Stay away as long as you can you ole hag. Stay away!!!
Friday, September 20, 2013
This is the good times
I fear there will be horrible days ahead of me with this horrible disease. So I must make the best of the good ones that I have now. I don't want to waste the fact that I can walk and move and go and sing and dance and be a nurse! There will come a day, when I cannot. I'm very thankful the MonSter hasn't taken more things away from me up to this point.
Monday, June 24, 2013
Too much on the plate
Like sweet Georgia Brown.. "ain't nobody got time for that". That's exactly how I feel about this past week. Been such a struggle, between the uti, the re-flare up of my tendonitis in my arm, stress of the hubby's job and living in a dirty house, while trying to work! Even though it's 3 days a week. I feel like hammered shit. Plain and simple. Could sleep 20 hours a day and the muscle spasms are brutal. Oh, and need I even mention this ridiculously HOT weather. The stinking humidity is killing me. I just want to run and hide somewhere. I wish I could get out of this body and do what I want to do so badly!!!! I am trapped in it and it's ruining my life. There I said. it. Whah Whah Whah. Somebody call me a whambulance. Lord help me is all I can say.
Saturday, June 8, 2013
I'm not really "fine"
I am coping with the MonSter pretty well. I've learned how to manipulate the ole hag (my ms nickname) so she has less control over my psyche. But alas, physically she still drives the bus and I hate to even say this out loud, but I'm at her mercy most of the time.
Here's the things I wish people knew and understood about me and the ole hag. I'm writing this to hopefully cut down on the stress caused by not being understood. I don't blame anybody for not understanding. This disease is invisible and confusing and there is no way to really get it, unless you get it. I don't care what people think of me on the little stuff in life. I'm old enough to know better! But when it comes to the content of my character I care a great deal what others think. Thus, the reason for this list. I just want to be understood. Every body I've met or talked to who has this ole hag struggles with this desire to be understood. Not pitied, just
understood.
1. I'm not fine, I'm dealing with it. I say I'm fine, because that's what 99% of people want to hear. It would be time consuming if I were honest and said, "well, today is sucking less than yesterday because I got 12 hours of sleep and have taken a handful of pills to ease the symptoms enough to appear fine" Saying I am fine is working for me. I like it, even though it's a little white lie. : )
2. I don't look sick, but I am. Like it or not, there is no escaping my body. My body is infected with this hag and she reminds me of it every minute of every day. Again, I've learned to hide the fact that I'm sick, by coping and handling it without involving others. That and the drugs I wish I didn't have to take.
3. I get about 7 cups of energy per week. One for each day and that cup isn't enough. So I borrow from the next days cup, knowing I will need to replenish the cup by resting. That entails sleeping and laying around much more than I would like. If I use only 1/4 of my cup by sleeping most the day, I might have enough left on the next days cup to do something I'd like to do. Rather than just doing what I must do. Like working, cleaning, laundry, or shopping. Right now most of my cups are spent Monday, Wednesday and Friday. Because those are the days I work. I'm SO GRATEFUL to have a job that allows me to continue to do what I love, which is nursing. The downside is my other four days don't have full cups in them so I pick and choose what's worth recovering from.
4. I'm not lazy. I've never liked lazy people. It's a pet peeve of mine. I enjoyed outworking and outdoing others in my former life. The one before the hag moved in. If I appear lazy, just deal with it anyway you can. But leave me out of it. It makes me very angry and it hurts my feelings if you convey those negative feelings towards me.
5. I'm not depressed. The symptoms of depression mimic the life of anyone dealing with the hag. Tiredness, isolation, inability to enjoy anything, sleeping a lot, all symptoms of depression.
All Ms'ers are tired. They don't go out or get together with people much because it uses some of the cup that is reserved for necessities. If it seems we don't enjoy something, it's probably because we're wiped out or hurting. Usually both. Sleeping is the only way to refill the cup. So, it's a necessary evil. I take medicine for depression because I need it. Anybody who says they could deal with this crap without having a little help from meds, is either ignorant or lying. MS itself causes changes in the brain that actually CAUSE depression. Just like it causes muscle spasms or any of the other million things that could go wrong.
6. Every day is a brand new day. I have no idea what I will feel like tomorrow. Never mind, a week from now! Planning anything stresses me out because I know in the back of my mind I might not be able to go or do the planned event. It will depend on the hag and the cups or lack thereof of energy. Also, if I make a plan, I tend to push myself to hold up my end of the bargain since it was a planned event that I committed to doing. And pushing myself not only uses up twice as many ounces in a cup, I pay for every push. Pain, spasms, cognitive fog, exhaustion that is beyond anything I ever experienced in my pre-ms days. Pushing oneself when you have MS is like smoking a pack of cigarettes to ease your lung cancer. It doesn't work. Matter of fact, it makes it worse.
7. I'm not a druggy, who likes taking pills. The pills I take keep me moving. They are what saves me from a life of being miserable. I take 2 kinds of muscle relaxers, 3 times a day and 4 times a day. I take Tramadol, a mild narcotic like drug for pain. Something hurts every single day without exception. I take a pill that gives me a temporary extra 1/2 a cup so I can perform better and do more. Please don't judge me for that. As a nurse who works in a pain clinic, I've seen what being addicted to narcotics can take from a life. I have no intention of going there. However, I have much more compassion for those that have real reasons to take them. Further down the road if I need to take strong narcotics to have a life, I will. Whatever I need to do to keep moving and doing and going and feeling halfway normal, I will do.
8. I'm not stupid. I have cognition problems caused by the hag. They cause me to forget things very quickly. Like seconds after I've heard it. I can't spell worth a crap anymore. Something I never had trouble with in my old me. I can't learn new things quickly, like before. It's embarrassing and I hate it but it is what it is. I can't multi-task anymore. I have to finish one thing completely before I start another. This causes me to be slow, something I really really hate! Especially at work. It's extremely frustrating. So, if I can't remember your name, or forget what you just said, or ask questions about very simple things I should know, please try and ignore it. I do. : )
9. If I have a good day where I've saved up a day or two's worth of energy and can be close to normal, let me enjoy it without judging me because I can't do it every day. It's very hurtful to have someone say, "You did it yesterday, why not today?" It's just not gonna happen. I've made my peace with it. I hate to feel judged if I have to turn somebody down on an invite or change plans at the last minute or cut something short. Believe me when I say, nobody hates that crap more than I do. It takes a lot of energy out of my cup to deal with stress. My personality won't allow me to overlook snide remarks, or eye-rolling or assumptions about my character without causing me a great deal of stress. But I'm working on it. Stress by the way, is a game changer, deal breaker, bad moojoo for any ms'er. It exacerbates every symptoms we have.
10. I'm not obsessed with this disease because I need to talk about it. I plan every day, every hour, every activity and every action around it. The way I do things. Sit or stand. Walk fast, or walk slow. Park close, or am I comfortable walking a bit. It drives me freakin nuts some days. I don't want to talk about it constantly, but I do need to be able to be honest and gripe a little bit occasionally. I'm pretty sure that's normal.
I've surrounded myself with good people. I love my family, my husband, my daughter and the people I work with. I love my friends and my dogs. I love my extended family and the ones I rarely see. To be understood is a huge step in ridding myself of unwanted stress. Thus, helping me feel better! I don't want to be felt sorry for, or pitied. I have a great life in spite of it. I count my blessings every day and things could be so much worse. There's a lot of suffering in this world and in comparison to most, I'm doing ok. : )
Nancy
Here's the things I wish people knew and understood about me and the ole hag. I'm writing this to hopefully cut down on the stress caused by not being understood. I don't blame anybody for not understanding. This disease is invisible and confusing and there is no way to really get it, unless you get it. I don't care what people think of me on the little stuff in life. I'm old enough to know better! But when it comes to the content of my character I care a great deal what others think. Thus, the reason for this list. I just want to be understood. Every body I've met or talked to who has this ole hag struggles with this desire to be understood. Not pitied, just
understood.
1. I'm not fine, I'm dealing with it. I say I'm fine, because that's what 99% of people want to hear. It would be time consuming if I were honest and said, "well, today is sucking less than yesterday because I got 12 hours of sleep and have taken a handful of pills to ease the symptoms enough to appear fine" Saying I am fine is working for me. I like it, even though it's a little white lie. : )
2. I don't look sick, but I am. Like it or not, there is no escaping my body. My body is infected with this hag and she reminds me of it every minute of every day. Again, I've learned to hide the fact that I'm sick, by coping and handling it without involving others. That and the drugs I wish I didn't have to take.
3. I get about 7 cups of energy per week. One for each day and that cup isn't enough. So I borrow from the next days cup, knowing I will need to replenish the cup by resting. That entails sleeping and laying around much more than I would like. If I use only 1/4 of my cup by sleeping most the day, I might have enough left on the next days cup to do something I'd like to do. Rather than just doing what I must do. Like working, cleaning, laundry, or shopping. Right now most of my cups are spent Monday, Wednesday and Friday. Because those are the days I work. I'm SO GRATEFUL to have a job that allows me to continue to do what I love, which is nursing. The downside is my other four days don't have full cups in them so I pick and choose what's worth recovering from.
4. I'm not lazy. I've never liked lazy people. It's a pet peeve of mine. I enjoyed outworking and outdoing others in my former life. The one before the hag moved in. If I appear lazy, just deal with it anyway you can. But leave me out of it. It makes me very angry and it hurts my feelings if you convey those negative feelings towards me.
5. I'm not depressed. The symptoms of depression mimic the life of anyone dealing with the hag. Tiredness, isolation, inability to enjoy anything, sleeping a lot, all symptoms of depression.
All Ms'ers are tired. They don't go out or get together with people much because it uses some of the cup that is reserved for necessities. If it seems we don't enjoy something, it's probably because we're wiped out or hurting. Usually both. Sleeping is the only way to refill the cup. So, it's a necessary evil. I take medicine for depression because I need it. Anybody who says they could deal with this crap without having a little help from meds, is either ignorant or lying. MS itself causes changes in the brain that actually CAUSE depression. Just like it causes muscle spasms or any of the other million things that could go wrong.
6. Every day is a brand new day. I have no idea what I will feel like tomorrow. Never mind, a week from now! Planning anything stresses me out because I know in the back of my mind I might not be able to go or do the planned event. It will depend on the hag and the cups or lack thereof of energy. Also, if I make a plan, I tend to push myself to hold up my end of the bargain since it was a planned event that I committed to doing. And pushing myself not only uses up twice as many ounces in a cup, I pay for every push. Pain, spasms, cognitive fog, exhaustion that is beyond anything I ever experienced in my pre-ms days. Pushing oneself when you have MS is like smoking a pack of cigarettes to ease your lung cancer. It doesn't work. Matter of fact, it makes it worse.
7. I'm not a druggy, who likes taking pills. The pills I take keep me moving. They are what saves me from a life of being miserable. I take 2 kinds of muscle relaxers, 3 times a day and 4 times a day. I take Tramadol, a mild narcotic like drug for pain. Something hurts every single day without exception. I take a pill that gives me a temporary extra 1/2 a cup so I can perform better and do more. Please don't judge me for that. As a nurse who works in a pain clinic, I've seen what being addicted to narcotics can take from a life. I have no intention of going there. However, I have much more compassion for those that have real reasons to take them. Further down the road if I need to take strong narcotics to have a life, I will. Whatever I need to do to keep moving and doing and going and feeling halfway normal, I will do.
8. I'm not stupid. I have cognition problems caused by the hag. They cause me to forget things very quickly. Like seconds after I've heard it. I can't spell worth a crap anymore. Something I never had trouble with in my old me. I can't learn new things quickly, like before. It's embarrassing and I hate it but it is what it is. I can't multi-task anymore. I have to finish one thing completely before I start another. This causes me to be slow, something I really really hate! Especially at work. It's extremely frustrating. So, if I can't remember your name, or forget what you just said, or ask questions about very simple things I should know, please try and ignore it. I do. : )
9. If I have a good day where I've saved up a day or two's worth of energy and can be close to normal, let me enjoy it without judging me because I can't do it every day. It's very hurtful to have someone say, "You did it yesterday, why not today?" It's just not gonna happen. I've made my peace with it. I hate to feel judged if I have to turn somebody down on an invite or change plans at the last minute or cut something short. Believe me when I say, nobody hates that crap more than I do. It takes a lot of energy out of my cup to deal with stress. My personality won't allow me to overlook snide remarks, or eye-rolling or assumptions about my character without causing me a great deal of stress. But I'm working on it. Stress by the way, is a game changer, deal breaker, bad moojoo for any ms'er. It exacerbates every symptoms we have.
10. I'm not obsessed with this disease because I need to talk about it. I plan every day, every hour, every activity and every action around it. The way I do things. Sit or stand. Walk fast, or walk slow. Park close, or am I comfortable walking a bit. It drives me freakin nuts some days. I don't want to talk about it constantly, but I do need to be able to be honest and gripe a little bit occasionally. I'm pretty sure that's normal.
I've surrounded myself with good people. I love my family, my husband, my daughter and the people I work with. I love my friends and my dogs. I love my extended family and the ones I rarely see. To be understood is a huge step in ridding myself of unwanted stress. Thus, helping me feel better! I don't want to be felt sorry for, or pitied. I have a great life in spite of it. I count my blessings every day and things could be so much worse. There's a lot of suffering in this world and in comparison to most, I'm doing ok. : )
Nancy
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