I really believe that sharing is caring, but the thought was brought back into my mind this morning during a Tourette's fit. They're usually directly linked to my stress level, which, with various anxiety disorders means it varies, for no reason and with no warning. Though it is usually correlated to my actual stress level. It usually goes like this:
Stress level:
1 - I don't know yet haha but pacing, definitely pacing... I never stop pacing
2 - The occasional twitch of the shoulders and straightening of clothing (the clothing thing always exists, like having clean hands and such)
3 -
4 -
5 - 3 to 5 range from stuttering, neck craining, hand twitches, foot tapping, guttural noises and clicks and the like. I usually sing during these times in order to focus on what I'm doing. In times like these I feel blessed I learned so many Earth based Pagan songs. They help focus my mind on positive things.
6 -
7 -
8 - High stress times I stutter badly and it always accompanies neck craining: sometimes to the point of such pain that I cry out. The hand body twitches become more exaggerated and the foot tapping becomes leg spasms and jerks. Yes, I admit here and now that I have spasmed into the Thriller dance on one occasion. On high pain days from the fibro, which I'll get to later, the spasms are in my back and they can take me down in an instant in complete agony.
9 -
10 - These days are all of the above with fibro nerve flashes which leave me utterly nonfunctional.
My wife and my kids know all of this because they've lived it, the poor things, as it's come about. I wasn't always this way. The onset of Fibromyalgia exacerbated what my Neurologist called "undiagnosed childhood Tourette's syndrome" which made sense as I've been a finger drummer for as long as I can remember. To anyone on the outside it may seem odd and I know it makes situations uncomfortable so as I shared with my immediate family, I share with you my family at large.
Allow me to digress; I shared all of this in order to set the frame work for the sharing of my walk through Fibromyalgia. Also understand that I have arthritis and my knees are bone on bone, and I have some band disorder my Rheumatologist explained but I don't understand which means my hips ache and pop out of socket frequently. So knowing all of this I'll explain my Fibromyalgia. I say my because it's a host of disorders which plague different people differently. For instance it heightened the already existing Tourettete's and OCD (CDO) and brought new anxieties. My pain level is always parallel to stress changes and changes in barometric pressure. There are eighteen nerve points recognized as very sensitive with fibro and you can have any number of them active. I have all eighteen points active at varying levels of sensativity which correlate to changes in stress, movement, overall health, mental state (which is a real Bugger) and others. They can also just heighten for no reason. Mine are as follows:
1 - My back (4 lower back and 2 upper back at the base of my neck) and my right knee are sensitive though I'm rarely at this pain level with a cognitive mind. Mild headache. I creak like the rigging on an old sailing ship. Extreme discomfort as though I just can't get comfortable.
2 - Back, knees, headache at the base of my neck.
3 -
4 -
5 - Again from 3 to 5: Back (all points from this point forward), knees, elbows, ankles, feet (at the soles), hands, headache complete head mild migraine symptoms, clouded thinking, IBS, lethargy, loss of appetite, muscle spasms in my back and sometimes in my leg, The leg ones I walk out because I pace, the back ones are all day long twitches. If I sit down for too long they lock up and cause the points in my back to hit a 10 in pain. I have sat through one full movie with my family in four years.
6 -
7 -
8 - You know the drill: Extreme lethargy I'd liken to my worst bout of the flu (when I had pneumonia) extreme body and joint pain (my hands are swollen clubs), my knees feel like they're filled with broken glass, the foot pain is like a hot coal on the pad while the foot remains extremely cold with swollen joints, migraine headache, clouded thinking, grumpy, Anxiety bouts with shrieks at loud noises and flinches at sudden movements, IBS from the very bowels of hell,
9 -
10 - They blur into one and it's all of the above with inescapable agony that writhing in the fetal position won't comfort. Nothing helps; there is no place dark enough, soft enough, warm enough, cool enough... if I could be suspended in air I couldn't find comfort and I feel like I know how the Earth must feel moments before magma becomes lava.
So I tell my family and close friends what my pain level is at. I do so because I have no sores, no open wounds which are dressed, no outward signs really other than my permanently dark eyes to alert anyone that I am sick. I am sick.
I am sick.
It has taken me so long to simply admit that. I have fears of hypochondria so I am very stubborn about being sick. I have been sick for as long as I can remember. I have grown a strong dislike of doctors and western medicine in general. I has taken me a long time to become medicated again though my life is MUCH better being so. I was told at my last doctors visit that I am maxed out on Lyrica and Cymbalta; lovely. I have to fight what I assume (yes I assume) is the doctors view that I'm just after some pain medicine like percocet or something. I don't want that. I really dislike the feeling of those pain meds. I don't drink to the point of feeling "off" and I don't like that no matter what I take, prescription pain meds, I feel that way. I am a medical marijuana patient. I have been for two years. The amount of pain relief is directly in my hands. The type of relief is under my control as well. By using different types I directly address what I hurting or wrong. I can remain functional and believe me it has saved my marriage because I'm no peach to live with. My wife is a Saint for putting up with me, truly.
I wake up groggy and I go to bed wide awake. I pace all day so that when I go to bed I'm exhausted and I'll sleep as still as possible because I don't want to ruin Rose's sleep. I still sleep restlessly and the points on my back have caused us to cuddle much less. I really miss that physical contact. To explain my back; have you ever had a broken or bad tooth? Where the root was exposed? Where just the slightest breath inward was felt and it could surge to a burning pain at the lightest touch? It's like my lower back is a mouth full of broken teeth. The Lyrica and Cymbalta keep the pain at about a high discomfort level. My family know where to hug me safely, others I keep the pain within; it's worth it for the physical contact and exchange of love. After the hug, which usually ends with a pat on the back, I smile and excuse myself to go walk off the pain. I will not miss out on a hug, and if you're reading this and thinking of hugging me less, even one hug, please please don't. Please don't withhold, I am a hugger.
I meditate in the morning to offset the lost sleep. I try to meditate a couple hours a day between sitting Shinay and walking Shinay. I open my shrine in the morning which consists of chants which set my intention in the right direction, offerings of saffron water and candles and incense when I have it. I center myself through this process. I get the coffee going and get my family off for their day. I ask them every day "Did you get enough sleep? Did you get enough to eat? Are you going to have a good day?" We play fun music. My youngest son likes Stevie Wonder's "Sir Duke" especially and I love the way he sings it in the morning. After they're off I will come home and medicate and walk out the cramps and spasms. About Noon I'll be able to get out and about to run any errands. I recently got a handicapped parking placard. I thought I wouldn't use it often because as we parked in the past I had thought about getting one and assessed if I would "need" to use it. That assessment was flawed though because it was from the perspective in which parking there wasn't actually an option. I use it a lot. I walk with a cane for a few reasons: my knees; they won't do a knee replacement until I'm in my 60's with the lack of insurance I have. So I'm using what I have wisely and walking with a cane. It's also for my back. My right hip is what I would describe as "soggy" it doesn't hold my weight during a stride. So, the cane helps a lot even though I really dislike it. My skin is soft and thin now. When I look down I don't see my Dad's hands, I see my Grandpa Hope's hands. That's ok by me, he was a great man, but it's a little early. I'm not yet 40. I digress yet again (fibro fog) I'll go get the kids from school around 2:30 and leave again around 5:45 to get Rose from work. We'll get dinner figured out and I'll cook or help cook depending. I'll get Rose off to bed, then the kids, and I'll pace out all the pain and anxiety from the day (even though I do it throughout the day) and exhaust myself around midnight and fall asleep.
That "day" will fluctuate depending on the factors I listed and I have no retreat from my day. I cannot fail my family. I feel horrible as I am no longer the provider for me family, while at the same time I have enormous pride for my wife and how she's blossomed under this. As my body crumples up on me I struggle with depression (fibo add-on), I am unemployed and most likely unemployable, I can't work hard around the house... hell I barely keep house. I manage to taxi my family and remain an emotional support. It's all I have and I give it all.
I'm sharing all of this because I am sick, but I am a human being. I believe we need to open the dark corners, deal with them with the strength of our family. We need to dispel the thought that we should somehow be ashamed of our bodies, of who we are. We desperately need a coming together. I share because it is caring, caring that maybe this will reach someone who needs it on a day they need it. Gifts are given without thought of reciept, or they should be and I believe your very presence is a gift unto the universe for us all to share so make it the best you can give.
Imagine. Everyone, everywhere being open and giving, understanding and nonjudgmental... We have to be the change folks and this is my humble contribution.
Stress level:
1 - I don't know yet haha but pacing, definitely pacing... I never stop pacing
2 - The occasional twitch of the shoulders and straightening of clothing (the clothing thing always exists, like having clean hands and such)
3 -
4 -
5 - 3 to 5 range from stuttering, neck craining, hand twitches, foot tapping, guttural noises and clicks and the like. I usually sing during these times in order to focus on what I'm doing. In times like these I feel blessed I learned so many Earth based Pagan songs. They help focus my mind on positive things.
6 -
7 -
8 - High stress times I stutter badly and it always accompanies neck craining: sometimes to the point of such pain that I cry out. The hand body twitches become more exaggerated and the foot tapping becomes leg spasms and jerks. Yes, I admit here and now that I have spasmed into the Thriller dance on one occasion. On high pain days from the fibro, which I'll get to later, the spasms are in my back and they can take me down in an instant in complete agony.
9 -
10 - These days are all of the above with fibro nerve flashes which leave me utterly nonfunctional.
My wife and my kids know all of this because they've lived it, the poor things, as it's come about. I wasn't always this way. The onset of Fibromyalgia exacerbated what my Neurologist called "undiagnosed childhood Tourette's syndrome" which made sense as I've been a finger drummer for as long as I can remember. To anyone on the outside it may seem odd and I know it makes situations uncomfortable so as I shared with my immediate family, I share with you my family at large.
Allow me to digress; I shared all of this in order to set the frame work for the sharing of my walk through Fibromyalgia. Also understand that I have arthritis and my knees are bone on bone, and I have some band disorder my Rheumatologist explained but I don't understand which means my hips ache and pop out of socket frequently. So knowing all of this I'll explain my Fibromyalgia. I say my because it's a host of disorders which plague different people differently. For instance it heightened the already existing Tourettete's and OCD (CDO) and brought new anxieties. My pain level is always parallel to stress changes and changes in barometric pressure. There are eighteen nerve points recognized as very sensitive with fibro and you can have any number of them active. I have all eighteen points active at varying levels of sensativity which correlate to changes in stress, movement, overall health, mental state (which is a real Bugger) and others. They can also just heighten for no reason. Mine are as follows:
1 - My back (4 lower back and 2 upper back at the base of my neck) and my right knee are sensitive though I'm rarely at this pain level with a cognitive mind. Mild headache. I creak like the rigging on an old sailing ship. Extreme discomfort as though I just can't get comfortable.
2 - Back, knees, headache at the base of my neck.
3 -
4 -
5 - Again from 3 to 5: Back (all points from this point forward), knees, elbows, ankles, feet (at the soles), hands, headache complete head mild migraine symptoms, clouded thinking, IBS, lethargy, loss of appetite, muscle spasms in my back and sometimes in my leg, The leg ones I walk out because I pace, the back ones are all day long twitches. If I sit down for too long they lock up and cause the points in my back to hit a 10 in pain. I have sat through one full movie with my family in four years.
6 -
7 -
8 - You know the drill: Extreme lethargy I'd liken to my worst bout of the flu (when I had pneumonia) extreme body and joint pain (my hands are swollen clubs), my knees feel like they're filled with broken glass, the foot pain is like a hot coal on the pad while the foot remains extremely cold with swollen joints, migraine headache, clouded thinking, grumpy, Anxiety bouts with shrieks at loud noises and flinches at sudden movements, IBS from the very bowels of hell,
9 -
10 - They blur into one and it's all of the above with inescapable agony that writhing in the fetal position won't comfort. Nothing helps; there is no place dark enough, soft enough, warm enough, cool enough... if I could be suspended in air I couldn't find comfort and I feel like I know how the Earth must feel moments before magma becomes lava.
So I tell my family and close friends what my pain level is at. I do so because I have no sores, no open wounds which are dressed, no outward signs really other than my permanently dark eyes to alert anyone that I am sick. I am sick.
I am sick.
It has taken me so long to simply admit that. I have fears of hypochondria so I am very stubborn about being sick. I have been sick for as long as I can remember. I have grown a strong dislike of doctors and western medicine in general. I has taken me a long time to become medicated again though my life is MUCH better being so. I was told at my last doctors visit that I am maxed out on Lyrica and Cymbalta; lovely. I have to fight what I assume (yes I assume) is the doctors view that I'm just after some pain medicine like percocet or something. I don't want that. I really dislike the feeling of those pain meds. I don't drink to the point of feeling "off" and I don't like that no matter what I take, prescription pain meds, I feel that way. I am a medical marijuana patient. I have been for two years. The amount of pain relief is directly in my hands. The type of relief is under my control as well. By using different types I directly address what I hurting or wrong. I can remain functional and believe me it has saved my marriage because I'm no peach to live with. My wife is a Saint for putting up with me, truly.
I wake up groggy and I go to bed wide awake. I pace all day so that when I go to bed I'm exhausted and I'll sleep as still as possible because I don't want to ruin Rose's sleep. I still sleep restlessly and the points on my back have caused us to cuddle much less. I really miss that physical contact. To explain my back; have you ever had a broken or bad tooth? Where the root was exposed? Where just the slightest breath inward was felt and it could surge to a burning pain at the lightest touch? It's like my lower back is a mouth full of broken teeth. The Lyrica and Cymbalta keep the pain at about a high discomfort level. My family know where to hug me safely, others I keep the pain within; it's worth it for the physical contact and exchange of love. After the hug, which usually ends with a pat on the back, I smile and excuse myself to go walk off the pain. I will not miss out on a hug, and if you're reading this and thinking of hugging me less, even one hug, please please don't. Please don't withhold, I am a hugger.
I meditate in the morning to offset the lost sleep. I try to meditate a couple hours a day between sitting Shinay and walking Shinay. I open my shrine in the morning which consists of chants which set my intention in the right direction, offerings of saffron water and candles and incense when I have it. I center myself through this process. I get the coffee going and get my family off for their day. I ask them every day "Did you get enough sleep? Did you get enough to eat? Are you going to have a good day?" We play fun music. My youngest son likes Stevie Wonder's "Sir Duke" especially and I love the way he sings it in the morning. After they're off I will come home and medicate and walk out the cramps and spasms. About Noon I'll be able to get out and about to run any errands. I recently got a handicapped parking placard. I thought I wouldn't use it often because as we parked in the past I had thought about getting one and assessed if I would "need" to use it. That assessment was flawed though because it was from the perspective in which parking there wasn't actually an option. I use it a lot. I walk with a cane for a few reasons: my knees; they won't do a knee replacement until I'm in my 60's with the lack of insurance I have. So I'm using what I have wisely and walking with a cane. It's also for my back. My right hip is what I would describe as "soggy" it doesn't hold my weight during a stride. So, the cane helps a lot even though I really dislike it. My skin is soft and thin now. When I look down I don't see my Dad's hands, I see my Grandpa Hope's hands. That's ok by me, he was a great man, but it's a little early. I'm not yet 40. I digress yet again (fibro fog) I'll go get the kids from school around 2:30 and leave again around 5:45 to get Rose from work. We'll get dinner figured out and I'll cook or help cook depending. I'll get Rose off to bed, then the kids, and I'll pace out all the pain and anxiety from the day (even though I do it throughout the day) and exhaust myself around midnight and fall asleep.
That "day" will fluctuate depending on the factors I listed and I have no retreat from my day. I cannot fail my family. I feel horrible as I am no longer the provider for me family, while at the same time I have enormous pride for my wife and how she's blossomed under this. As my body crumples up on me I struggle with depression (fibo add-on), I am unemployed and most likely unemployable, I can't work hard around the house... hell I barely keep house. I manage to taxi my family and remain an emotional support. It's all I have and I give it all.
I'm sharing all of this because I am sick, but I am a human being. I believe we need to open the dark corners, deal with them with the strength of our family. We need to dispel the thought that we should somehow be ashamed of our bodies, of who we are. We desperately need a coming together. I share because it is caring, caring that maybe this will reach someone who needs it on a day they need it. Gifts are given without thought of reciept, or they should be and I believe your very presence is a gift unto the universe for us all to share so make it the best you can give.
Imagine. Everyone, everywhere being open and giving, understanding and nonjudgmental... We have to be the change folks and this is my humble contribution.
