My left side is more effected, so sometimes my left leg just gives way and I fall. Thankfully I've only fallen once when my kids were present, and never around my man. I am a proud person, and I think for a long time that I just willed myself well, but as the progression of the disease continues, I can feel my body trying to be better but it doesn't seem to be able to just be willed into submission lol.
I also now have problems with what my bf calls "moodiness" and what I call crazy behavior. Sometimes I just get incredibly overwhelmed by stimuli (the TV on with the kids running around laughing and having a good time, the music playing loudly or everyone at home trying to ask my a question or get my attention all at the same time. For about a year or so, I really thought that it was just "stress", but I think this is something more. I am actively what I call "on the grid"...the endless appointments and tests wanted by the doctor, and looking to get back on to some DMT (the new oral medication) but I am fearful that I will be cognitively this way forever now. My family can barely stand me being around them sometimes and to make it worse, I have a 13 year old daughter that is hormonal and moody as well! I have tried letting them know that I am having a hard time, and everyone in the house knows about the MS...but why can't I get it together? I don't want to act this way or say some of the things I do. Sometimes I think my kids would be happier or better off without me (as in going to live with their father, my ex-husband) but I dread that too as he isn't the best role model for them.
Has anyone else found a good way to handle continuing progression of MS all while having a stubborn, too proud demeanor? I hate asking for help...I always think I can do it alone and hold it together, but I am obviously fraying at the seams...someone please give me some advice!
I need some advice and maybe just to vent. I have had MS for what is probably 20 years, but I was officially Dx in 1998. I was initially doing really pretty well, without meds because my neurologist advised against them. I just was doing so well until a couple of years ago that even neurologists would remark on how well I was doing. Then something happened.
Everyone goes through stress, and maybe that's what did it. At the time, it was some situational stress that I was going through so I figured that things would return to my normal once I resolved those stressors, but it doesn't seem to and now it's been at least two years since I can say I'm doing really well.
I now have balance and walking problems, often tripping on nothing and my doctor gave me a handicapped placard to use that I am too proud to use, not even once so far. My left side is more effected, so sometimes my left leg just gives way and I fall. Thankfully I've only fallen once when my kids were present, and never around my man. I am a proud person, and I think for a long time that I just willed myself well, but as the progression of the disease continues, I can feel my body trying to be better but it doesn't seem to be able to just be willed into submission lol.
I also now have problems with what my bf calls "moodiness" and what I call crazy behavior. Sometimes I just get incredibly overwhelmed by stimuli (the TV on with the kids running around laughing and having a good time, the music playing loudly or everyone at home trying to ask my a question or get my attention all at the same time. For about a year or so, I really thought that it was just "stress", but I think this is something more. I am actively what I call "on the grid"...the endless appointments and tests wanted by the doctor, and looking to get back on to some DMT (the new oral medication) but I am fearful that I will be cognitively this way forever now. My family can barely stand me being around them sometimes and to make it worse, I have a 13 year old daughter that is hormonal and moody as well! I have tried letting them know that I am having a hard time, and everyone in the house knows about the MS...but why can't I get it together? I don't want to act this way or say some of the things I do. Sometimes I think my kids would be happier or better off without me (as in going to live with their father, my ex-husband) but I dread that too as he isn't the best role model for them.
Has anyone else found a good way to handle continuing progression of MS all while having a stubborn, too proud demeanor? I hate asking for help...I always think I can do it alone and hold it together, but I am obviously fraying at the seams...someone please give me some advice!
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