In my post last week, I did some comparing and contrasting of sensory defensiveness in people with Fibromyalgia and people on the Autism spectrum.To sum it up, the main similarities are the tendency toward over-sensitivity to light, sound, and touch. The main difference is that those of us with Fibromyalgia acquired it after our neural pathways matured, and our sensory systems had time to organize. We learned how to respond to things, based on experience and social norms, so when we got Fibro, we were able to adapt to it with varying degrees of success..People on the Autism spectrum, on the other hand, grow up with their disorder, and must learn to live in a society that does not share or comprehend their over-sensitivities.They may not be able to communicate their discomfort, or they may not realize that others experience the world differently.
Keep in mind that this is very much an over-simplification of the situation. Everyone is different, not all people on the Autism spectrum have sensory defensiveness, and not all people with sensory defensiveness have Autism. In fact, there is a distinct disorder known as 'sensory processing disorder'.
One of the areas of sensory study that I find most fascinating is 'habituation'. It is related to the word 'habit'. When something is a habit, it is automatic, we don't even think about it. Habituation is similar. When our body is bombarded by the same sensory input over and over, our body stops responding to it, and just ignores it.This is why you don't constantly feel your clothes, or why people who live near the train tracks don't hear the train after awhile.
Imagine what life would be like if we did not have this shut-off valve in our system? We would be constantly bombarded from all directions with sounds, smells, sights, we would feel out clothing, the air, etc. It would be overwhelming. It is believed that this is what life is like for some people with Autism.They are so overwhelmed that they shut down, and don't respond, because they don't know what, of all the input, to respond to.
People with chronic pain can have a version of this, where the pain signals continue bombarding, and the habituation mechanism fails to kick in to shut off awareness. This may be due to the intensity of the pain signal, or in the case of Fibro, the pain signal mechanism itself is faulty.
Stay tuned: my next post will be on some things you can do when your pain signal won't shut off.
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Friday, June 7, 2013
Tuesday, May 28, 2013
Sensory Defensiveness
We experience and interact with our world through our senses. When the system is working properly, your body responds to sensations effectively and efficiently, without conscious effort.You automatically make adjustments to your position if you are in a rocking boat. You can tell how much pressure to use when buttering bread. For some people, this doesn't happen so smoothly. Some people are under responsive to sensory stimuli, others are overly responsive. Most people on the Autism spectrum have sensory processing problems, either under or over, and often a combination. I want to focus on sensory defensiveness, the over sensitivity and over reaction to sensations, which is not just in people with Autism.
I have a new job (I am an occupational therapist) with children in a school. Even though it is the end of the school year, I do have one child I am going to see for the last couple of weeks of the school year. He has some sensory defensiveness, and I have been reading up on it, to refresh my memory. I have made some interesting observations, and had some Aha moments.
As I sat here reading, my legs were bothering me. Besides the muscle tenderness and tendinitis issues, my skin was feeling irritated. As I was reading about sensory defensiveness, MY sensory defensiveness was reminding me that it was there. In Fibromyalgia, pain signals, which normally function to let us know something is wrong, get greatly magnified, as well as triggered for no apparent reason. People with Fibromyalgia have pain where there is no trauma; even the caress of a loved one may cause pain. My cat, sleeping against my leg sometimes causes pain. My small netbook computer hurts my legs when it sits in my lap without a pillow under it. Certain fabrics irritate, tags in clothing hurt.Wrinkles in the bed sheets, both under me and on top of me, cause discomfort.
Besides tactile issues, people with Fibro tend to be overly sensitive to other sensations: bright lights, loud noises, smells. I never thought about this similarity before between the sensitivities that people with Fibromyalgia have, and people on the Autism spectrum.I found the reading fascinating, as I related it to my experiences, comparing and contrasting. One big difference is that our bodies had a chance to learn to process and integrate the sensory signals in a "normal" way before the malfunction occurred. People who were born with or were very young when their sensory issues started have never known anything different, and may not even know that others function differently.
More on this at a later time.
I have a new job (I am an occupational therapist) with children in a school. Even though it is the end of the school year, I do have one child I am going to see for the last couple of weeks of the school year. He has some sensory defensiveness, and I have been reading up on it, to refresh my memory. I have made some interesting observations, and had some Aha moments.
As I sat here reading, my legs were bothering me. Besides the muscle tenderness and tendinitis issues, my skin was feeling irritated. As I was reading about sensory defensiveness, MY sensory defensiveness was reminding me that it was there. In Fibromyalgia, pain signals, which normally function to let us know something is wrong, get greatly magnified, as well as triggered for no apparent reason. People with Fibromyalgia have pain where there is no trauma; even the caress of a loved one may cause pain. My cat, sleeping against my leg sometimes causes pain. My small netbook computer hurts my legs when it sits in my lap without a pillow under it. Certain fabrics irritate, tags in clothing hurt.Wrinkles in the bed sheets, both under me and on top of me, cause discomfort.
Besides tactile issues, people with Fibro tend to be overly sensitive to other sensations: bright lights, loud noises, smells. I never thought about this similarity before between the sensitivities that people with Fibromyalgia have, and people on the Autism spectrum.I found the reading fascinating, as I related it to my experiences, comparing and contrasting. One big difference is that our bodies had a chance to learn to process and integrate the sensory signals in a "normal" way before the malfunction occurred. People who were born with or were very young when their sensory issues started have never known anything different, and may not even know that others function differently.
More on this at a later time.
Thursday, May 16, 2013
Sjogren's Syndrome is Common?
I sometimes mention Sjogren's syndrome, the main autoimmune syndrome I have. Sjogren's affects the moisture producing glands in the body, the classic symptoms are dry eyes and dry mouth. For some people, that is all they have, others may have a variety of other symptoms, but not have dry eyes or mouth at all. Some people are able to continue on with all their roles in life, others become completely disabled. There have been estimates that between 1-3% of the population of the US is affected by Sjogren's. That means that this disease, which so few people have heard of, and until recently was thought to be rare, is actually pretty common.
That means that there are many, many, MANY people out there who have Sjogren's syndrome, and don't know it. For some, it is because their symptoms are mild, or they blend in with something else they have, or they figure what they feel is just a normal part of aging. Then there are all the others. The ones who know there is something wrong, and are searching for a diagnosis. On average, it takes 5-7 years for people with Sjogren's to get an accurate diagnosis. People are often told they have lupus, or rheumatoid arthritis, both of which have some overlaps with Sjogren's. There is a blood test, but not everyone with Sjogren's tests positive. I could go on and on, but you get the idea.
Unfortunately, treatment can be haphazard, or even inappropriate if you don't have an accurate diagnosis.Also, having a diagnosis is beneficial psychologically, in that you feel 'vindicated', that you didn't imagine the symptoms, they weren't all in your head.
On June 1st, our Northeast Ohio Sjogren's Syndrome Support Group is having a Walkabout- a short walk, since many of us, (including me, these days) are limited in how much we can walk.We are collecting money for the Sjogren's Syndrome Foundation, which will go to sponsor research grants for researchers studying Sjogren's syndrome, looking to understand it better, and for better ways to diagnose and treat it. The funding will also go to educating the public as well as the medical community about Sjogren's, so people will be diagnosed more quickly in the future.
Please go to my Firstgiving page and make a donation to help us with our mission. My tear ducts and salivary glands thank you, as does the rest of me, and all the other people affected by Sjogren's.
Friday, May 10, 2013
Gardening Makes Scents
May is gardening season here in Northeast Ohio. I always start out very enthusiastic, but get a bit less enthralled on hot August days when I need to water my plants so they don't dry up (then they would know what it feels like to have Sjogren's Syndrome :~) I have two raised garden areas, about 3' X 18' each. One is perennial flowering plants, the other is veggies and herbs. I decided that this year I wanted to reorganize the veggie/herb garden, and let the flower garden fend for itself (for the most part).
Yesterday I went to my favorite garden center, and browsed, and explored, and came home with 10 plants, twice the number I had planned to buy, but not unexpected. I have written in the past about how I like to drink water with herbs and/or fruit in it, so I was looking for plants that would give me tasty things to put in my water. My all-time favorite, which I buy every year, is lemon verbena. When you crush the leaves, they give off an aroma of lemon peel.(Now does my use of the word 'scents' in the title of this post make 'sense'?)
I planned to buy sweet basil, because I use it a lot in cooking, and I love its almost licorice-y scent. I did buy some, but I also bought cinnamon basil. How could I pass that up, when I love cinnamon so much?
There were so many varieties of mint, it was hard for me to choose: orange mint, chocolate mint, lime candy mint, spearmint, ginger mint (which I already have) and mojito mint, which is the one I ultimately bought. I chose it because I wanted a minty flavor, but mild, the leaves are a pretty crinkly bright green and because I like mojitos. Imagine taking a leaf or two from each of these plants and crushing them in your fingers. Mmmm... That would smell heavenly.
I bought some bee balm on a whim. I like the name, and the picture of the flowers on the label caught my eye. I'm not so sure I will like its tea-like flavor, but we will see. The other plants I bought were two tomato and three strawberry. To round out the garden, I already planted radish and beet seeds, which have sprouted mightily, and asparagus, horseradish, thyme and lavender, all survivors from last year. The horseradish is related to mustard, and is in bloom right now, with one-inch wide bouquets of tiny white sweet smelling flowers. Not what one would expect from such a pungent root. Two opposite scents form one plant.
My garden has lots of things going on in it, like my art. I don't have a lot of any one thing, because I don't need very much of each thing. This way, I get lots of entertainment for my eyes, nose and mouth. My ears will be entertained by hearing the bees sip on the nectar of the bee balm, and of my cat as she sits on her window perch (inside) and purrs as she watches them. My hands are already getting entertained by the feel of the soil, and the tender leaves of spring.
If you don't have time/room/energy/physical ability to have a garden, have a mini one indoors. You can get hanging pots, or pots that sit on your counter. You can get flowering plants, herbs, I've even seen strawberries and tomatoes in small containers. Many plants only need watering once a week or so. Cacti and other succulents may get by with only occasional watering There is a plant out there to match every lifestyle. Having plants really livens up a room, and a soul. Have you had your green today?
Yesterday I went to my favorite garden center, and browsed, and explored, and came home with 10 plants, twice the number I had planned to buy, but not unexpected. I have written in the past about how I like to drink water with herbs and/or fruit in it, so I was looking for plants that would give me tasty things to put in my water. My all-time favorite, which I buy every year, is lemon verbena. When you crush the leaves, they give off an aroma of lemon peel.(Now does my use of the word 'scents' in the title of this post make 'sense'?)
I planned to buy sweet basil, because I use it a lot in cooking, and I love its almost licorice-y scent. I did buy some, but I also bought cinnamon basil. How could I pass that up, when I love cinnamon so much?
There were so many varieties of mint, it was hard for me to choose: orange mint, chocolate mint, lime candy mint, spearmint, ginger mint (which I already have) and mojito mint, which is the one I ultimately bought. I chose it because I wanted a minty flavor, but mild, the leaves are a pretty crinkly bright green and because I like mojitos. Imagine taking a leaf or two from each of these plants and crushing them in your fingers. Mmmm... That would smell heavenly.
I bought some bee balm on a whim. I like the name, and the picture of the flowers on the label caught my eye. I'm not so sure I will like its tea-like flavor, but we will see. The other plants I bought were two tomato and three strawberry. To round out the garden, I already planted radish and beet seeds, which have sprouted mightily, and asparagus, horseradish, thyme and lavender, all survivors from last year. The horseradish is related to mustard, and is in bloom right now, with one-inch wide bouquets of tiny white sweet smelling flowers. Not what one would expect from such a pungent root. Two opposite scents form one plant.
My garden has lots of things going on in it, like my art. I don't have a lot of any one thing, because I don't need very much of each thing. This way, I get lots of entertainment for my eyes, nose and mouth. My ears will be entertained by hearing the bees sip on the nectar of the bee balm, and of my cat as she sits on her window perch (inside) and purrs as she watches them. My hands are already getting entertained by the feel of the soil, and the tender leaves of spring.
If you don't have time/room/energy/physical ability to have a garden, have a mini one indoors. You can get hanging pots, or pots that sit on your counter. You can get flowering plants, herbs, I've even seen strawberries and tomatoes in small containers. Many plants only need watering once a week or so. Cacti and other succulents may get by with only occasional watering There is a plant out there to match every lifestyle. Having plants really livens up a room, and a soul. Have you had your green today?
Thursday, May 2, 2013
Think Outside the Box
This is your chance to think outside the box and have some fun. This activity/exercise is good for getting your creative juices flowing, or a good procrastination activity, but it is also good as a distraction from pain. It is a simple idea, and can be done in infinite variations.
Take a piece of paper (or two or three...) Draw on it four or six or eight squares. It doesn't matter how many or what size. After you do it a time or two, you can decide what feels right to you. I like six squares, in two rows of three (or three rows of two, depending on how you orient your paper). Now- Put on your thinking cap, and think outside the box, literally. What is the box, and what would you find outside it? Draw whatever comes to mind around the first box. Now go on to the second. Try not to be critical of either your ideas or your drawing skills. Any idea is a good one, even if it doesn't seem like it..Imagine looking down at it, straight at it, or up at it.Imagine it different sizes, different colors. Different ideas come to mind.
So, what are some ideas to get you started? It is a house, and there are bushes and flowers around it, maybe a swing-set, (Don't get caught up in the fact that this is an overhead view.) You can even add what you would see on the surface of the box, in this case, the roof, maybe a chimney. It is a shoe box, with a pair of mismatched shoes. It is a toy-box with the toys all over the place...You could also see the squares as buildings in a city, and connect them with streets, sidewalks, cars, people, dogs, etc. Let your imagination wander. Have fun.
Some variations on this are thinking about what would be inside the box instead of outside (this is actually easier, so if you are having trouble thinking outside the box, think inside instead). This could be a toy-box, shoe box, or house, or a deck of cards (draw any one you want), a book, a painting, a candy bar, etc. You could do the same thing with circles, or ovals, or rectangles or triangles, or heptagons.
That brings to mind a game we used to do as kids, a similar idea to this. One person makes a scribble on a piece of paper, the next person has to look at the scribble and find a part that resembles something, and using more crayons, makes it more recognizable. You could also do this by yourself.
Get absorbed in activities such as these, and for many people, their pain fades.The more detailed and absorbed you get, the more the pain will fade. Give it a few tries. It may feel awkward and difficult at first, but it should get easier.
Take a piece of paper (or two or three...) Draw on it four or six or eight squares. It doesn't matter how many or what size. After you do it a time or two, you can decide what feels right to you. I like six squares, in two rows of three (or three rows of two, depending on how you orient your paper). Now- Put on your thinking cap, and think outside the box, literally. What is the box, and what would you find outside it? Draw whatever comes to mind around the first box. Now go on to the second. Try not to be critical of either your ideas or your drawing skills. Any idea is a good one, even if it doesn't seem like it..Imagine looking down at it, straight at it, or up at it.Imagine it different sizes, different colors. Different ideas come to mind.
So, what are some ideas to get you started? It is a house, and there are bushes and flowers around it, maybe a swing-set, (Don't get caught up in the fact that this is an overhead view.) You can even add what you would see on the surface of the box, in this case, the roof, maybe a chimney. It is a shoe box, with a pair of mismatched shoes. It is a toy-box with the toys all over the place...You could also see the squares as buildings in a city, and connect them with streets, sidewalks, cars, people, dogs, etc. Let your imagination wander. Have fun.
Some variations on this are thinking about what would be inside the box instead of outside (this is actually easier, so if you are having trouble thinking outside the box, think inside instead). This could be a toy-box, shoe box, or house, or a deck of cards (draw any one you want), a book, a painting, a candy bar, etc. You could do the same thing with circles, or ovals, or rectangles or triangles, or heptagons.
That brings to mind a game we used to do as kids, a similar idea to this. One person makes a scribble on a piece of paper, the next person has to look at the scribble and find a part that resembles something, and using more crayons, makes it more recognizable. You could also do this by yourself.
Get absorbed in activities such as these, and for many people, their pain fades.The more detailed and absorbed you get, the more the pain will fade. Give it a few tries. It may feel awkward and difficult at first, but it should get easier.
Thursday, April 25, 2013
Spring Swinging
I had an urge this morning to run outside and swing on the swing-set next door. I love this time of year when each day something else pops into bloom. Never mind that last weekend we had 80 degrees F on Friday, and snow flurries Saturday. We expect that around here, though we are always surprised when it happens.
So back to the swinging. Many people, myself included, want to be outside when the weather starts to warm up.and there are so many things to do outside. I have been playing in my garden, getting it cleaned up, planting seeds, and transplanting some plants. I am done with that for now, and looking for other things to do.
I just got a job working with kids in a virtual school system (I am an occupational therapist). Since I haven't worked with school kids for several years, I have been reading up on therapy with kids to refresh my memory. Kids (and adults) with ADHD and related disorders tend to focus better when they get sensory input throughout their body first- things like running, jumping, climbing, pushing, pulling, rolling on the ground, etc. So my brain has been swirling with active kid-friendly activities, and I thought "swinging!" That used to be a favorite when I was a child, and I have done it off and on as an adult as well.
Swinging is actually a pretty good exercise, if you think about it. You lean back, extending your arms, supporting your upper body suspended from your arms, while your legs stretch out, putting your whole body in one long line. Then you quickly come to a sitting position, using your abdominal and arm muscles, and swing your lower legs back under you. Repeat over and over, flying high up into the sky. Feel the sun on your face, the wind in your hair, you are young once again.
Swinging is not as easy for me as it once was. I have bursitis in my hip.and swings these days seem to all be of the sling style, which press on my hip.I enjoy them anyway, in small doses. Other outdoor children's games and equipment that lend themselves to adult exercise include:running, skipping, jump rope (excellent cardio exercise), hula hoop and a variety of ball games. Bars and rings can be used, depending on height and positioning, and monkey bars are fun to climb (though the last time I tried, I found out that I had developed a fear due to my bifocals distorting distances. When was the last time you heard about someone with bifocals climbing on monkey bars?
Remember what your mother used to tell you, "Go outside and play". Go to a park. Take your children, or grand children, or dog or friend, or by yourself, just go. Play. Have some fun, and get some exercise while you are at it. Keep in mind you haven't done any of this stuff in a long time, so go slow, Choose activities that you think you will enjoy. and that you think you can safely do, considering how your body is doing that day. Push it a little, but only a little.If you push just a little, you will recover quickly, and want to go back. If you push too much, you will take longer to recover and not want to do it again.
Swing (or hula hoop) into spring!
So back to the swinging. Many people, myself included, want to be outside when the weather starts to warm up.and there are so many things to do outside. I have been playing in my garden, getting it cleaned up, planting seeds, and transplanting some plants. I am done with that for now, and looking for other things to do.
I just got a job working with kids in a virtual school system (I am an occupational therapist). Since I haven't worked with school kids for several years, I have been reading up on therapy with kids to refresh my memory. Kids (and adults) with ADHD and related disorders tend to focus better when they get sensory input throughout their body first- things like running, jumping, climbing, pushing, pulling, rolling on the ground, etc. So my brain has been swirling with active kid-friendly activities, and I thought "swinging!" That used to be a favorite when I was a child, and I have done it off and on as an adult as well.
Swinging is actually a pretty good exercise, if you think about it. You lean back, extending your arms, supporting your upper body suspended from your arms, while your legs stretch out, putting your whole body in one long line. Then you quickly come to a sitting position, using your abdominal and arm muscles, and swing your lower legs back under you. Repeat over and over, flying high up into the sky. Feel the sun on your face, the wind in your hair, you are young once again.
Swinging is not as easy for me as it once was. I have bursitis in my hip.and swings these days seem to all be of the sling style, which press on my hip.I enjoy them anyway, in small doses. Other outdoor children's games and equipment that lend themselves to adult exercise include:running, skipping, jump rope (excellent cardio exercise), hula hoop and a variety of ball games. Bars and rings can be used, depending on height and positioning, and monkey bars are fun to climb (though the last time I tried, I found out that I had developed a fear due to my bifocals distorting distances. When was the last time you heard about someone with bifocals climbing on monkey bars?
Remember what your mother used to tell you, "Go outside and play". Go to a park. Take your children, or grand children, or dog or friend, or by yourself, just go. Play. Have some fun, and get some exercise while you are at it. Keep in mind you haven't done any of this stuff in a long time, so go slow, Choose activities that you think you will enjoy. and that you think you can safely do, considering how your body is doing that day. Push it a little, but only a little.If you push just a little, you will recover quickly, and want to go back. If you push too much, you will take longer to recover and not want to do it again.
Swing (or hula hoop) into spring!
Wednesday, April 17, 2013
A Prayer for Any One, Any Day
I want to share with you my favorite prayer. Even if you normally don't pray, keep reading. This prayer is non-denominational, and doesn't mention anything relating to G0d or religion until the last line, and you can leave that off if you want. I found this prayer in the Reform Jewish prayer book, Mishkan T'filah.It is normally read on Shabbat (Sabbath), but other than the last line, can be read any day. It was written by Rami Shapiro, and originally was published by the Reconstructionist Press in Kol Haneshama.
May these hours of rest and renewal
open our hearts to joy and our minds to truth.
May all who struggle find rest on this day.
May all who suffer find solace.
May all who hurt find healing on this day.
May all who despair find purpose.
May all who hunger find fulfillment on this day.
And may this day fulfill its promise.
Baruch atah Adonai, m'kadeish HaShabbat.
(Praise to You, Adonai our G0d, who sanctifies the Sabbath.)
I often can feel my attention and intention increase while reading this prayer, as compared to other prayers we read during the typical Shabbat service. I think that is because all too often, I can fit myself into one or more of these categories, and I am seeking healing.
For myself and for everyone, I pray for rest, solace, healing, purpose and fulfillment, today and every day.
Amen
May these hours of rest and renewal
open our hearts to joy and our minds to truth.
May all who struggle find rest on this day.
May all who suffer find solace.
May all who hurt find healing on this day.
May all who despair find purpose.
May all who hunger find fulfillment on this day.
And may this day fulfill its promise.
Baruch atah Adonai, m'kadeish HaShabbat.
(Praise to You, Adonai our G0d, who sanctifies the Sabbath.)
I often can feel my attention and intention increase while reading this prayer, as compared to other prayers we read during the typical Shabbat service. I think that is because all too often, I can fit myself into one or more of these categories, and I am seeking healing.
For myself and for everyone, I pray for rest, solace, healing, purpose and fulfillment, today and every day.
Amen
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