Sensory Defensiveness Ideas

It can be very uncomfortable to be sensory defensive, to be overwhelmed by the sensations that the world throws at you.Sensations that most people dismiss as background sounds or sights may seem harsh and irritating, making it hard to focus on work, lessons or conversations. The easy answer is just to avoid whatever causes these bothersome sensations. In real life, avoiding them isn't very easy.Here, in this third of three blog posts on Autism and Fibromyalgia both sharing issues with sensory defensiveness, are some ideas for coping better.(Check out the 1st post, Sensory Defensiveness here, and the 2nd one, Sensory Processing and Pain here.)
For auditory issues: earplugs, listening to, or better yet, making music, white noise machines, nature sounds, water fountains. For visual: turn down lights, wear sunglasses, wear hat with a brim to shield from light source
I have had problems off and on with tactile defensiveness. I need to take the tags out of all my clothes, because they scratch and claw at me. I have sections of my skin on my arms and legs that are so hypersensitive that I am constantly aware of the sensation of my skin. Sometimes it is a slight burning feeling, other times it is a little more intense, not quite painful, but constantly in my awareness.Some ideas for tactile defensiveness, besides taking tags out of clothes- make sure fabrics of clothes are acceptable, buy used clothing that is already broken in, use fabric softener,  wearing skin-hugging clothing like spandex,  massage,  rub skin with lotion, warm bath, bean bag chair, hammock. In addition, any kind of activity that requires muscle work- exercise, gardening, pushing, pulling, carrying, etc, seems to calm the signals down a bit.
As with anything, everyone is different. Experiment, try different things, try variations on what I suggest, find what works for you.  


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Sensory Processing and Pain

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.      

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.

From One Sheryl to Another

I got an email yesterday from someone asking for my help to raise money to pay for medical expenses for his partner. I don't normally post things like this here, but I had to post this. Her name is Cheryl (okay, so she spells her name wrong), she has Sjogren's Syndrome, Fibromyalgia, thyroid issues and a sister named Maria (my sister is Marcy-close enough). Here is his letter, along with the link to the youcaring.com page where you can read more about Cheryl and her ordeals, and donate as well, even if your name isn't S(C)heryl. Youcaring is a site where individuals and causes can set up a fund-raising page to raise money fee free.

Hi,

Sorry to write at this address. I ran across your blog and was wanted to know if you could help me. My partner Cheryl has been diagnosed with sjogren's syndrome, IgA deficiency, fibromyalgia, and secondary adrenal insufficiency. She also has had to have her thyroid ablated. The history of how we came to these diagnoses is long and complicated. The short story is that she hasn't had much success with traditional doctors, but about a year ago she started seeing a alternative medical care doctor who specializes in classical Chinese medicine.  His treatment as well as some dietary changes (eliminating wheat gluten for one) have helped her tremendously. Prior to this treatment she was bed-ridden because of the pain all over her body and was loosing weight.

The reason I am writing is that these treatments are not covered by insurance forcing us to pay out of pocket. Because we cannot afford these treatments I have started a fund-raiser to help pay for the treatment. We have already reached out to friends and family and have used Facebook to raise funds, but I have found that I need to reach out further. My request of you, if you can, is to post a link to our fundraiser on your blog to try to help spread the word. I don't have a Facebook page myself and am not good at social networking. Here is the link to our fund-raiser and gives a more complete story:

http://www.youcaring.com/medical-fundraiser/cheryl-s-medical-fund/40186

By the way we live in Portland Oregon with two children (twins!)

Thanks for taking the time to look at this.

Barry

Fibromyalgia Organizations

Within the past five days, I found out about the demise of one Fibromyalgia organization and about the existence of another one that I did not know about. Since some of you out there in Readersville share this lovely malady with me, I thought I would share this info with you. First, I got a postcard from the Fibromyalgia Network that due to deteriorating health of Kristin Thorson, the editor, they are closing up shop. They have been in existence for 25 years, providing information and support for people with Fibromyalgia.
Their website, http://www.fmnetnews.com   has lots of information about fibro, about coping, and a good number of links to other helpful sites. Kristin dedicated her life to searching out and reading research regarding Fibro, and published it, along with helpful tips, etc., in a quarterly newsletter. I will miss reading it, and I wish Kristin all the best in her coping and quest for healing.
The organization I just learned about- today, as a matter of fact- is the National Fibromyalgia and Chronic Pain Association (NFMCPA).  Their subtitle is A Global Community for Support, Advocacy, Education and Research.  I have just begun to explore this website, but it appears that there is quite a bit there to explore. One area I find especially of interest is a long listing of research projects looking for participants. I have been involved with 3 projects so far, and encourage everyone to get involved. The only way they will learn more about our illnesses and how to treat them is if they do research, and that requires people with these illnesses to participate. The website has a long listing of overlapping conditions (I checked, Sjogren's Syndrome is listed). They also publish a magazine 6 times per year, called Fibromyalgia and Chronic Pain Life.  You can read it online for $2.00 an issue, but I chose to get a print subscription, because I find it easier to read. You can get the print version for $6.95, which includes access to the digital version, as well as a monthly newsletter, and email alerts.
I know there are other Fibro related organizations and websites, but these two have been tossed into my radar this week. If anyone has a Fibro or pain related org. or site they would like to recommend, post a comment, and I will check it out.

Sing to the Heart

Yesterday was a rough day for me. Work was a bear (too much work, not enough staff, same old story...). My plantar fasciitis continues to bother me, despite 2 injections into my heel on Monday. My knee and hip, apparently jealous of my foot, continue to clamor for attention. For about a month now, until around 10:30 am every morning, my skin has sort of an irritable hypersensitive feeling, like a fresh scrape: a gift of my Fibromyalgia, I believe. On top of that, my stomach was in turmoil from a Cipro I was given to ward off infection after some medical testing. (Thank you for allowing me to complain. I'm done now.) I have been easily discouraged lately, with all this going on at once. Last night, I was given a gift that lifted my spirits, and sang directly to my heart. I am involved with a Jewish women's group that meets each month to celebrate Rosh Hodesh, the beginning of the Hebrew month. Last night was our final session of the year. As a special treat, we had a Jewish women's a cappella group from Pittsburgh, PA, Kol Shira. When I am down, one thing I know I can count on to bring me up is music, especially music I can sing along with, my first choice being Jewish music. This group was perfect, with both English and Hebrew, and the majority of songs familiar to me, along with some new ones to delight me. I sat on the floor, at times singing along, other times, I closed my eyes and allowed the music to wash over me, to flow around me and through me. One of the singers told us that she is a music therapist. I was in need of healing, and this music was my healer, my therapy.  I bought their CD, Speak to the Heart, because their music spoke to mine. Two songs they sang last night especially spoke to me, and both are on their CD. (Note: the links are for other groups singing these songs.) The first is called Hine Ba Hashalom, which means Here Comes the Peace. It was a popular Israeli pop song a few years back, is upbeat, with catchy lyrics and is fun to sing. The other song that hooked me was a song called Dig Down Deep. Here are part of the lyrics: 'I'm digging way down down to the bottom of my soul; I'm digging way down way down deep. I'm digging way down down to the bottom of my soul; There's clear water running through me....' My Sjogren's Syndrome body forgot about that water running through me. It sure was refreshing to find it again. Every time I have an experience like tonight, it hits me again just how powerful music can be. Music has been used for millennia for worship, communication and healing. Whether it is fast or slow, loud or soft, smooth or choppy, reverent or irreverent, vocal, instrumental, all or none of the above, there are few people who have never been touched by music. People with chronic pain and illness know all too well what discourages us. What re-courages you? What gets to the bottom of your soul and brings you peace? 

It's Not My Fault

This post is sort of a companion post to 'Permission Not To', which I wrote 3 weeks ago.  That post was about giving myself permission to take care of my own needs rather than take care of other tasks.  The title of this post, 'It's Not My Fault' sounds like I am trying to shirk my responsibility.  I'm not, because it really isn't my fault, and it isn't yours, either, so quit blaming yourself.  I am talking about our illnesses.
All too often I read blogs or emails, or hear comments such as "I was too tired to do anything after work yesterday, I went right to bed. I am worthless to my family."  Or "I wasted the whole day in bed yesterday because the pain was so bad. I didn't get any housecleaning done.  It is a wonder my husband puts up with me."  Statements like these are blaming the victim (aarrggghhhh!  I hate that word!)  Both these examples could be made by people with chronic illness or pain, and both blame themselves for the results of having that illness or pain. 
I know for a fact that I did not raise my hand and ask to be given Sjogren's Syndrome, Fibromyalgia, etc, and I am going to guess you did not ask for whatever you have, either.  It is unclear for many illnesses why some of us are so blessed, but it is often not anything we did.  Likewise, the symptoms are not something we asked for, or caused by anything we did.  Extending that to the next step, the results of those symptoms are not something we asked for or anything we did.  If you can't do something because or pain, fatigue, or other symptoms of your illness, you are not to blame.  It is true that maybe you could manage your time or energy differently, but frequently, it would not have made a difference. 
Take yesterday, for example.  I woke up tired.  I spent the whole day in a fog.  I had alot of things that I needed and wanted to get done, but accomplished very little.  I could beat myself up over that.  After all, that puts more of a burden on me to get things done today.  But I won't beat myself up, because I didn't ask to wake up in a fatigue fog.  I got enough sleep, it just happened.  It's part of the package of who I am.  Getting upset about days like that won't make them go away, it would just make them more miserable.  I would rather go with the flow, and just accept them, and remind myself that I did the best I could.

Sometimes its Worth the Pain

I get monthly e-mail updates and quarterly journals from the Fibromyalgia Network.  They have a very informative website, as well as good articles in the journal and updates.  One of the articles in the update I just got was about a survey that was done with people with fibromyalgia.It was performed by Lillemor Hallberg, Ph.D., at Halmstad University in Sweden.   It was synthesized into 6 strategies for living a balanced life with fibro. The 6 strategies are:
1. Distract yourself from pain. 
2. Participate in activities that alleviate your pain.
3. Avoid unnecessary stress.
4. Use good days wisely.
5. Plan activities in advance.
6. Too much activity is sometimes worth it.
I want to comment on this last one.  Most strategies we hear about are strategies for decreasing the symptoms we don't like.  This last strategy is different.  This one tells us that while decreasing symptoms is good, you have to live your life, even if it means increasing symptoms sometimes. If you always err on the side of caution and avoid anything that causes pain or fatigue, you are missing out on life.  
Sometimes a family gathering or a social event are worth the price of a few days pain afterward.  The trick is knowing how much and how often. Each of us is different, there is no magic formula. It takes thought, and perhaps some trial and error.  What is important to you?  How much is this event/activity worth to you?  Project into the future to the day after the event.  You are lying in bed, groaning.  Are you thinking, "Where was my brain?  I should not have done that."  Or are you thinking, "Man, do I hurt.  But it sure was great seeing everybody."  If you skipped the event, would you be regretting it the next day?  
Asking yourself these kinds of questions will help you identify when it is worth it to push yourself past your usual limits, and when it is not worth it. You be the judge.  It is your life, live it.  (Yeah, I know.  Easier said than done.  ; )
The article ends with this:  
The only common strategy the researchers did not endorse was to ignore pain. “By ignoring pain, the women’s fast pace and hyperactivity is maintained,” says Hallberg. “This will probably result in increased pain and fatigue and increase the imbalance.” While the researchers felt the distraction and activities strategies were key and could be learned, patients felt that reducing stress might have the best impact.   

The Princess and the Pea had Fibromyalgia

'The Princess and the Pea' is a fairy tale first published in Danish by Hans Christian Andersen in 1835.

A young prince comes of age, and wants to find a suitable wife. She must be of royal blood, and therefore of great sensitivity. One stormy night a girl seeks shelter in their castle, stating she is a princess. The prince's mother, the queen, sets up a scheme to test if the girl is of appropriate delicacy and sensitivity. She stacks up a pile of twenty mattresses and twenty feather-beds, and underneath, places a single pea. The girl must spend a night on this stack of mattresses. Most young ladies would sleep soundly, never knowing that there was a pea underneath the bottom mattress, put there to test their suitability for marriage to the young prince. Only someone of extreme sensitivity, like a princess, would be aware of it. The princess shows up at breakfast the next morning groggy and in pain from her ordeal trying to sleep on such an uncomfortable bed. (Sounds a lot like how I show up at breakfast every day.)

I believe this to be the first, and possibly the most accurate test for Fibromyalgia. Think about it. Fibromyalgia is defined by our over-sensitivity to tactile stimuli. Who but a person with Fibromyalgia would be able to detect such a slight alteration? And who but a person with Fibromyalgia would have their sleep so easily disrupted? This princess exhibits all the classic Fibromyalgia symptoms: overly sensitive skin, poor sleep, pain throughout her body, and even Fibrofog.

The prince is delighted that he at last has found a suitable bride. (Apparently, personality was not of any consequence.) The story ends with the young couple getting married, and the pea was put on display at the royal Museum. Being married to a prince could be a good gig for someone with Fibromyalgia. There are servants to wait on her hand and foot, she does not need to do anything she does not want to do. Her time is free for her to rest, and to do her physical therapy exercises to help her recover from the night she spent on the pea-altered pile of mattresses.

Gluten-Free Versus Gluten-Lite, Take 2

About three weeks ago, I wrote about my plan to try eating gluten free for a month and then eat gluten to see how it affected me.  I was tested for celiac and it was negative, but I have heard that even without celiac, a gluten free diet can be helpful for people with Sjogren’s Syndrome, Fibromyalgia and hypothyroid, three of the ‘challenges’ I live with.  So the results are in -sort of.  

One thing I noticed is that I have gone from using 2 prescription-strength Pepcids a day, and still having problems with acid and reflux, to using only one Pepcid a day, with few problems.   

On Friday, one of my husband’s patients (he is a psychologist) brought him some homemade chicken noodle soup.  I decided that, since I had gone 4 weeks without gluten, this was as good a time as any to put my system to the test.  How ironic that I was having chicken soup, usually thought of as a cure-all, to see if it would make me sick.  **A note to my husband’s patient- This is not a comment on your cooking.  The soup was delicious.  The test was how my body would react to the gluten in the noodles.  And react it did.

We ate the soup with English muffins for dinner. Within a half an hour, I developed a stomach ache.  It was gone in the morning, but came back when I ate half of a bagel for breakfast.  I had half of a sandwich on rye bread for lunch, the stomach ache continued.  ENOUGH!  My body shouted.

In my previous post, I speculated on whether I would need a strict gluten free diet, like a person with celiac disease needs, or, since I do not have celiac, would a ‘gluten lite’ diet suffice?  True confession:  the diet I followed this past week was not completely strict.  I did not eat anything with blatant gluten ingredients, but I did eat a few things that were labeled ‘packaged in a facility that also packages wheat’, so there may have been some contamination.  I also ate oatmeal for breakfast most days.  Oats, themselves don’t have gluten, but they are sometimes grown in fields that alternate with wheat, so may have some contamination.

My next experiment will be whether my body can handle small amounts of gluten.  Yesterday, we ate at Cracker Barrel, a favorite restaurant of mine.  I asked them about gluten free foods, they said that they don’t claim that any of their menu is gluten free.  I chose items that are less likely to have gluten:  grilled trout, corn, hash brown casserole and coleslaw.  I did not ask for my food to be cooked separately, as a strict gluten free person would require, and I even ate a half of a corn muffin, which was made with some wheat flour.  I did fine.

My plan is to eat mostly gluten free, any products which are primarily grain, such as bread and pasta, I will stick with gluten free. But I will allow myself to use products with a small amount of gluten, such as my favorite mustard. Someday, I may try a strict gluten free diet, to see if it helps me even more, but for now, I am going to stick with ‘gluten lite’. That is the best of both worlds (at least for me).

Gluten Free Versus Gluten Lite

My oldest son has a girlfriend who has celiac, as do several of her relatives. She has one aunt who likely has it, but she does not want to get tested. Perhaps she believes that as long as she doesn’t get tested, she doesn’t have it. More likely, she suspects she does have it, but as long as she doesn’t get it confirmed, she doesn’t have to follow the gluten free diet. If she does have celiac, this diet would help her feel physically better, but would make eating more complicated, especially when it comes to eating out or in social settings. I can sort of understand that thinking, but not really.


I have been tested for celiac, and I was negative. I have heard from various sources that people with Sjogren’s Syndrome do better on a gluten free diet, as do people with Fibromyalgia. I heard recently that people with hypothyroid also do better on gluten free diets. Since I have all three of these, I decided to try out being gluten free, and see how I do.

I have been ‘gluten lite’ for about two weeks, and planned to go gluten free this week. I changed my mind, and have continued the gluten lite diet for another week, and will go ‘all the way’ next week. This week there are too many complicating factors. The first one was a pot luck gathering with people from my temple on Christmas day. I know that there will be pot lucks in the future that I will have to navigate gluten wise, but since I am doing this as an experiment, rather than knowing for a fact that I will be helped by this diet, why make it harder for myself to adhere? The other complicating factor is my current situation: vacation for a week at our cabin, with our two sons (one is in college, the other in grad school.  Having all four of us together is a special event these days.)

At the pot luck, I had some soup with pasta in it, taking the pasta out, and I ate a piece of pecan pie, eating the filling but not the crust. Both of these I consider gluten lite, because I didn't actually eat the gluten-containing parts, but the food is contaminated if it comes in contact with gluten. Here at the cabin, I have been more stringent, but still not quite gluten free. I have my own bread, made gluten free pancakes when they had regular pancakes, and have been reading labels to avoid using products with gluten in them.  I did have a piece of cheesecake and ate the crust.

So the question is, since I don’t have celiac, the most common reason people eat a gluten free diet, how gluten free do I need to be? I know that for people with celiac, even a crumb of gluten-containing bread can throw their system off and make them symptomatic. Is that true for people who don’t have celiac as well? Or is ‘gluten lite’, as I have been eating this week, close enough? My plan is to go gluten free for two or three weeks, then eat something with a substantial amount of gluten in it, and see if it causes any problems for me. If it does, I will go back on the gluten free diet for a few weeks, and then try eating a small amount of gluten, and see how I do.

This has been a learning experience for me, and for my husband as well.  We were at a cafe the other day, and I was asking questions about the ingredients in something I was thinkin of ordering, and my husband got impatient.  If it turns out that being gluten free helps me, that is one of many changes he and I will have to get used to. I will let you know how my experimenting turns out.  I will also have more info about gluten and following a gluten free diet in a future post. 

Fibromyalgia: What a Pain

One of my earliest posts was about Sjogren's Syndrome, but I never wrote about Fibromyalgia, my other chronic illness.  My thinking was that few people have heard of Sjogren's Syndrome, and more people have heard of Fibromyalgia (or Fibro, as it is familiarly called by some people).  There is alot of misconception out there about Fibro, so I will explain some of its basics today.

'Fibro-my-algia' literally means 'fibrous tissue-muscle-pain'.  That is the main symptom as well: widespread muscle pain throughout the body.  Other symptoms include an increased painful response to pressure, fatigue, brain fog and sleep disturbance.  A common way of diagnosing Fibro is to press on 18 specific 'tender points' on the body, if 11 out of the 18 are overly painful, the diagnosis is positive.  Others say that you don't need 11 positive points for a diagnosis, that fewer painful points and a history consistent with Fibro is enough for a diagnosis.  I have never been tested for the 18 points, but was diagnosed based on the my history, and that 'if you touch me anywhere, I hurt'. 

For some people, the fatigue can be as much or more debilitating than the pain.  The fatigue of fibro can be unrelenting exhaustion.  Some people describe it as feeling like they always have the flu, with the muscle aches, weakness and wiped out feeling.  It often coincides with mood disturbances, anxiety, or depression. People with Fibro often have sleep that is unrefreshing or light, so rest does not help the fatigue.  A friend of mine describes her fatigue as feeling like someone cut the tips off of her fingers and all the blood drained out of her.  I describe mine as my body parts are disconnected and full of lead, and my brain is full of marshmallow cream. 

The brain full of marshmallow cream leads me to the next symptom, brain fog, sometimes referred to as 'fibrofog'.  This is a difficulty in concentration, short and long term memory disruption, and difficulty in decision making.   My husband can tell when I am foggy when I stare at him blankly when he asks me to make even a simple decision. 

Some websites that have helpful info on Fibro are the National Fibromyalgia Association, WebMD and wikipedia.  A couple of good books are; Your Personal Guide to Living Well with Fibromyalgia, published by the Arthritis Foundation and Living Well with Chronic Fatigue Syndrome and Fibromyalgia, by Mary J. Shomon.  Along the right side of my blog you can find a widget with posts by Karen Lee Richards, who was diagnosed with Fibro in 1996, and is the co-founder of the National Fibromyalgia Association. 

One of the problems facing people with Fibro is that many people, including physicians, still don't believe that it really exists as a physical illness.  They think it is all in the head of the patient, because there are no lab tests that diagnose it.  This is changing, as more research is done, and possible links are being found between Fibro and central nervous system dysfunction, neuroendocrine dysfunction, and cerebrospinal fluid abnormalities, among other abnormalities  So far, there is nothing conclusive, but research is promising  Read the hypotheses posted on wikipedia for more on this.

SING AND GIVE (YOUR PAIN) AWAY

I hurt.  I think most people with Sjogren's Syndrome, all people with Fibromyalgia, and many people with and without chronic illness could relate to that.  I have one of those bodies that if you touch me anywhere, I hurt.  I get tendonitis very easily, then it takes months to go away.  I have often said that I would like to go to a body shop and get a new body.  My husband said he would like to come with me to help pick it out.

Currently, I have Plantar Fasciitis in my left foot, which I have had for about 10 months now.  I have tendonitis in my right elbow, which started 6 months ago, when we started pack and lugging boxes for our move, which was in January.  I have had pain in my right knee off and on for a month, which for the past 2 days has hurt whenever I move it or put weight on it.  Last night at Temple I started feeling sorry for myself.  I had a dilemma:  During the service, there are several times when we have to stand up or sit down.  I thought of using my hands to ease myself up or down to help my knee, but that would hurt my arm.  I finally figured out a way to use my left hand, and put most of my weight on my left foot.  Awkward, but doable.

The Social Action Committee of our temple talked about some of the projects they are involved in.  It got me thinking:   I may have pain, fatigue and other symptoms, but I also have a safe and comfortable home, enough food and other necessities, a job, and a family that loves me and helps me.  I went to a workshop on stress a few years ago, and the main thing I remember from it was the instructor telling us to say to our selves, "At least I'm not..." and find 3 things with which to fill in the blank. That really helps to put things in perspective. 

Helping other people helps you as well as them.  Donating money or other goods helps, but actually doing something helps more.  It doesn't have to be anything big. I like doing Random Acts of Kindness, such as complement a stranger on something they are wearing, or pull out a shopping cart and give it to the person who came into the store behind me.

I went to a new PCP (primary care physician) on Thursday.  He told me to always wear an insert in my shoe to support my foot, and to wear braces on my elbow and knee.  (My elbow and knee should have really nice smiles after this.) I already had these things from previous attempts to heal body parts. I pulled them out and put them on this morning.   They are blatant reminders that I have several body parts that are out of whack.  So once again, I was feeling sorry for myself.

We like to go to our Temple's Saturday morning Torah study class.  Before the class is a short service, which is always mostly singing.  I love to sing.  I don't have the best voice, but it isn't the worst voice either.  I don't care.  I sing because it feels good.  I have often heard people say, "You don't want me to sing, everyone would run out of here screaming",  (or variations on that theme).  Nonsense.  Unless you are in a performing choir, singing isn't about how it sounds It is about how it feels.  As my husband said, "When you get a room full of people singing off key, it sounds pretty good."  Children often sing, and no matter how it sounds, it makes us smile.  Worship in most religions throughout history has included singing.  I heard somewhere (though I can't remember where) that singing releases endorphins, the same 'feel good' chemical that our bodies release with exercise. When I am down, I like to put on a cd that is so familiar that I can sing every line.  It always turns me around.  This service did, too. 

The message of this post is to go out and sing while you commit Random Acts of Kindness.  Or you can do them separately, and spread out your 'feel good' activities. 

ARTIST AND THERAPIST

Welcome to my blog. This blog is about art, healing, and using art for healing.

ART: I am an artist. My favorite media are colored pencils, papercutting, stained glass and silk painting. I like bright colors, and often contrast them with black. My themes are Jewish/spiritual, nature, humor, and anything else that calls to me. Sometimes I will show a piece of my art, and tell what inspired me, and about the techniques I used, and sometimes I will have patterns and instructions for projects you can try.

HEALTH: I have Sjogren's Syndrome, fibromyalgia, and a variety of other odds and ends. For people who don't know what these are, I will help you understand. For those people who know all too well what they are, I will write about coping, and about living your life the best you can with chronic illness, chronic pain and fatigue.

ART FOR HEALING: Evidence has shown that art can heal in many ways. The process of creating art can be soothing, can be a release, can be similar to meditation, and much more. Art also provides a means of expressing thoughts and emotions for which we can't find the words. I will write about these processes and benefits, and sometimes provide projects or ideas for you to try.

So, who am I? I am not an art therapist, but I play one on TV. Actually, I sometimes play one at my job on an inpatient psychiatric unit at a hospital. I am an occupational therapist, I work with a team that includes occupational therapists, art therapists, recreation therapists and chemical dependency counselors. I don't work full time, I work PRN. That means I work 'as needed'. Whenever someone else on the team is out for vacation, conference, sick or whatever, they call me in to cover for them. I lead groups on a variety of topics, including stress management and anger management, with a different slant depending on who I am covering that day. I am also a founding member and co-leader of our local Sjogren's Syndrome support group. My actual title is 'education chairperson', though I sometimes accidentally refer to myself as the 'science officer'. I am the one who either finds a speaker for our meetings, or leads the session myself, on some aspect of coping.

I also love books, and will share with you some of my favorites creative and self help books.