I'm not sure I could weigh which MS Symptoms are harder to deal with. The cognitive or physical. I dislike both. The difference is most people can't tell I am having cognitive issues like I can. They may be able to see on my face that I am having difficulty connecting the dots or words. There are many times where jokes click for me just a little later than others. But, they can't see when too much outside stimulation tires me and makes me stressed. When just too much is going on around me and I just feel like I need quiet time. No TV, No Computer, No Kids, No Phone Calls, No Dog, No Music...just peace and quiet. I am concerned about an upcoming visit to my sisters house for Thanksgiving. She has 3 boys ages, 1,3 and 4 years old. Their household is loud and constantly active. I'm not sure I will be able to take 5 days of it there while having to deal with my dog and her dog getting along. I am exhausted just thinking about it. And sometimes I think my fiance forgets how these things add to my mental exhaustion and therefore fatigue me.
Sometimes I just can't deal with things. Bills to pay, dog to care for, home to take care of, crap to deal with. I've dealt with this stuff my whole life, I need someone else to deal for me now. Unfortunately, my future husband does not deal with these chore type of things well. I just get so overwhelmed with this stuff sometimes that I could spend all day in bed (I have about 2 of these days a month when that's what I do), thinking my dreams are better than my reality. Some days, MS wins. Plain and simple. And it's winning more and more these days. I'm frustrated, tired and not sure what decisions to do or make next. Making decisions is especially hard for me, I am always asking my friends opinions on things. Not sure why, I question myself much more since the onset of this disease.
My grammar, spelling, typing has also been affected. I sometimes reread things 3 or 4 times to check it after typing it. Some times I run words together or they are correct in my brain but not when they are typed out or written on paper. The scary part is after only 5.5 years since diagnosis I feel like I am having many problems already. And now after typing this I am exhausted again and my brain needs a rest...off to bed. Thanks for listening/reading...
9 comments:
Boy, MS sure does tucker us out!
Hang in there, sooner or later things will get better. But you better tune up future hubby now so that things that are expect of him do not come as a big shock.
He is going to HAVE to do SOME things FOR you and you are going to have to let him. Let him do things HIS way, but tell him how you would like things done. This way he knows the expectation and when he has already done the task, he will know if right or wrong.
The fatigue is a killer, I agree. I'm jealous that you ONLY have two days a month in bed....I have that many per week!
Regarding being a guest in someone else's home for a few hours up to a few days, same speech- different house. You must take the time to rest, get away from the crowd for an hour or so. Ask for a lie down place and if none is available, commandeer one of the bathrooms and just SIT.
I'm concerned that your fiance does not know which way is up re: chores, bill paying, etc. At some point, you are going to have to lay it all out - you know that. My hubby still won't write out a check to pay a bill, but will go to the bank and get a money order for something when I am not able to write or type. I usually do all bill paying on line - I can't tell you the last time I wrote out a check.
But it was important to me that hubby know of an alternative way to pay a bill in the event that I can no longer do so.
Another thing about hubbies and their "chores" - sometimes "I" am the chore. Sometimes I need my chicken cut up and sometimes I need help getting dressed. Sometimes my voice escapes from me and he has to interpret for me to others. And he knows it is all part of "us" - and I love that he takes it all in stride and does not grumble.
I had the "talk" before we got married (we lived together for a year and I was "sick" but undiagnosed) and I laid it all out there. I told him I was sick and it wasn't good. No one could be that sick and come out not having one of the biggie diseases! And he said it would be okay because we love each other.
It's been 32 years now and it is still okay and we still love each other.
OK,,,,,easing down off the soapbox.
My grandmother used to say, "Every woman needs a good wife" (no, she was not gay)...sounds like you could (at the very minimum) use a good secretary, chore worker, massage therapist, and (since I'm feeling extravagant*sp*?) personal proof reader!
Oh, to have a fully functioning brain again...sigh. I hear ya.
Linda D. in Seattle
You just type what/how much/whenever you choose; we with MS understand. Blogging is a real challenge. I'm surprised people read what I write and excuse my spelling and grammar gaffes. You are family now, nobody cares or sweats the small stuff.
I'll be back shortly to read and comment, Lanette. I've been diddling far too long on my computer this morning and I'm now guilted into showering and doing some non-computer stuff for a bit. I'll be back soon when I physically crash in a couple of hours (seems like a lot of people are crashing on couches lately...)
Jen
Hi Lanette--
You actually sound like so many other MSers, including myself. I get overstimulated by too much noise, chaos, and too many decisions. At night when I'm tired, I sometimes can't finish a sentence because I can't think of the next right word (very frustrating.)
Sounds like a lot of people are taking to their couches lately. Today it took me until 4:30 PM to shower, since I don't have any outside plans until 6:30 tonight.
Don't sweat it too much, and know that my husband, too, is pretty inept at housekeeping, but I've given up riding him about it because he's great in other areas, such as helping me with shots.
As his majesty Ozzy Osbourne says, "Goin' off the rails on a crazy train...."
Hang in there..
oh babe, i'm so sorry. i had no idea what you have to deal with. i don't know much about the disease, but what i do know is mostly all about the physical. i didn't realize there's so much more. you do what you need to do to feel better. if that's taking a day or two to rest in bed then that's what you have to do. take care of yourself first. i'll be thinking of you. hang in there. xoxo.
Wow Lanette .It's almost like you're describing me.
I find the cognitive and fatigue stuff much harder to deal with than physical symptoms . I'm truthful when I say I would gladly take on more pain so I could be less of a space cadet.
Perhaps you might tell your sister that you will need to have a quiet spot to rest during the holiday. (Yeah I know ,easier said than done) I find I avoid gatherings because I can't handle it . I have a hard time though trying to explain it to family and friends.
Take care of yourself
Bye
Carole
Oh yeah I forgot to mention not being able to make decisions easily is an MS symptom, but I guess that doesn't make you feel better. (I'm trying to help )
Hi Lanette--
I sent a couple of comments in the last week or so, but I'm not sure if they went through. My site has changed to www.msstrength.com, due to a copyright infringement with MSFriends.org. Anyway, I understand the fatigue and cognition stuff-- ROTTEN. Hang in there and know that everybody empathizes with what's going on with you. You're a warrior!
Jen
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