My cog fog and crazy are taking their toll

[zenlightenment]

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!

[jojo18]

i was dxd at 13. that was 9 years ago. and I was stubborn then, and in the 5 years or so following, i grew more stubborn.

when i was 14, i though asking for help was a sign of weakness. its not. saying "I know i can't do this on my own, will you help" is a sign of strength.

If you want to get better and are afraid of the medications, but are more afraid this is the "new normal", you need to change something. taking medications is NOT a sign of weakness. quitting is. not changing is.

I have been on 8 different medications, one which almost killed me (anaphylatic shock), but im still here.

yes, i am tired alot. it comes from the fatigue and insomnia. and i have cog-fog. but, if today I fail, i will try again tomorrow

[a_p_s_p_p]

I understand

Zenlightenment, first of all I would like to thank you for sharing!!

My husband has the MS and for many years he was "fine" but in the last few years things starting going haywire. We thought the stressors in his life (work) were the cause of it, and maybe they were the beginning. It is hard to tell which came first, the stress at work causing the MS issue or the MS causing stress at work. Either way he tried switching jobs but that didn't work out well either. He has been out of work for over a year and now the financial strain causes the stress now.

His Cog Fog seems to be worse than ever. He was deeply depressed because like you he is a proud go getter. He supported the family for many years and now he cannot. I think it is very difficult for a man not to be able to support his family. That causes depression. We have good days and we have bad days. One thing I have learned, and only recently thanks to these message boards, is that he really doesn't mean most of the bad things he says. Once I realized that things have been easier to swallow.

I love my husband as do my kids and we will take 100 bad days for that one day that he is himself. Don't be so hard on yourself. Your daughter will come around, might take time but she will. Just make sure she has someone to talk to. I highly recommend you get her into therapy now. My 17 year old refuses to go, but I think it would be so beneficial for her. It wouldn't hurt for you to go talk with someone too.

Coming from someone who doesn't have MS but lives with someone who does, please ask for help when you need it. We want to help!! We just don't know what to do at times and need you to guide us. I don't baby my husband because I know how badly that will make him feel, I do however respect him for telling me what he needs.

I wish you luck!!!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **