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!
Friday, December 12, 2014
Hanging in there
I haven't written for quite a while, for my standards anyway, and I miss it. It is very true for me that as soon as I get the' words out, my soul is lighter.
I found out yesterday from my GYN doc, possibly the best and sweetest on this planet, that the dizziness I suffered/suffer can not be related to hormones. Also, she informed me that she will not let me increase any hormone I'm on nor add any. The risk of stroke skyrockets. She told me to call her next week after I see my NEURO, but that she thinks it sounds like I need to see an ENT doc. So, at least I know now that my episodes are unrelated to the perimenopause, any timing was coincidental.
I can feel myself struggling lately. And further, I know I'm not taking proper care of it, of myself. I know why. It will be and is so unpleasant and messy and sad. So I continue to listen to music and books and fill my mind with other stories of other people. I don't know if its the holiday season making me feel down again or not but, I'm even having those wretched nightmares again. The ones where my beloved family member stalks me trying to murder me. Sometimes succeeds. I tell myself, oh I really love hearing the Christmas music all day. And, Oh, I'm almost at the end of this audiobook and I've just gotta know if...blank blankety blank ... happens. Untrue. All of it. Well, true to the degree that I do love those things but, right now they are my crutches. I am struggling, using them to keep my mind occupied. Even though I understand this to be the case, I am having trouble doing the correct self-care thing and turning everything off and just being with myself. I know it will be good for me. I'm scared of it. It will suck. I'm not done hating what has happened to my life. And, even though sometimes I can do it fine, I don't want to face the jealousy I feel when I look at most healthy folks. So, it has been said that admitting the problem is the first step. Hello. I'm Marie, and I'm not happy. Not actually ingesting any chemical to help me feel happy or numb but, am doing other behaviors to prevent me from facing it head on. There. One step taken. That is all I can do at THIS time.
I have a migraine more often than I don't. I'm sure that is adding to the sadness I feel. I gotta say, living with them, and so often, is just awful. In my imagination, I can turn the migraine into a pill and send it to folks who I deem deserve it like drug dealers, human traffickers, rapists, etc. They should live like that, in pain as punishment for what they do. Not me. Yes. I am the judge in my imagination.
I want to enjoy the season but, it feels especially difficult this year. Probably because of a combo of reasons. I dearly miss my best friend. There are no Christmas things in our home because I haven't used the energy to do it, and I justify this by knowing that we will be gone from home for a week soon and will see plenty when we travel. I am living a sort of half life with these headaches. Oh, and I'm in pain, don't forget the pain. Also, not doing any exercising. Such a big combo. Who orders that kind of combo meal? Crazy folks, that's who.
Well, I am thankful that I have the insight to recognize all of the above. Proof my soul has not gone to the dark side. Cleansing and peace are within reach. I just have to muster the courage to reach. And banish the fear of falling. Thankful that I am protected from the elements, fed, and loved. And that sometimes, the migraine medicine does work a bit.
Have happy, happy days.
I found out yesterday from my GYN doc, possibly the best and sweetest on this planet, that the dizziness I suffered/suffer can not be related to hormones. Also, she informed me that she will not let me increase any hormone I'm on nor add any. The risk of stroke skyrockets. She told me to call her next week after I see my NEURO, but that she thinks it sounds like I need to see an ENT doc. So, at least I know now that my episodes are unrelated to the perimenopause, any timing was coincidental.
I can feel myself struggling lately. And further, I know I'm not taking proper care of it, of myself. I know why. It will be and is so unpleasant and messy and sad. So I continue to listen to music and books and fill my mind with other stories of other people. I don't know if its the holiday season making me feel down again or not but, I'm even having those wretched nightmares again. The ones where my beloved family member stalks me trying to murder me. Sometimes succeeds. I tell myself, oh I really love hearing the Christmas music all day. And, Oh, I'm almost at the end of this audiobook and I've just gotta know if...blank blankety blank ... happens. Untrue. All of it. Well, true to the degree that I do love those things but, right now they are my crutches. I am struggling, using them to keep my mind occupied. Even though I understand this to be the case, I am having trouble doing the correct self-care thing and turning everything off and just being with myself. I know it will be good for me. I'm scared of it. It will suck. I'm not done hating what has happened to my life. And, even though sometimes I can do it fine, I don't want to face the jealousy I feel when I look at most healthy folks. So, it has been said that admitting the problem is the first step. Hello. I'm Marie, and I'm not happy. Not actually ingesting any chemical to help me feel happy or numb but, am doing other behaviors to prevent me from facing it head on. There. One step taken. That is all I can do at THIS time.
I have a migraine more often than I don't. I'm sure that is adding to the sadness I feel. I gotta say, living with them, and so often, is just awful. In my imagination, I can turn the migraine into a pill and send it to folks who I deem deserve it like drug dealers, human traffickers, rapists, etc. They should live like that, in pain as punishment for what they do. Not me. Yes. I am the judge in my imagination.
I want to enjoy the season but, it feels especially difficult this year. Probably because of a combo of reasons. I dearly miss my best friend. There are no Christmas things in our home because I haven't used the energy to do it, and I justify this by knowing that we will be gone from home for a week soon and will see plenty when we travel. I am living a sort of half life with these headaches. Oh, and I'm in pain, don't forget the pain. Also, not doing any exercising. Such a big combo. Who orders that kind of combo meal? Crazy folks, that's who.
Well, I am thankful that I have the insight to recognize all of the above. Proof my soul has not gone to the dark side. Cleansing and peace are within reach. I just have to muster the courage to reach. And banish the fear of falling. Thankful that I am protected from the elements, fed, and loved. And that sometimes, the migraine medicine does work a bit.
Have happy, happy days.
Tuesday, November 18, 2014
I was ahead of myself
So yesterday began feeling my new normal again. And I was feelin' fine with it. In fact it had been sitting here writing to a friend on PatientsLikeMe and got up to do one more small chore before lunch, then nap. Not doing too much or too quickly, I know how to play this game. I got my bagful of red peppers out of my fridge drawer (they were on sale so I loaded up) and was preparing to wash and then roast them for culturing later. Put the bag on the counter and the room swam. And swirled, and swished. I was holding onto the counter by then. Vision went black for the count of 2. I sort of melted to the kitchen floor, thanks to holding the counter. Didn't land hard or weird or hit my head. Too weak to get up, and even down there still crazy dizzy. Butt schooched across the kitchen to my living room to my wheelchair. Climbed in in, instantly nauseated. Back to the kitchen for a ginormous bowl in case of sickness. Then to the couch. Had presence of mind to grab cell phone off the breakfast table and take to the couch. World still spinning, even with eyes closed. Was not headache based. Constant dizziness and nausea and profound weakness. Did not wait to call for help. Left messages with both neighbors. Decided if no reply by certain time, would call Tim at work. Neither neighbor was home but, one came over about 40 min later and cared for me. Breathing was quite shallow, but I think that's because it was scary. She brought water, cold cloth, and got me into bed. Brought me medicine and heating pads and she called Tim to let him know to check me.
Many times in these years I have wanted, longed for someone to take care of me that way but, yesterday was the first time I could not physically manage alone.
I did sleep, and world was still spinning when I moved my head upon waking. We have walkie-talkies for geocaching and used them for "please bring me some food" requests. I did not spend any time out of bed.
No more dizziness but, very weak. Moving around quite like a tortoise. Already medicated for headache. 9am now. Have my therapist appt in a couple hours. Glad she understands cavewoman language.
Tim thinks maybe due to hypostatic blood pressure, when blood pressure plummets from moving head up and down too rapidly. The hours and hours of dizziness bother me. Not worried or afraid but, its new.
More grateful than I can say that God put someone close by in my world to physically come to me. It is truly scary to be alone and need help. Not something a 45 yr old expects to face.
Tim just called to check and hearing me speak asked me to cancel my appt and please not leave the house. That's how bad I sound. lol
So grateful for those who love me.
Prayers of thanksgiving for sweet Vanessa who saw me at my worst and neediest, a true friend.
Many times in these years I have wanted, longed for someone to take care of me that way but, yesterday was the first time I could not physically manage alone.
I did sleep, and world was still spinning when I moved my head upon waking. We have walkie-talkies for geocaching and used them for "please bring me some food" requests. I did not spend any time out of bed.
No more dizziness but, very weak. Moving around quite like a tortoise. Already medicated for headache. 9am now. Have my therapist appt in a couple hours. Glad she understands cavewoman language.
Tim thinks maybe due to hypostatic blood pressure, when blood pressure plummets from moving head up and down too rapidly. The hours and hours of dizziness bother me. Not worried or afraid but, its new.
More grateful than I can say that God put someone close by in my world to physically come to me. It is truly scary to be alone and need help. Not something a 45 yr old expects to face.
Tim just called to check and hearing me speak asked me to cancel my appt and please not leave the house. That's how bad I sound. lol
So grateful for those who love me.
Prayers of thanksgiving for sweet Vanessa who saw me at my worst and neediest, a true friend.
Monday, November 17, 2014
This is more like it
So, just three days ago I was writing about being on guard for the other shoe to drop. It did. And here is my epiphany. I am fully at a state where this level of pain is what feels normal to me. I have lived with this long enough and survived well enough that I am even more at ease when I have some symptoms as opposed to none. When there are none, I'm on guard, which is stressful. I actively prevent stress where I can so, having no symptoms is counterproductive. When there are some, I successfully cope. When they get worse, I respond successfully to that as well. And I have lived through many a time when I was in pain such that I thought I would die. And I haven't ever died. So, this level of medium pain is normal for me. It is my usual self now. I have copied this from a FaceBook page and am pasting it here for information sake.
I do understand, for those who are purists, this is incredibly unscientific. But, unfortunately, there are so few ways to relate pain since it is so subjective. What I was feeling for some weeks was probably about a 2-5 level. Yesterday though, I got to about 9. Today, still being 9 am, I am already at 8. But, delightfully enough, I do not feel discouraged, dismayed, hindered, or even down. I just feel normal. I feel empowered with the knowledge that I know how to live with this. I feel confident that I control as much as I can and that my strength of faith will carry me the rest of the way. I feel fine. Not my nerve endings, mind you. My heart and my mind. My nerve endings are mewling and whining like kittens and puppies do when they are especially hungry or lonely or scared. When they start howling and yowling (levels 12+) as if they are in pain, I will still know my faith, although my personal power will be diminished because it affects my thinking so much. I might, because I have before, forget that I have some power. I probably will be confused about, well, everything. But, my faith will remain. And that, I can have absolute confidence in. That, I would get tattooed on me if ever I were to do have one done. The word FAITH. About that, I am never, ever confused. That is why, no, not why but how I survive.
Feeling thankful that I am using my coping muscles successfully today. Enjoying remembering the days recently when I didn't need them but, grateful that I can rely on them to work for me now. Thankful for my faith.
Have happy, happy days!
Friday, November 14, 2014
Grateful, but unsure
I am feeling pretty well lately. For the last few weeks, anyway. And I am grateful. Deeply grateful. However, with this gratitude is sort of a confusing mix of "when will the other shoe drop" and general "I really don't have any idea what's going on". I do realize that those two confused feelings are not helpful and indeed can cause stress if I focus on them so, I am writing here to avoid focusing. Historically, in very cold weather, I hurt. A lot. I do remember last winter and my struggle through it but, the rest of the info which I do not remember is recorded in various journals. Cold is very painful for me. I know this to be a fact. Well, this week the temperatures have been at or below freezing most days, climbing only to the high 30's. Dry, but cold. And I am not needing my wheelchair. Some of the time, I am not even needing my cane. This is unheard of. Frankly, it makes me nervous, if I allow it, because I wonder when the crap-storm will hit. Will I end up crawling to my chair suddenly one day, since I don't have my cane? This is the benefit of being in my home full of furniture, hopefully, that won't happen.
The single only difference in my behavior this winter is that I am staying indoors. I have let go of the guilt of walking the dog and I don't do it. If Tim walks him before work, he gets a walk, if not, he doesn't. I know this isn't great or ideal for him but, in my journey for some relief for myself, this is the pit stop right now. So, maybe since I am keeping myself very, very climate controlled, that is making a difference. I don't know. I did go out to an appointment one morning in the cold but, I didn't suffer during or after. My pain levels are lower than normal for me. Fatigue is the same but, headaches are less frequent. I have become disciplined about my naps again and take a med before nap time and before bedtime to help with falling asleep. Also, I am diligently including kefir and cultured veggies in my daily diet and have been for 9 months. Those are the only things I'm doing differently than last year, this same time.
So, in my natural human yearning to understand what I am going through, I have no idea. I long for an answer to the question about why I feel better now. My pain does not go above a 4 these days, which is remarkable and a blessing. Yet, I cannot help but be on guard for when a flare will hit and it will skyrocket to an 8. It isn't healthy to investigate that too far because, I can easily get into self-blame. If I do something that changes it, anything that changes it, and I'm able to pinpoint that thing, then the pain is my fault. So, really, it is hurtful to try to identify the reason, and especially hurtful to micromanage my movements so carefully. I need to just live. Let myself live. But, it feels prudent to be on guard. For example, it would be foolish to leave my home without a wheelchair now-days. I have learned from those kinds of mistakes, no matter how low my pain is inside this house.
Thankful for relief from pain. Praying for the ability to just enjoy each moment without worry about how I might feel in the next. Wanting to wallow in the wellness. Well, the relative wellness. I still cannot dance through and entire song in my living room. Lord, let me stay aware but not tightly guarded and not micromanaging all my human behaviors. Let me just enjoy the relief and turn away from distress at the change I think is coming.
Have happy days!
The single only difference in my behavior this winter is that I am staying indoors. I have let go of the guilt of walking the dog and I don't do it. If Tim walks him before work, he gets a walk, if not, he doesn't. I know this isn't great or ideal for him but, in my journey for some relief for myself, this is the pit stop right now. So, maybe since I am keeping myself very, very climate controlled, that is making a difference. I don't know. I did go out to an appointment one morning in the cold but, I didn't suffer during or after. My pain levels are lower than normal for me. Fatigue is the same but, headaches are less frequent. I have become disciplined about my naps again and take a med before nap time and before bedtime to help with falling asleep. Also, I am diligently including kefir and cultured veggies in my daily diet and have been for 9 months. Those are the only things I'm doing differently than last year, this same time.
So, in my natural human yearning to understand what I am going through, I have no idea. I long for an answer to the question about why I feel better now. My pain does not go above a 4 these days, which is remarkable and a blessing. Yet, I cannot help but be on guard for when a flare will hit and it will skyrocket to an 8. It isn't healthy to investigate that too far because, I can easily get into self-blame. If I do something that changes it, anything that changes it, and I'm able to pinpoint that thing, then the pain is my fault. So, really, it is hurtful to try to identify the reason, and especially hurtful to micromanage my movements so carefully. I need to just live. Let myself live. But, it feels prudent to be on guard. For example, it would be foolish to leave my home without a wheelchair now-days. I have learned from those kinds of mistakes, no matter how low my pain is inside this house.
Thankful for relief from pain. Praying for the ability to just enjoy each moment without worry about how I might feel in the next. Wanting to wallow in the wellness. Well, the relative wellness. I still cannot dance through and entire song in my living room. Lord, let me stay aware but not tightly guarded and not micromanaging all my human behaviors. Let me just enjoy the relief and turn away from distress at the change I think is coming.
Have happy days!
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