Okay, I did a bad thing. I started to read The Breakdown Lane and man, I'm realizing that I have yet to really deal with having MS.
I think that for the past, almost three years, I just tried to avoid the subject. Just thinking about it when having major symptoms, having Solumedrol treatments or now every night I take a shot.
I think about it when I plan and organize my team for the MS Walk, but really, if I have a symptom I don't talk about it. I'm starting to feel that that's been my biggest mistake.
I also realized today that I haven't been telling my husband. He didn't hear until today how incredibly depressed I've been. I think he's just been feeling my anger. Poor man!
Is anyone else angry? Stupid question?
Regarding that book, I can't get past the first chapter. I'm afraid to keep reading. I started it and thought I should go back and finish 1776. Or I should write everything down myself.
In reading in other blogs I'm also realizing a lot of us either blame MS for all symptoms we have for anything or try to attribute some of our symptoms to something else.
Do you realize that we get that from our family and friends. Everyone tries to reason away these crazy symptoms! Specially for those of us with invisible symptoms. Just because someone else can't see my cold spot in the middle of my thigh, doesn't mean I don't feel it.
And I really think people are bothered if I talk about it, like I'm drawing attention to it. So I try not to talk about it. But you know what? It's part of me! I can't reason it away or pretend I'm not having a hard time with it or act like I'm fine. But I'm not fine. I have these weird crazy things going on in my body. Yes, I can walk just fine, and I'm grateful for that. But I still have crazy wacko things happen that I can't explain. The things that make me think, oh I'm just tired or I picked up my son wrong, or I must have slept on my arm and that's why I wake up every day with it numb.
But it's because I have MS. Now, I got that. I just hate having to pretend that I don't. And even telling myself that I'll deal with it, when it comes up.
Well, it comes up every night at shot time. It comes up lately, every day, throughout the day because of this depression.
I hate living every day wondering when I'll have another major relapse. And not really knowing if I'm having a relapse because of all the other weird twinges and cold spots and numb spots.
I cannot wait to see that new neuro in November.
But in the mean time, I'm finally mad. I keep thinking, that I don't have to make this part of my life. But it is.
I got something from my old company about retirement. My Dad and I sat down to see how much money I could get if I made them role it over in a monthly payment for me. But my Dad asked, "When are you planning on retiring? Can you wait till you're 70." And I said, "Dad, I don't even know if I'll be able to walk at 50, so I don't know." I don't know. That is the hardest part. I wish that someone could say, "okay, this is how long until you'll need assistance." But no one can say.
I know, I'm having a terrible pitty party. I know this blog does no one any good. Maybe that's why I feel so selfish. I don't want it to be all about me, and it truly isn't. My MS is about me and my family and my friends, at the least the ones who aren't bothered if I talk about it. Bitter much?
I'm very lucky to have such a wonderful husband. My parents are wonderful. But just like when I first found out. I had to make them know that I was okay. Well now I think I need to talk. And be sad when I'm sad, and be okay with that. And not feel guilty about letting this bother me.
If someone was stepping on my foot or sticking a needle in my thigh to make me have these feelings, my family and friends would be mad. They would talk about it. They'd say, "Hey, why is that jerk sticking a needle in your thigh?" And I'm sure they'd tell him to stop.
But this is harder for them to talk about, and thus harder for me to talk about with them. It's just harder when you can't see the jerk, I guess.
Please don't get my wrong. I have MS and in not wanting it to be the main thing in my life, I've avoided it. But it's part of me and I have it and I've got to talk about it. UGH!!
3 comments:
Pam,
Never lose sight of yourself, which I think is where you are coming from now. It is ok to be angry - be angry. We have all been angry. It's good to talk - at least try. Your blog is to help you. Go back and reread it to yourself and you'll be able to see the things you couldn't when you where really sad or angry. As far as bloggers with MS blaming all their symptoms on MS, I don't know if that is entirely true. We use our blog to find solace in the things we experience, not to place undue blame. I hope you feel better soon. I'm sure you are too beautiful to be upset. ;o)
Pam ... the whole 'Blame MS Game' is a tough one to crack. Since you really dont know when/where/what your next attack is going to be, it's easy to shrug your shoulders and chalk it up. Little things like fatigue are sometimes only a perepherial (sp) effect though. Other rational cause-effect (no exercise, poor sleep, bad diet) could have more to do with it than the MS ... but via a chain of reasoning, MS will get the blame. I am certainly guilty of that on many occasions.
Pam - frustrating as hell isn't it? We can't battle this disease and retain any kind of sanity. I think we all have moments where we get angry and righteous anger is okay! When I was diagnosed in 2002, I had a brutal screaming match with God. When it first drops, you are not left with much else to do, because we know so little. As we live and learn, meet others, research, surrounded by the love of family and friends we begin to see this can be done. Stay strong Pam, piece by piece this disease is going down!
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