This entry will be an example of how deep in fog I am today. I think I may be able to disgise it since I'm going to type slow. Also, leaving spelling problems in. I'm from the age when you spelled it right the first time and didn't rely on spell check. Anyway, for some reason, my fibro fog is justy super thick today. I mean, I could scoop it out like meringue in front of me. Visibility is nothing, or maybe like 1 foot. Tim just said to me "what did you do today/" I replied "I fed them, and I did a couple loads of laundry and I did the dishes. And I fed myself. I nd I spent an awful lot of time wondering what to do. It is so nice that he gets what that means.
Something I sort of discovered is thatI do have muscle memory in my arms, hands, and my hamstrings. Here is how I know. If I sit in my wheelchair and wheel myself to the other room I'm able to retain the thought of why I'm going there and what to do about it. The action of my arms and hands having something mechanical to do and the lack of risk on the part of my legs, I don't know why, but, I have noticed the effect 3 separate times. If I walk into a room, its like I've nefer been there, but if I wheel in, that is so much easier on my mind that not only can I remember the reason, I also can get some steps done toward accomplishing the thing itself, if not the whole thing. Its the memories in my muscles. It has to be. My mind is just addled. Really. So, I used to used my chair about 1/4 of the time, now I use it 3/4 of the time. I can't think at all when I'm onmy feet. Also, had another 2 events or incidenceds, whichever you like to call it where I fall/faint/go down today. And the 4 that happened yesterday, T was home. Two of them he was right beside me. Today, I just paid attention to the precursor, which is a tinghling in my knees, and then thats it, legs no longer support weight and vision is grey on the way to black.
Very frustrating.
Closing with gratitude, I did get to napo for an hour and a half before O woke me. I have a warm safe, place to nap, and provision for me to be so comfortable as I lnavigate my dense fog. Also, gratitude that I don't try anything stupid like fire, or swimming, or lifting things, you know. All the things that would put me into actual trouble. My angels up there at least keeping me on the main highway.
Have happy days my friends. I hope this non-corrected copy doesn't offend any. It is how I think even now after my brain is at its freshest today. Porridge> Oatmeal>
Monday, January 19, 2015
Monday, January 5, 2015
Two thoughts: A metaphor and a precaution
I have thought of two things I wanted to share here with you but, right now I can only remember one, and that is because in the middle of the night, I could jot it down with my snazzy stylus on my smart phone. How fun is that? Really. Oh, and I just got the other one back. First music. Then canes.
Probably lots of people before me have made this metaphor about pain and music or pain and sound, in general. If you are in the presence of someone in pain, it is extremely hard to understand what they are feeling. They cannot adequately communicate it. They just can't. Even if they had the incredible vocabulary to put it into words, the pain itself slams shut the file cabinet in the brain marked words and all they are left with is generalizations like aching, stabbing, burning. I say this. Think of pain as a symphony of instruments, hoping to not have one playing at the same time as another. I have a low sort of thrumming pain in my arms right now which I imagine is what a very low note on a clarinet or flute sounds like. Sort of melancholy. My fingers, however, sound like a piccolo at its highest register. In fact, I'm sure I would hurt less if they were gone. And music is so fluid, like the nervous system is. I could be at a medium level 5-6 pain which is burning but, if I say, imagine a saxophone blues number on high speed. That gives a different metaphor. Here are the sounds you don't want to hear. Trumpets. If the trumpets are blowing, I am generally unable to even spell my name. I have been known to not understand what the word "left" meant. Those damn trumpets. And sometimes, trumpets play along with other instruments, just suddenly, for a measure or two, to keep me on my toes, there will be say 20 seconds of trumpets while I am just coping with my saxophone stuff. The sciatic area would be trombones or tubas. I think head pain is the absolute worst. Of all the pain I have endured, migraine is the most debilitating. Frankly, the only thing it could be is the snare drum with cymbals. And being played rock style. Like the drums are the highlight and everything else has gone quiet so every single sound wave of every hit travels into my brain blinding me with its sound. A deep depression is the sound of a wailing unending cello. A heartbreaking sound.
The fibromyalgia pain syndrome feels very much like a song, really. A never-ending song. Yes, there are rests when things are silent, but, there are times when most of the instruments are playing their parts and doing so very well. At those times, I can not get up and leave the symphony hall. It is IN me. I have no escape from it except that which I create through mindfulness, laughter, and faith. Yes, with clarinets I can fall asleep. Also with flutes. But if a trumpet is playing, how, answer me that, how could I fall asleep? Then in the morning, I have just a few notes off the xylophone or something or a very light brush of a cymbal. Anyway, I am sure I'm not the first to denote this metaphor but, in case any of you wonder how we describe pain so differently, it is because it IS so different. The Canon in D Minor, my favorite work ever, does not sound or feel like John Denver's Annie's Song and that does not feel or sound like something by Ozzy Osborne.
So, my second thing is that I have an issue I don't understand which is different about me from some others in my similar situation. I gladly and willingly walk with a cane. I almost always use a quad cane now instead of just the single. I bought one the day I woke up with these symptoms and it has been part of my life since. (Yes, there was once a remission at which time it was unnecessary.) Also, I own 2 wheelchairs. One lives in my house, one lives in our car. Now I don't think of myself as having a fear of falling because I believe that these measures are the practical and prudent actions I can take to protect myself. So, I move about at my pace, carefully and anybody who is bothered by my slowness should say a prayer of thanksgiving that they can walk without any pain. But, many friends I have, do not use a cane. I don't understand this. I'm unsure if the condition is indeed affecting me in a more severe way than in others I know. One thing medical science does know for sure about fibro is that no two of us are alike. I am disabled by it and have been since its sudden onset on 3/15/05.Its possible that it may be vanity or stubbornness on their part. Also, I have done much volunteer work in nursing homes and I know the truth is that generally, if people who cannot be very active fall and break a large bone or joint, they do get sent to a rehab/nursing home, if they can't be cared for in their own house. Sometimes that is the first step in a long line of steps that keeps them in that nursing home for the remainder of their days. They can be bleak places. I want to remain as independent as I can possibly be for as long as I can be. And sometimes it breaks my heart that I am dependent. It is just grievous to need somebody else to do a small household activity for me. But, also, it is what it is. So, someday, I may need to face that kind of situation. I want to have any stubbornness or vanity well behind me and get on with the business of living each day happily. Further, why would I risk twisting an ankle or tearing a knee ligament and letting the trumpets play more and louder. Foolishness, I say.
Grateful today for blogging right before lunch which includes: This house, which is warm with gas, and comfortable with furniture. It's feeling of safety from the alarm and the dog. Clarity of my mind since, right now, only the piccolo in my fingers has a part. The food I'm about to go choose for my lunch today and what I will take out for dinner tonight. The bathtub I can fill with hot water and the soaps and shampoos of my choosing for use on my skin. Every single bit of it. Pure gratitude. And for my faith which never wavers. And my friends and family who buoy me in every storm.
Probably lots of people before me have made this metaphor about pain and music or pain and sound, in general. If you are in the presence of someone in pain, it is extremely hard to understand what they are feeling. They cannot adequately communicate it. They just can't. Even if they had the incredible vocabulary to put it into words, the pain itself slams shut the file cabinet in the brain marked words and all they are left with is generalizations like aching, stabbing, burning. I say this. Think of pain as a symphony of instruments, hoping to not have one playing at the same time as another. I have a low sort of thrumming pain in my arms right now which I imagine is what a very low note on a clarinet or flute sounds like. Sort of melancholy. My fingers, however, sound like a piccolo at its highest register. In fact, I'm sure I would hurt less if they were gone. And music is so fluid, like the nervous system is. I could be at a medium level 5-6 pain which is burning but, if I say, imagine a saxophone blues number on high speed. That gives a different metaphor. Here are the sounds you don't want to hear. Trumpets. If the trumpets are blowing, I am generally unable to even spell my name. I have been known to not understand what the word "left" meant. Those damn trumpets. And sometimes, trumpets play along with other instruments, just suddenly, for a measure or two, to keep me on my toes, there will be say 20 seconds of trumpets while I am just coping with my saxophone stuff. The sciatic area would be trombones or tubas. I think head pain is the absolute worst. Of all the pain I have endured, migraine is the most debilitating. Frankly, the only thing it could be is the snare drum with cymbals. And being played rock style. Like the drums are the highlight and everything else has gone quiet so every single sound wave of every hit travels into my brain blinding me with its sound. A deep depression is the sound of a wailing unending cello. A heartbreaking sound.
The fibromyalgia pain syndrome feels very much like a song, really. A never-ending song. Yes, there are rests when things are silent, but, there are times when most of the instruments are playing their parts and doing so very well. At those times, I can not get up and leave the symphony hall. It is IN me. I have no escape from it except that which I create through mindfulness, laughter, and faith. Yes, with clarinets I can fall asleep. Also with flutes. But if a trumpet is playing, how, answer me that, how could I fall asleep? Then in the morning, I have just a few notes off the xylophone or something or a very light brush of a cymbal. Anyway, I am sure I'm not the first to denote this metaphor but, in case any of you wonder how we describe pain so differently, it is because it IS so different. The Canon in D Minor, my favorite work ever, does not sound or feel like John Denver's Annie's Song and that does not feel or sound like something by Ozzy Osborne.
So, my second thing is that I have an issue I don't understand which is different about me from some others in my similar situation. I gladly and willingly walk with a cane. I almost always use a quad cane now instead of just the single. I bought one the day I woke up with these symptoms and it has been part of my life since. (Yes, there was once a remission at which time it was unnecessary.) Also, I own 2 wheelchairs. One lives in my house, one lives in our car. Now I don't think of myself as having a fear of falling because I believe that these measures are the practical and prudent actions I can take to protect myself. So, I move about at my pace, carefully and anybody who is bothered by my slowness should say a prayer of thanksgiving that they can walk without any pain. But, many friends I have, do not use a cane. I don't understand this. I'm unsure if the condition is indeed affecting me in a more severe way than in others I know. One thing medical science does know for sure about fibro is that no two of us are alike. I am disabled by it and have been since its sudden onset on 3/15/05.Its possible that it may be vanity or stubbornness on their part. Also, I have done much volunteer work in nursing homes and I know the truth is that generally, if people who cannot be very active fall and break a large bone or joint, they do get sent to a rehab/nursing home, if they can't be cared for in their own house. Sometimes that is the first step in a long line of steps that keeps them in that nursing home for the remainder of their days. They can be bleak places. I want to remain as independent as I can possibly be for as long as I can be. And sometimes it breaks my heart that I am dependent. It is just grievous to need somebody else to do a small household activity for me. But, also, it is what it is. So, someday, I may need to face that kind of situation. I want to have any stubbornness or vanity well behind me and get on with the business of living each day happily. Further, why would I risk twisting an ankle or tearing a knee ligament and letting the trumpets play more and louder. Foolishness, I say.
Grateful today for blogging right before lunch which includes: This house, which is warm with gas, and comfortable with furniture. It's feeling of safety from the alarm and the dog. Clarity of my mind since, right now, only the piccolo in my fingers has a part. The food I'm about to go choose for my lunch today and what I will take out for dinner tonight. The bathtub I can fill with hot water and the soaps and shampoos of my choosing for use on my skin. Every single bit of it. Pure gratitude. And for my faith which never wavers. And my friends and family who buoy me in every storm.
Thursday, January 1, 2015
And the dial goes up
I know it may seem like I only write to you when things are quite bad and I'm struggling. I hope that's not entirely true but, it is today.
There I was, just skating along the sweet frozen pond of life. Sure, carrying my share of obstacles, but still moving forward. So, at 1 pm today when I laid down for my nap, I missed the memo which reads "Brick wall installation during nap time. You will hit it doing about 80 on a bicycle, old school style, no helmet, no padding". I don't know what I might have done if I had had that heads up but, the surprise explosion inside me is, well, I guess just crap. Before nap time, pain level, maybe 4. After nap, and in fact upon waking, pain level, 11. Now that's a LARGE margin.
I have been trying to take good care of myself. I am newly on a medicine called Depakote which is an anti-seizure med but is frequently used for migraine prevention. I can already tell a big difference in the frequency of my headaches. The doctor I trust the most on my team prescribed it so, I go into it with high hopes.
I feel encouraged that I managed a long holiday trip of travel without undue stress. Yes, super painful. No, I didn't want to die or wish I had stayed home. At the end of the visit, I would not have changed much if I could have. Visits like those, sometimes I don't get to have a real conversation with an adult because it seems to become all about the kids. And I do very badly want to grow a relationship with my nieces and nephew but, I'm not sure my brother and I spoke. And I don't understand why.
So, positives. I stumbled upon some fantastic bracelets which are Hindu based. I bought them from my friend, hoping to like them but not expecting what a world of difference they would make for me. They are handmade out of organic fibers but, they have 8 tiny bells worked into the weave. It is meant to bring us back to the present moment, being mindful not to live in the past or future. I have tried wearing it on my dominant and my non-dominant hand and my dominant hand has the best effect. The bracelets are called Blessing of Bells. And it does create the mindfulness in me that I seek. I have been actually truly considering getting a tattoo on my arm or hand of a word or a phrase or something to help me be mindful and I even talked with Tim about this. He said he thought me getting a tattoo at all might give me a heart attack. I don't have any, and I don't necessarily want one but, I do want to be reminded of the key pieces of truth in my own life. Reading a tattoo is one way, but, so is hearing a bell every time your hand and arm move. I just love them.
The holiday season sort of snuck by under the radar this year. I did not decorate. Every gift I did give with one exception was acquired online. And just today, I finally got some of my cards out.
The other human half of my household has the "ickies", started in his head, went to his chest, several days now. No fever. Just sort of waiting it out. But, regardless of how careful I am, I think this brick wall I hit is a combo pkg of the start of the "ickies" and this cold wet weather finally getting in my bones.
Grateful today that my neighbor is willing and able to run to the grocery store for us with a small list. Tim is in no shape to be out, and it would only multiply my misery. Thank you for Steven, Lord. And thank you for the humility you provide that I could ask for help.
Have happy days!
There I was, just skating along the sweet frozen pond of life. Sure, carrying my share of obstacles, but still moving forward. So, at 1 pm today when I laid down for my nap, I missed the memo which reads "Brick wall installation during nap time. You will hit it doing about 80 on a bicycle, old school style, no helmet, no padding". I don't know what I might have done if I had had that heads up but, the surprise explosion inside me is, well, I guess just crap. Before nap time, pain level, maybe 4. After nap, and in fact upon waking, pain level, 11. Now that's a LARGE margin.
I have been trying to take good care of myself. I am newly on a medicine called Depakote which is an anti-seizure med but is frequently used for migraine prevention. I can already tell a big difference in the frequency of my headaches. The doctor I trust the most on my team prescribed it so, I go into it with high hopes.
I feel encouraged that I managed a long holiday trip of travel without undue stress. Yes, super painful. No, I didn't want to die or wish I had stayed home. At the end of the visit, I would not have changed much if I could have. Visits like those, sometimes I don't get to have a real conversation with an adult because it seems to become all about the kids. And I do very badly want to grow a relationship with my nieces and nephew but, I'm not sure my brother and I spoke. And I don't understand why.
So, positives. I stumbled upon some fantastic bracelets which are Hindu based. I bought them from my friend, hoping to like them but not expecting what a world of difference they would make for me. They are handmade out of organic fibers but, they have 8 tiny bells worked into the weave. It is meant to bring us back to the present moment, being mindful not to live in the past or future. I have tried wearing it on my dominant and my non-dominant hand and my dominant hand has the best effect. The bracelets are called Blessing of Bells. And it does create the mindfulness in me that I seek. I have been actually truly considering getting a tattoo on my arm or hand of a word or a phrase or something to help me be mindful and I even talked with Tim about this. He said he thought me getting a tattoo at all might give me a heart attack. I don't have any, and I don't necessarily want one but, I do want to be reminded of the key pieces of truth in my own life. Reading a tattoo is one way, but, so is hearing a bell every time your hand and arm move. I just love them.
The holiday season sort of snuck by under the radar this year. I did not decorate. Every gift I did give with one exception was acquired online. And just today, I finally got some of my cards out.
The other human half of my household has the "ickies", started in his head, went to his chest, several days now. No fever. Just sort of waiting it out. But, regardless of how careful I am, I think this brick wall I hit is a combo pkg of the start of the "ickies" and this cold wet weather finally getting in my bones.
Grateful today that my neighbor is willing and able to run to the grocery store for us with a small list. Tim is in no shape to be out, and it would only multiply my misery. Thank you for Steven, Lord. And thank you for the humility you provide that I could ask for help.
Have happy days!
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