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Magnate
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Join Date: Nov 2008
Location: Fredericksburg, VA
Posts: 2,091
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Magnate
Join Date: Nov 2008
Location: Fredericksburg, VA
Posts: 2,091
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I am so sorry life is sucking right now. As much as I would love to say "hang in there" I know your frustrations. As far as hubby goes, well he is human. He is probably just as scared as you are, and just as frustrated. Whether he makes it through this storm or not is something only time will tell. I was one of the fortunate ones who went in for one thing and was dx within 2 weeks. And I am honestly still amazed that DH2B has stuck around for it all. We had only been together for a little over a year when the dx hit, along with all kinds of other smacks in the face that life decided to throw at us.
I am not working, have not been since jan 09. And he is still here, and he is the one paying all of the bills, and I know it gets to him sometimes. He gets frustrated and he gets annoyed. But, he also sees what my body is doing to me and he tries not to be a jerk (though he has his days). But I have my days too. It's emotionally draining when your body doesn't want to work, especially when you find you are unable to do anything. Some days I feel like I have lost myself in the last 2 years, all of the things that once defined who I was have all but vanished.
Lynn had a very good point... Perceptions of normal change over time.For me, normal was getting up at 5am, dropping DD off, heading to work, not getting home until after 6pm, cooking, cleaning and doing it all over again the next day. Weekends were devoted to entertaining friends and family and obsessively cleaning. Now, a normal day, or a good day is having the energy to go grocery shopping and i have to plan my entire day around this. It sucks, but it's about trying to adapt. Changing isn't easy. Me, the OCD Cleaning lady... you would be shocked to see my house most days and I am here all day! But I have learned to enjoy other things in life a lot more; spending time with DD, the ocean, hanging out with my mom.
As you may have already found, it's times like these when you learn who your real friends are. And that can be very sad and very lonely. I had all kinds of friends before MS. Now I can count my true friends on one hand. I can say that my few friends are more of a family than my real family. And although she pesters me to death, i have a great mom who is there for me all of the time.
I do question why there were only 2 MRIs done in the last 3 years. I have an awesome neuro who likes to "see" what is going on. I went in for #22 yesterday and have #23 and #24 scheduled for tomorrow. Mine may be different because she is suspecting PPMS, and we keep changing meds in hopes of finding something that will slow it down. Plus I have the broken bones thing, and the other stuff going on in my spine that needs to be looked at. but still. Even if it is not MS, there is obviously something going on... start hounding your doctors. If they can't get you answers, ask for referrals to people who can. Don't sacrifice yourself because you don't want to hurt their feelings. It is not worth it.
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. I am not spoiled!
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