This weekend, I made special cookies and cream ice cream for my sweetheart. His favorite flavor. His favorite treat, aside from good chocolate cake. I used milk kefir and coconut sugar. It also has real heavy cream, and good vanilla extract and real Oreos. But, no, it doesn't taste like regular ice cream. It is tangy, which is unexpected. I can easily get past the unexpected and move on to enjoying it, even though it is different and not sweet, like it's expected to be. Sweetie could not. He thanked me for making it and said he was sorry but, he just didn't like it at all and that there was now more for me. My feelings weren't hurt. I am not emotionally invested in my food, I just wanted him to have some of the super nutritious kefir, that's all.
Then it led to a discussion about the fact that I have changed my diet so drastically so many times in order to follow hope that one of the changes would ease the pain. I explained to him that I can get used to and tolerate food that is unusual tasting if I think there's a chance that it will help symptoms. You would not believe what I am willing to do to ease symptoms. He has not ever had to do that. He has never faced food and said, ok, what can I change so that this stops or starts me feeling a certain way. He isn't plagued with anything wrong inside him. Thank Our Lord.
I finally understood why he doesn't understand what this is like for me. I finally get why friends and family can never wrap their heads around it either. It is not only the addition of symptoms in my life that make me different, it is the fact that I have lost something they have not lost. My health.
He has not been a person who has lost something who is desperately trying to get it back. Here is the analogy I can think of. I don't know what it would be like to be bald. Unwillingly bald. I have no idea what lengths I'd go to in trying to regrow my hair. I don't know what it's like to be truly homeless. What might I resort to? Or really, truly hungry. Would I steal? Would I maybe even hurt somebody else if it meant filling my belly? Or just some bites of food? Would I? I don't know. I can't know. I have never faced it. Would I fight to save an unborn baby in me instead of saving myself? I have no idea. I cannot say unless I'm in the situation. I could guess, but that would just be a guess. I can't really know what that's like. Just like most everyone I know has never faced life in pain. They see what I do to try to live within my limits, but witnessing is not the same as knowing. I have eaten and drank some stuff I can hardly believe, just to try to live without this, or to make it less.
So, it really shouldn't surprise me that he doesn't want to eat stuff which he just learns to tolerate. But, I will gladly continue to do so. Most days, I think if you ask me, I do have some hope that my situation could get better. Unfortunately, I also think it could get worse. But, I try to hang my hat on the better hook and there is more ice cream for me. So I will continue to spend a large chunk of my daily allotment of energy preparing food which isn't that hard to prepare, if you had predictable strength and stamina. For me, it is hard. For me, it is a sacrifice. It means choosing to make special food or cleaning my bathroom. I am limited. So very limited. Everyone wants a clean bathroom, don't they?
Have happy days!
Monday, October 27, 2014
Sunday, October 19, 2014
Now this is just silly
In defense of my behavior, I point out the pain.
If you had walked in on me in my kitchen just now, as my husband just did, you'd have seen the following: Me, standing at my island, straining my precious milk kefir (as I do every day that I have the energy and strength). The thing is that it is still mostly liquid, since I didn't mess with the ones I want to be cheese. And I do try to be neat. But, sometimes liquids splash. Sometimes there are little puddles on counters or drops that end up on fingers or arms. You would have seen me grooming my arms and fingers like a cat to get all that precious milk in me. AND, you would have seen me bend over and lick my counter tops. It's true. I want to get as much of any good thing in me as is humanly possible. I did scrub my counters beforehand, as I always do when I mess around with my bacteria. But, I'm not ashamed, I licked my counter top like it was a cookie dough spoon. Cleaned it as well as my dog would have.
As an observer, I can see how this looks to the untrained, un-pained eye. It does not taste good. Milk kefir to me, is a bit like tofu in that it tastes like whatever you combine it with. (This morning's breakfast was a pumpkin pie smoothie, for example.) So it isn't like licking chocolate frosting off my arms and fingers. But, I did it by gosh, and I will rinse and repeat. I want this to change. This life. This painful s%#*! So, if good bacteria help at all, and I can feel that they do, I will learn the grooming from my sweet cat and the slopping up from my sweet dog, and I WILL get that good stuff in my belly. After all, who am I impressing??? Just lick it up. That's what I'd tell a child to do if I knew the surface had been cleaned.
I felt like I needed to be honest and transparent about my kitchen behaviors with y'all. Thank you for listening.
Have happy happy days
If you had walked in on me in my kitchen just now, as my husband just did, you'd have seen the following: Me, standing at my island, straining my precious milk kefir (as I do every day that I have the energy and strength). The thing is that it is still mostly liquid, since I didn't mess with the ones I want to be cheese. And I do try to be neat. But, sometimes liquids splash. Sometimes there are little puddles on counters or drops that end up on fingers or arms. You would have seen me grooming my arms and fingers like a cat to get all that precious milk in me. AND, you would have seen me bend over and lick my counter tops. It's true. I want to get as much of any good thing in me as is humanly possible. I did scrub my counters beforehand, as I always do when I mess around with my bacteria. But, I'm not ashamed, I licked my counter top like it was a cookie dough spoon. Cleaned it as well as my dog would have.
As an observer, I can see how this looks to the untrained, un-pained eye. It does not taste good. Milk kefir to me, is a bit like tofu in that it tastes like whatever you combine it with. (This morning's breakfast was a pumpkin pie smoothie, for example.) So it isn't like licking chocolate frosting off my arms and fingers. But, I did it by gosh, and I will rinse and repeat. I want this to change. This life. This painful s%#*! So, if good bacteria help at all, and I can feel that they do, I will learn the grooming from my sweet cat and the slopping up from my sweet dog, and I WILL get that good stuff in my belly. After all, who am I impressing??? Just lick it up. That's what I'd tell a child to do if I knew the surface had been cleaned.
I felt like I needed to be honest and transparent about my kitchen behaviors with y'all. Thank you for listening.
Have happy happy days
Thursday, October 16, 2014
Under other control
I really have no idea how many folks read this blog or who they are. Several have identified themselves to me but, beyond them, I don't know. I don't promote it, I do post a link to it on social media but, I have no need to advertise or promote. I'm not selling anything. Just putting my story out there. The extra energy it would take to figure out how to further spread it is beyond my scope. So, if you know somebody you think my words may help, please do share. That's the reason I'm writing to begin with.
I had an epiphany about my life the other night at about 12:30. It was a day that I could only be out of my bed for about 4 hours due to severe symptoms. Here is what I realized:
I think all of my life up to the bisection (the onset of this disease on 3/12/05) was preparing me for the changes and adaptations of living with fibromyalgia.
I have never really lived "free". Of course, not in the sense of slavery, don't misunderstand. My childhood was blissful. Then, in my early adolescence, I worked. There were expectations of me that were sudden and different and I had to just figure it out as I went. I worked hard through my teen years and went to college, still working, and looking toward the horizon when I could be a bit more relaxed from all the work.
But, I was too naive and I married a controlling man who abused me. I absolutely accept my share, but only my share, of the relationship. I was controlled by him from the word go. This was '91-'97. No freedom. We're talking about the checking the odometer and walking on eggshells kind of control.
I managed, with my army of angels, to get away with my life and my body in one piece in November 1997. After that, I was friends with someone who had clear dreams of his own, and since I had none of my own, after all I had just escaped from prison, his entered me through osmosis or something. And, as time went on, he controlled me too. Some of this is because he sort of swooped in with his agenda before I could really get my feet on the ground to figure out what mine might be. In this sense, I was still controlled. I was not fully free. I lived with him in a roommate situation and didn't have my own car most of the time, pooled my money with him, and got the Spanish Inquisition if I wanted to date somebody. (Later, I realized that this is because he wanted me for himself and we did become engaged. Everyone makes mistakes.) I was not free to decide. When I broke it off, and then months later when I moved out, I actually moved to a weekly rate motel just to be physically free of him.
During this time, I had enrolled in my local college and was determined to finish my undergraduate degree. I also was in a self-defense class at the YMCA. (That class is where I met my sweetheart.)
I moved into my first apartment of my own in Aug. '04. So, I was tied to the concept of still working through school but, I was more free than I had ever been.
I moved on to a relationship which is the best of my life where control is not an issue. Not at all. However, I still wanted to finish school and was not where I wanted to be in my own accomplishments, I wanted to be more. I didn't feel free. I felt driven. I was still in school. Slogging through college as an adult is slow and arduous, especially while working.
The spring semester of '05 began and I was a full-time student, working part-time. Not free. Then fibromyalgia hit in March, on the 13th to be exact, and every single other day before then should have prepared me for how "not free" I'd be in my years to come.
My life is a dictatorship. My body, the dictator. If I rebel against the command, I pay a higher price for the disobedience. I get no say, no vote. No democracy here. I have sometimes been able to separate me, the inside Marie, from my body, the sick Marie. I look at her and just think "Damn-it. Again with the naps? Really? There's other fun stuff we could do today.... even if not fun, just not sleeping life away..." But, she absolutely is in control. It is required. She dictates it. So, again, I live under the control of another. Another person, another whatever, but not myself. Not Marie. If I think of dictators in history, it really is a good comparison. They are ruthless. They are just a little bit crazy and quite unpredictable. There seems to be some underlying strategy but, no one understands it. Check. Check. Check. Check. Also, they don't care if they kill you. Check. This is what it feels like. It does not feel like my body is protecting me. It feels like it has turned. I know it is not healthy to see it that way so, I won't indulge in these thoughts long, but, just wanted to share the epiphany. I am not free. And my whole life of being not free has at least prepared me for coping. Prepared me for asking for help. Prepared me for losing my independence. Again.
So, in the dictatorship that is my existence, I will now attempt to put my laundry away. It has taken me 4 days to get it washed, dried, out to the living room, folded, and into the closet. I need only now to put it where it belongs. I will likely be told when to stop rather than deciding on my own when to stop. But there is this. Hope that I will finish it before the commander screams. And then I can do my little accomplishment happy dance. And that, my friends, my beloved, is what I live for. Teeny, tiny accomplishments. Let's all enjoy our accomplishments today, however big or small they may be. And be thankful for the day.
Have happy happy days!!!
I had an epiphany about my life the other night at about 12:30. It was a day that I could only be out of my bed for about 4 hours due to severe symptoms. Here is what I realized:
I think all of my life up to the bisection (the onset of this disease on 3/12/05) was preparing me for the changes and adaptations of living with fibromyalgia.
I have never really lived "free". Of course, not in the sense of slavery, don't misunderstand. My childhood was blissful. Then, in my early adolescence, I worked. There were expectations of me that were sudden and different and I had to just figure it out as I went. I worked hard through my teen years and went to college, still working, and looking toward the horizon when I could be a bit more relaxed from all the work.
But, I was too naive and I married a controlling man who abused me. I absolutely accept my share, but only my share, of the relationship. I was controlled by him from the word go. This was '91-'97. No freedom. We're talking about the checking the odometer and walking on eggshells kind of control.
I managed, with my army of angels, to get away with my life and my body in one piece in November 1997. After that, I was friends with someone who had clear dreams of his own, and since I had none of my own, after all I had just escaped from prison, his entered me through osmosis or something. And, as time went on, he controlled me too. Some of this is because he sort of swooped in with his agenda before I could really get my feet on the ground to figure out what mine might be. In this sense, I was still controlled. I was not fully free. I lived with him in a roommate situation and didn't have my own car most of the time, pooled my money with him, and got the Spanish Inquisition if I wanted to date somebody. (Later, I realized that this is because he wanted me for himself and we did become engaged. Everyone makes mistakes.) I was not free to decide. When I broke it off, and then months later when I moved out, I actually moved to a weekly rate motel just to be physically free of him.
During this time, I had enrolled in my local college and was determined to finish my undergraduate degree. I also was in a self-defense class at the YMCA. (That class is where I met my sweetheart.)
I moved into my first apartment of my own in Aug. '04. So, I was tied to the concept of still working through school but, I was more free than I had ever been.
I moved on to a relationship which is the best of my life where control is not an issue. Not at all. However, I still wanted to finish school and was not where I wanted to be in my own accomplishments, I wanted to be more. I didn't feel free. I felt driven. I was still in school. Slogging through college as an adult is slow and arduous, especially while working.
The spring semester of '05 began and I was a full-time student, working part-time. Not free. Then fibromyalgia hit in March, on the 13th to be exact, and every single other day before then should have prepared me for how "not free" I'd be in my years to come.
My life is a dictatorship. My body, the dictator. If I rebel against the command, I pay a higher price for the disobedience. I get no say, no vote. No democracy here. I have sometimes been able to separate me, the inside Marie, from my body, the sick Marie. I look at her and just think "Damn-it. Again with the naps? Really? There's other fun stuff we could do today.... even if not fun, just not sleeping life away..." But, she absolutely is in control. It is required. She dictates it. So, again, I live under the control of another. Another person, another whatever, but not myself. Not Marie. If I think of dictators in history, it really is a good comparison. They are ruthless. They are just a little bit crazy and quite unpredictable. There seems to be some underlying strategy but, no one understands it. Check. Check. Check. Check. Also, they don't care if they kill you. Check. This is what it feels like. It does not feel like my body is protecting me. It feels like it has turned. I know it is not healthy to see it that way so, I won't indulge in these thoughts long, but, just wanted to share the epiphany. I am not free. And my whole life of being not free has at least prepared me for coping. Prepared me for asking for help. Prepared me for losing my independence. Again.
So, in the dictatorship that is my existence, I will now attempt to put my laundry away. It has taken me 4 days to get it washed, dried, out to the living room, folded, and into the closet. I need only now to put it where it belongs. I will likely be told when to stop rather than deciding on my own when to stop. But there is this. Hope that I will finish it before the commander screams. And then I can do my little accomplishment happy dance. And that, my friends, my beloved, is what I live for. Teeny, tiny accomplishments. Let's all enjoy our accomplishments today, however big or small they may be. And be thankful for the day.
Have happy happy days!!!
Monday, October 13, 2014
My poor little body
For the last 2 days, and so far today, there has been stormy, cool weather as we change from summer to fall. My body is reacting quite badly, as is per usual during season changes. I spent all of Saturday (our 6th wedding anniversary) and all of Sunday in bed. One of the few good things about having gone mostly grain free in my diet is that now, when I am in bed and forced to fast because of inability to get myself to food, I don't suffer as much, or at all. I used to get a horrible migraine and feel starvation if I went only 5 hours without food but both days this week, it was more than 9 hours between my breakfast smoothie and the next time I ate or drank anything. I would have if I had had a butler or ladies maid waiting on me, I'd have ordered some food and water, especially water. But, I didn't have presence of mind for it. And during times when my brain is so thoroughly erased, it is actually more effort to ask Tim to get me food and tell him what I want. That's how hard it is to think. Like trudging through sludge.
Today is no different. The exception is that I've been awake 2 and a half hours and have at least gotten a couple of things done. I am doing chores in 10/20 mode. Ten minutes of activity, in my wheelchair mind you, followed by 20 minutes of rest. If I stray into the 15/15 mode, I pay exponentially for it.
Unfortunately, I realize now that I haven't given the animals clean water yet this morning. Now, I can't. There's no strength left to do it. I have to sleep again and hope to regenerate some more.
Anyway, the little observation I had while I got into the bath about an hour ago was this: I actually feel sorry for my body. I don't feel sorry for myself, it's not that. It's as if my body were a separate thing, like a pet, or a friend's body, and I feel so sorry for it. For not being able to ease its suffering, for just sitting by and watching. I can't help it feel better. All I can do is sleep so I'm not aware of its suffering, if I can stay asleep. Also, that makes it so I, this observer Marie, sleep my life away, not getting to enjoy, not getting to really live my days, my years. Just asleep as opposed to agony. Yes it's an easy choice but, a crappy one. My poor little body. I wish I could help it.
Grateful today that I live with a healthy person. Pray that I can keep giving my worries about my future to God to hold. After and during days like these, those worries can terrify me. So grateful to have a warm bed in a safe home with someone who loves me here some of the time.
Have happy days!
Today is no different. The exception is that I've been awake 2 and a half hours and have at least gotten a couple of things done. I am doing chores in 10/20 mode. Ten minutes of activity, in my wheelchair mind you, followed by 20 minutes of rest. If I stray into the 15/15 mode, I pay exponentially for it.
Unfortunately, I realize now that I haven't given the animals clean water yet this morning. Now, I can't. There's no strength left to do it. I have to sleep again and hope to regenerate some more.
Anyway, the little observation I had while I got into the bath about an hour ago was this: I actually feel sorry for my body. I don't feel sorry for myself, it's not that. It's as if my body were a separate thing, like a pet, or a friend's body, and I feel so sorry for it. For not being able to ease its suffering, for just sitting by and watching. I can't help it feel better. All I can do is sleep so I'm not aware of its suffering, if I can stay asleep. Also, that makes it so I, this observer Marie, sleep my life away, not getting to enjoy, not getting to really live my days, my years. Just asleep as opposed to agony. Yes it's an easy choice but, a crappy one. My poor little body. I wish I could help it.
Grateful today that I live with a healthy person. Pray that I can keep giving my worries about my future to God to hold. After and during days like these, those worries can terrify me. So grateful to have a warm bed in a safe home with someone who loves me here some of the time.
Have happy days!
Thursday, October 9, 2014
Involuntary sleep shift
I don't know really why this has happened, but I suspect it can partially be blamed for being on a cruise in the Pacific for 7 days and the time changes incurred. So, now I get 9 hours and a nap during the day. But, my 9 hours are between midnight and 9am. This is so screwy and unusual for me and frankly distressing that I have been resisting it for weeks. Now, I have decided to embrace the sleep. Whenever it finds me, I will open myself to it. The time of the day or night doesn't matter as much as the quality and quantity. So, don't come over for breakfast before 10am.
Just one more thing that I don't like, but, I'm gonna do the dance steps and follow along. Resistance being futile, and all.
Nap time now.
Happy days!
Just one more thing that I don't like, but, I'm gonna do the dance steps and follow along. Resistance being futile, and all.
Nap time now.
Happy days!
Saturday, October 4, 2014
Between them and God
Here is a thought that I put on my refrigerator. It has helped my attitude in many situations. I used to be very self-conscious about how conspicuous I looked, at my age, with a cane, or in a wheelchair, when there seemed to be nothing wrong with me. Well, that's over. Here is what I have come to know:
Whatever people think about me is none of my business.
There. Now, I don't care. People in my life who love me, truly love me and know my truth, think loving things about me. Also, whatever they choose to tell me, that is my business, but nothing else. Those other thoughts are between them and God. I am no more or less important to Him than each of His other children. Every single child has lessons to learn.
This is helpful because now: I don't care if I look like a homeless person when I go out because those clothes happen to be the ones that don't hurt me that day. If someone pities me, scorns me, or even prays for me, all of that is between them and God, and none of my concern. When a woman sees me climb out of my disabled plated car and continues to stare openly at me trying to see what disability I have, again, between her and God. Her bad judgement and obscene manners are none of my business. Yes, I could cop an attitude and let it ruin hours of my day but, really, why bother? She's being ruder than rude and answers to HIM for her behavior not me. None of my business.
I slept many more hours this week than I spent awake. Those who know my struggle understand I would not choose this as the way I would live, if I had choices. Any others who might label me lazy, or disbelieve my plight of fatigue, that is between them and God. He will find a way to put them on the road to love. If they resist that road, it is sad for them, and none of my business.
I, by the way, just got home from walking the dog! Yay, ME!!! Just a few days ago, I could not walk at all. AT ALL. What a roller-coaster this life of mine is. No, we did not walk for long, but I did get out of my house into the world and the beautiful day. My now healthy lovey dog is getting over his bug or whatever and had his tail held high. We are blessed.
Have happy happy days!!
Whatever people think about me is none of my business.
There. Now, I don't care. People in my life who love me, truly love me and know my truth, think loving things about me. Also, whatever they choose to tell me, that is my business, but nothing else. Those other thoughts are between them and God. I am no more or less important to Him than each of His other children. Every single child has lessons to learn.
This is helpful because now: I don't care if I look like a homeless person when I go out because those clothes happen to be the ones that don't hurt me that day. If someone pities me, scorns me, or even prays for me, all of that is between them and God, and none of my concern. When a woman sees me climb out of my disabled plated car and continues to stare openly at me trying to see what disability I have, again, between her and God. Her bad judgement and obscene manners are none of my business. Yes, I could cop an attitude and let it ruin hours of my day but, really, why bother? She's being ruder than rude and answers to HIM for her behavior not me. None of my business.
I slept many more hours this week than I spent awake. Those who know my struggle understand I would not choose this as the way I would live, if I had choices. Any others who might label me lazy, or disbelieve my plight of fatigue, that is between them and God. He will find a way to put them on the road to love. If they resist that road, it is sad for them, and none of my business.
I, by the way, just got home from walking the dog! Yay, ME!!! Just a few days ago, I could not walk at all. AT ALL. What a roller-coaster this life of mine is. No, we did not walk for long, but I did get out of my house into the world and the beautiful day. My now healthy lovey dog is getting over his bug or whatever and had his tail held high. We are blessed.
Have happy happy days!!
Thursday, October 2, 2014
Remembering the issues
This is one of the most insidious parts of the fibro syndrome. If you don't have a specific symptom for a while, it is actually surprising and disturbing when it happens again. It's like I'm able to forget that pain was THAT bad or that fatigue (which is what I have now) is so severe. Otherwise, I'd think I were really quite ill.
Yes, I took a long road trip on the weekend. Yes, it did wear me out. Yes, I did take care of myself, taking naps, getting proper food, not overexposing myself, etc.
Yesterday, I was only able to be out of my bed for 4 hours out of 24. Today I have been up trying to do chores for two hours and I just can't go on. It feels like I weigh about twice what I do, and that most of that weight is dead weight which I am dragging around. I cannot walk at all. I have not even brushed my teeth or had a bath. The animals have yesterdays water.
(Oscar came home from boarding with diarrhea and I am trying to watch him carefully while I'm awake but, how can I monitor a dog if I cannot even keep myself fed?)
So, I am just gonna do what my body is screaming for, go back to bed. Somehow, even sitting upright and typing is sucking the very life out of me. This is, excuse me, shitty.
Making sure I have a grateful heart, I thank God that I have a warm, safe, happy, comfortable home to keep my bed in and that there are not other demands in my life which absolutely require my attention. Hope I get a bath sometime today.
Have lovely days, on my behalf, too!
Yes, I took a long road trip on the weekend. Yes, it did wear me out. Yes, I did take care of myself, taking naps, getting proper food, not overexposing myself, etc.
Yesterday, I was only able to be out of my bed for 4 hours out of 24. Today I have been up trying to do chores for two hours and I just can't go on. It feels like I weigh about twice what I do, and that most of that weight is dead weight which I am dragging around. I cannot walk at all. I have not even brushed my teeth or had a bath. The animals have yesterdays water.
(Oscar came home from boarding with diarrhea and I am trying to watch him carefully while I'm awake but, how can I monitor a dog if I cannot even keep myself fed?)
So, I am just gonna do what my body is screaming for, go back to bed. Somehow, even sitting upright and typing is sucking the very life out of me. This is, excuse me, shitty.
Making sure I have a grateful heart, I thank God that I have a warm, safe, happy, comfortable home to keep my bed in and that there are not other demands in my life which absolutely require my attention. Hope I get a bath sometime today.
Have lovely days, on my behalf, too!
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