Everybody Lies

If you've ever watched "House" the doctor tv series you know where that title came from. I think he was exactly right. Met with my manager yesterday and talked to her about my symptoms and the problems I'm having with cognition. BIG MISTAKE .... Anyway I ramble on trying to get to the point. I need to go part-time. Well we don't have a part time position open over there. Can I job share? I don't know, they would still have to pay benefits to two different people then. Basically they don't give a rat's ass. They just want me to leave. Two of the laziest able bodied healthy people I work with took it upon themselves to say they are having to work too hard because of me. boo hoo. I know I need to forgive them, but right now I just want to whip both of their asses. The pain of that hurt is almost equal to the pain of losing my ability to be a nurse. Doesn't help anything that I work for the most heartless, don't give a crap hospital in the country. My emotions are a freakin mess. The stress of this is making the ms worse.  Xanax is my best friend. All I want to do is sleep.  Wake up and all this would have been a nightmare. I don't know weather to fight for my job or just give up.  I'm slower and I take longer to do things. But I can do them. I've never felt this betrayed and alone in my life. Curt's only concern is money. Want's me to "help" him by talking to him about it etc. I need a shrink. I'm so damn depressed right now I could scream. If you are reading this just so you know, I don't usually curse this much but the situation warrants it.
Everybody Lies

Tired of being tired

Well, I've had a pretty good week for a fat girl with MS. I think that's about all I can hope for nowadays. Somebody call me a whambulance.  Because right now, I just wanta whine. I cleaned my house today. Well, most of it. Clean 30 minutes, rest. Clean again, rest. Afternoon nap so I can go out and eat with friends. I never knew I missed cleaning my own house. It's the pace that I have to do it with now that drives me nuts. I like to do it all in one afternoon like the good ole days. Nope, all day project. It makes me feel good inside to know I did it and that counts for something. Hope this week is a good one. And that I am able to find a worker for me on May 4th. I am going to the beach with Teresa even if I don't have one. We will have a good time, because she gets me better than most. She won't push me or make me feel guilty about not feeling well enough to do xyz. So, it should be pretty relaxing weekend... Got to gear up for all that's on the calendar in May.  Enough of my ramblings for tonight. : D

Discouraged.

I love my co-workers. They are my best friends. We know everything about each other. Maybe too much, but it works. It helped me keep from losing my mind over the last couple years with this body going out on me and having this damn disease. I realized today that they still don't get it. Can't blame them, I look fine. I try not to complain much but every day I'm there is a challenge. A challenge that I welcome and have chosen to do. I do not want to lose my job. Without it, I think I would just sit in my house, get fat, and become suicidal. : /  I've been off every Wed. for at least a year. It allows me to keep working. I work two days, crash and recover, and then work two more. I was more or less forced to work on my day off. Combination of idiot scheduler, and too many patients. Had a trip planned this weekend. Working four days in a row. Yeah, I'm not going anywhere. Last time I worked three I swore I would never do that to myself again. And here I am.  Pressured into ruining my weekend. Just another price I have to pay for trying to live like I'm fine. Oh well, there are other weekends. The only thing I'm discouraged about is that they don't get it and they won't ever. I guess they think I'm lazy and just don't want to work.. who knows. This too shall pass and I won't ever do this again. (which was what I said last time) LOL I deserve a weekend not feeling like crap. Or at least I think I do.

Rantings

Beef for the day...  I have folks (very well-meaning) ask me several times a day how I'm doing? Am I ok? Are you sure you don't need me to do that. Really?  I have MS, I'm not carrying HIV or have cancer for goodness sakes. Yes, I talked about it WAY too much the first year. Nearly drove myself mad. Now, I try very hard to ignore it. Try to answer inquiries with "yes, I am doing fine" "doing pretty good, and you?" "Having many more good days than bad" Enough already...  I can't explain MS anymore than I can explain quantum physics! I can predict one hour at a time. That's it. Can't tell you what I will or won't do tomorrow, because I have to do what I CAN do each day. The future, and yes even tomorrow, is too far away for the ole MS hag to give me a heads up.  I can feel great one day and like s*** the next day. I would like to not feel judged, belittled, and snubbed during the bad days. . Stop being offended if I say something like "I will if I feel like it",  or "As long as I'm feeling good I will do xyz" I am not wanting sympathy, or understanding. I need you to trust me that the way I have to deal with each day, is ONE DAY AT A Time.  I do not have a lazy bone in my body. If I can't do today what I did yesterday, it doesn't mean I am lazy and just want to dump on my co-workers. Seriously? I'm too old for the junior high crap.  People who really know me, and knew me before I got this damn disease, know that it isn't in my nature to be a slacker. Grow up please, stop being a bitch, and be thankful for your health. You could lose it at any moment and be riding in my boat...

The common cold

I have never been so stinkin ticked off at this MS as I am right now.  I can't have a lousy cold without it putting me to bed. And of course, I have had one right after the other since November.  A couple weeks of feeling pretty good and then a few sniffles, a cough, congestion comes and Wham.  It literally feels like I've had the shit beat out of me.  Balance is screwed up, I can't remember my own name, and my vision gets a little blurry. And that's the short list. Never mind the muscle spasms in my legs and or my butt. All over the common cold. Talk about frustrating! I have never had this many colds in one season in my entire life. It's got to be these stupid injections I give myself every night. I guess it's lowering my ability to fight anything off. I was told this was a different type of DMD and the only thing that would be affected would by the body trying to shred my brain. Somebody lied. I'm convinced.. OK enough about that. Maybe a few more days of rest and I'll be feeling good again. If not, well, I guess I'll be on here ranting and raving again.

More me, less MonSter

It's quickly becoming evident that I can still have good days. As a matter of fact, I can have several good days. The trick is to not abuse my body through those good days. Excepting limitations is kind of like excepting a loss, divorce, death.. You don't want to, but you really have no other choice. If I can make my life better by controlling my thoughts, then that's what I want to do. That's what I HAVE to do! The cog fog is just embarrassing.  Well, that and potentially dangerous. Made my first med error the other day..  Not anything harmful. Gave the patient less drug than I should have and rectified it quickly. But only after somebody had to tell me what I did. That was a very sad moment for me. Just can't dwell on it. The shrink says, smile, relax, go slow. That's the way to keep my mind from escalating into a full-blown worthless state because I can't concentrate or stay on task. I can only do ONE thing at a time. Difficult if almost impossible for a nurse. Thank God I have co-workers that have my back.  Resting is not a luxury anymore. It's an absolute necessity. Just as necessary as taking my medicine. It feels like a waste of time. But I'm quickly learning it's one of the defenses I have in my arsenal of things to do or change in order to make my life, and the life of those around me, more normal. Of course it will  allow me to do more of what I want to do and less about what the MonSter wants.

Facing each day

Well the thing I'm learning the last few days is proving to be valuable.  I have to put some effort into changing the way I think about this monster. They say "You don't get MS, until you get MS" There's so much truth to that.  I've got to stop expecting people to understand what's going on with me every day, every minute and every second of every day. Now, does it matter that they don't understand? Not really... It's human nature I guess to want somebody to walk through this junk with you. The only person who can make this easier on myself is me. Yes, it does feel like yet another task I must complete in order to live a "normal" life. Or at least a life that looks normal, and makes me feel a part of everything instead of a bystander wishing I could do XYZ myself.   Stopping myself from talking about it is a major hurdle for me to leap. I've always aired my whole life to close friends and my husband and daughter.  However, this is different. This leaves people feeling powerless. Because ultimately nobody can do anything about it or "fix" it. Plus, I'm certain it gets on just about everybody's nerves. :D  So far so good. I've tried really hard to keep any thoughts feelings aches or pains etc. to myself the last week or so. Done much better this weekend by giving my poor husband a break from the MS vomit that usually spews out of my mouth. One day at a time. One step at a time. I will take the power from the monster. I will regain of my life.

Day two

Day 2 of meaningless blogging.  Saw my shrink today. He's supposed to give me some tools to help me channel the anger, frustration and self-pity. Trouble is I have to concentrate to control my thoughts. And I'm not to good at concentrating anymore. Herein lies the problem.  Anyway, besides exhaustion and burning behind my knees it's been a pretty good day. I'm learning to just put up with it and stop thinking about "Why Me?", or "I could have done this or that three years ago". " " I hate that person for being able to do what I should be able to do" I don't really mean I hate them. I'm just jealous...  Gotta start working on changing my thought-pattern. Feelings we have no control over. Thoughts we have some control of. Behavior is all we can control. And yes I got all that from the shrink. Hope tomorrow is a good day..

The MonSter

I thought it might be therapeutic to blog about this stupid disease. Multiple Sclerosis sucks. That's about all you can say about it. The many ways it sucks are seemingly endless. Since April 2010 I've know about the beast. For some reason it helps me to personify the old hag. She interferes with every day of my life in one way or another. It's like a bad relative you can't get away from. Or an overbearing boss that looks over your shoulder every few minutes. Carrying a ball and chain around with you like Jacob Marley in the Christmas Carol. Don't ask me where that came from. : )  I just like word pictures.

  Today she is causing my whole body to ache. My guess is it's weather related. Oh, and throw in some burning of my inner thighs down to the sides of both knees. Ice seems to calm that down. There's something cathartic about putting your thoughts on paper. So, this blog will be painfully honest.  The persona about the beast is much different at work. Around my extended family it's yet another. My husband is another and My daughter is yet another. Coming in contact with the public calls for yet another way to handle it. I'm tired just thinking about it. My co-workers want me to shut up about it. LOL They've had to hear me bitch and complain for almost two years. Clearly, they need a break. So in large part I hide how I feel about it, what I think about it, how it's affecting me that day and of course I'm learning more and more to say "I'm doing fine" Helps me feel normal. My extended family I see little of. So I can pretend it's all good around them. My poor dear husband gets MOST of the truth. Some of my thoughts I try and keep to myself. My daughter doesn't need to know all about it. It will only make her feel sorry for me. And scare her. The public has no patience with anybody who's not normal. I get huffing and puffing when I'm slow. I get stares when on a rare scooter ride. My goal this year is to just not give a dang how it affects others. But rather, try and control how it affects me... And build on that. OK, enough rattling for one day..