I am going to have to clairify a few things from yesterday I think. Maybe clarify is not the correct word in reality maybe accept would be a better word. After quite a heated "debate" with the well meaning husband who doesn't really have blinders on like I thought, he pointed out all those thing I just wrote about are my issues. No one else's. All mine. 100 %. Making myself bonkers is my special skill and and the sooner I accept this the better off I will be.
Needless to say I was not very pleased with this attack, as I saw it, on my character. As it always does, it took me some time to really think over his words and realize he was not attacking me just telling me some truths that I didn't want to hear, but needed to hear anyhow. The gist was all the pressure I feel is completely self imposed.
He's right. Now what?
Friday, February 28, 2014
Thursday, February 27, 2014
"You look better" compliment or pressure I don't need?
Today I'll be receiving day two of IV Steroids. It's kind of funny how after one day people are telling me "oh you look better" or "you're already walkng better". I know they really mean well, but sometimes I just wish they wouldn't say anything. The issues they can't see are much harder on me than the mobility part sometimes.
I realize we are a visual species. If you can see it you can believe it. When it comes to a disease such as MS, friends, family and even caregivers familiar with the disease seem to need that visual proof I'm getting "better". It's tiring. The slurred, garbled speech is not enough for some people to believe I am really having issues. When my hands are shaking while doing simple tasks it's still not enough to for many. "You're just tired, why don't you take a nap" is often heard in my house from my well meaning, blinders wearing husband. But as soon as the cane comes out well then it's real.
I love my friends and family, but sometimes the comments about "looking" better make me feel worse. It puts an added pressure on me to get moving and back to normal again that sometimes I just can't do as quickly as they or even me would like. I want to drive my Dancing Queen to her lessons instead of having my husband who just worked a 10 hr day have to do it. Swimmer Girl is getting on to her practices just fine, but I just don't like having to ask others do what I am here to do. Ya feel me? I want to go to the grocery store and have food and toilet paper- oh don't even get me started on the toilet paper issue!- in the house. I sometimes can't bounce back as quickly as I used to anymore and I don't know how to tell people this without sounding overly dramatic and "look at me I have MS dammit"
How about the rest of you? Does the comment during a treatment "you look better" make you feel better or does it make have a little guilt for not really feeling better?
I realize we are a visual species. If you can see it you can believe it. When it comes to a disease such as MS, friends, family and even caregivers familiar with the disease seem to need that visual proof I'm getting "better". It's tiring. The slurred, garbled speech is not enough for some people to believe I am really having issues. When my hands are shaking while doing simple tasks it's still not enough to for many. "You're just tired, why don't you take a nap" is often heard in my house from my well meaning, blinders wearing husband. But as soon as the cane comes out well then it's real.
I love my friends and family, but sometimes the comments about "looking" better make me feel worse. It puts an added pressure on me to get moving and back to normal again that sometimes I just can't do as quickly as they or even me would like. I want to drive my Dancing Queen to her lessons instead of having my husband who just worked a 10 hr day have to do it. Swimmer Girl is getting on to her practices just fine, but I just don't like having to ask others do what I am here to do. Ya feel me? I want to go to the grocery store and have food and toilet paper- oh don't even get me started on the toilet paper issue!- in the house. I sometimes can't bounce back as quickly as I used to anymore and I don't know how to tell people this without sounding overly dramatic and "look at me I have MS dammit"
How about the rest of you? Does the comment during a treatment "you look better" make you feel better or does it make have a little guilt for not really feeling better?
Wednesday, February 26, 2014
pissin` in my flowerbeds
Helplessness, guilt, sorrow, rage, despair. Those are just some of the feelings an exacerbation bring out in me. Whether they are a result of some wonky brain wiring or dormant feelings I have squashed down that have come to the surface due to lack of control, I don't know, but they are real and hurt. Right now I am experiencing very noticable symptoms. I can't really walk proper, I have slurred jumbled speech, but the stuff going on inside my head is far more hurtful than any outward displays of this monster.
I want to shut it off. I really do, but once the thoughts creep in, it's like trying to get a stray cat that you fed once to push off. I love cats, but I don't need 'em pissin` all over my flowerbeds and these feelings are definitely pissin` all over my flowerbed.
I try hard to cultivate positivenss in my world these days. I want to look at the beauty in my days and see the magic in everyday life. I'm usually pretty good at it, but sometimes the shit creeps in. When it does I just till it under and let it feed the pretty. When those piss thoughts slip in things it gets harder because they just lay a veil of malodor over everything that lingers.
When a cat pisses in my flowerbeds sometimes it takes a few good hard rains to clear the odor. Maybe that's what tears are for.
I want to shut it off. I really do, but once the thoughts creep in, it's like trying to get a stray cat that you fed once to push off. I love cats, but I don't need 'em pissin` all over my flowerbeds and these feelings are definitely pissin` all over my flowerbed.
I try hard to cultivate positivenss in my world these days. I want to look at the beauty in my days and see the magic in everyday life. I'm usually pretty good at it, but sometimes the shit creeps in. When it does I just till it under and let it feed the pretty. When those piss thoughts slip in things it gets harder because they just lay a veil of malodor over everything that lingers.
When a cat pisses in my flowerbeds sometimes it takes a few good hard rains to clear the odor. Maybe that's what tears are for.
Sunday, February 23, 2014
i despise thieves
Ok friends I have decide if I'm going to make the call. I hate the call. The one to the neuro's office. It always leads to iv steroid treatments and all the b.s. that goes along with them.
This is the part of dealing with m.s. that totally pisses me off. Not only do I have to give up my life to sit in the infusion center for three days, I have to ask someone to drive me and sit with me. My hubby has a busy week at work. My parents shouldn't have to take care of me. Hell I should be taking care of them at this stage of our lives. Then there is the withdrawal week of Hell.
Dance classes, swim practice, grocery shopping, dance comp ( up in freakin Detroit), costume alterations, cooking,cleaning, life.........
M.s. steals my time
M.S. steals my words
M.S. steals my strength
M.S. steals my enthusiasm
I despise thieves. This one is not going to get away with it.
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