Our topic yesterday in my Chronic Illness/Chronic Pain Support Group meeting was Stress Management. We talked about symptoms, causes, feelings, even a bit about what influences how an individual copes. We focused on stress related to living with chronic illness and pain. We have all the stresses of living in this world that everyone else has, but on top of that, we have to cope with symptoms of the illness itself, side effects of meds, doctors' and other appointments, keeping track of meds and prescriptions, and the list goes on. We have more stress, but because of our illness, we may have less resources with which to cope.
We spent the bulk of our time talking about how to manage our illnesses and cope better with stress. The group is scheduled to run from 4:30-6:00, but we generally end around 6:30. Yesterday, some of the people didn't leave until close to 7:00. We talked about all kinds of things, both illness and non illness topics. One of the people asked me specifically how I cope. I came up with three things.
The first one is that I have learned not to let things get to me (much). For instance, if I am driving and another driver cuts me off, or is going too slow for my taste, I used to get annoyed, and curse, etc. This response had no impact on anyone but me. I realized one day that I would get to my destination the same time, no matter how I responded. If I got angry, I would arrive at my destination out of sorts. If I just said "It is what it is", or some other comment of that ilk, I would drop the incident from my mind, maybe sing with the radio or focus on the book I was listening to on CD, and I would arrive at my destination in a good mood. I seldom get my buttons pushed, because I don't respond to it. This ability sure makes life smoother and more enjoyable. This does take some practice, and the real trick is to catch yourself before you react, step back and think about what response would get you the best outcome. I think my occasional meditation and mindfulness practice helps in this area.
Another management technique I use is that I take each task in its turn, and don't worry about the future. Over the past two weeks, I have had a series of things I had to prepare for (on top of work, my blog and life issues), as is frequently the case. I had my Chronic Illness support group meeting to prepare for two weeks ago, then I had to get our apartment ready for Passover, then prepare for a family gathering we were hosting, then another Chronic Illness support group meeting that was yesterday, and last, a Sjogren's Syndrome (SS) support group meeting the day after tomorrow, where I am supposed to present a review of half of the sessions at the Sjogren's Syndrome National Patient conference I went to the beginning of April. Mary, our SS support group leader wanted to decide two weeks ago who would present which topics from the National conference. I told her to decide which she wanted to do, and let me know which I was responsible for, and I would work on it when its turn came up (today). I put it out of my mind, and did not worry about it. I will get it done today, and not worry about it again. Tomorrow I am scheduled to work at the hospital. Two of our team will be out, and just two of us will be there. I used to worry about days like that, but now I don't. I will go in tomorrow, we will divide up the tasks, and get done what we can, and "it is what it is".
I can't remember what the third management technique was that I told her. I am not going to worry about it, and I am not going to let it get to me. If I think of it later, and it seems significant enough, I will let you know. If not, "it is what it is". It is time for me to start organizing my review of the conference for Saturday's meeting.
BUTTERFLY BANNER
Papercut and colored pencil art by Sheryl Aronson X 5
Thursday, April 28, 2011
Monday, April 25, 2011
Be Realistic
This past week was a holiday for many of us (Passover and Easter). If you celebrated, you likely either had people over, went to someone else's place, or both. I was thinking this morning about tips for hosting holiday (or any) gatherings, perhaps a bit late for this week, but keep it handy for the next round.
About 10 years ago I wrote down who was coming to our Passover Seder, what the menu was and who was bringing each item, then a long list of all the tasks that needed to be done, no matter how small. I crossed off each task as they were done. The genius of this piece of paper is that I keep it from year to year. This way, I don't have to reinvent the wheel. I have my list, make modifications as needed, and I am organized. Not only do I plan ahead, but I also do ahead. I look at all the tasks that have to be done, and start working on them several days in advance. I shopped a week in advance for most items, leaving just a few items to get later, such as the turkey. Some food can be made ahead and either frozen or refrigerated.
In my family, we have a tradition of the hostess planning the menu, then giving out the assignments. This way, no one is stuck doing all the cooking, but there will be a relatively organized meal. You can be specific about what you want, or leave it open, as 'a dessert', a starch', etc. One of my guests had the assignment of 'a vegetable'. She brought two, lightly marinated summer squash, and lightly marinated green beans. This was a nice surprise and a switch from the more usual broccoli or asparagus.
I have never been a perfectionist, except in my art. This serves me well in cleaning my home. I follow the philosophy of 'good enough'. I gather papers into piles, put away excess junk. We have someone who cleans our apartment and offices every two weeks, so I don't bother vacuuming or dusting. I don't have spare energy, and I am not going to waste what I have on doing more than needs to be done. I keep the place fairly clean, though not necessarily neat, and I have never had a guest refuse to eat my food or sit on my furniture.
My husband's understanding of household upkeep is mostly in the electronics realm. He doesn't see the need to straighten up his piles of papers, etc. I have four choices here. I can get angry and yell, rant, complain, etc., which will make both of us grouchy. I can explain to him that we need the apartment nice and clean for our company, to which he will point out the things that he does do, and that cleaning is not a priority for him (I know this from experience). If I really want it clean, I can do it all myself, or I can just accept that this is how things are, and that it is okay. I choose the last choice. I tend to go with the flow these days.
I never turn down offers of help, and can even ask for it when I need to. Who am I to begrudge another person of an opportunity to do a good deed?
Take naps when needed. If you have planned ahead, even the day of the event can be fairly relaxed. I like to take some down time an hour before people are scheduled to arrive. That way, I can get my break, but also do the last minute tasks. I don't shy away from taking naps or time outs at other people's homes, either. I tend to get overwhelmed from noise and commotion, and I will shut down if I don't get away from it for awhile.
I guess this can all be summed up by saying be realistic. Not just think realistically, but be realistic, too. If you are realistic about what you can reasonably do, you can find strategies that work for you to get needs met without overdoing it. It doesn't make sense to push yourself to make a perfect event for everyone else at the expense of your own health, or even your own enjoyment.
About 10 years ago I wrote down who was coming to our Passover Seder, what the menu was and who was bringing each item, then a long list of all the tasks that needed to be done, no matter how small. I crossed off each task as they were done. The genius of this piece of paper is that I keep it from year to year. This way, I don't have to reinvent the wheel. I have my list, make modifications as needed, and I am organized. Not only do I plan ahead, but I also do ahead. I look at all the tasks that have to be done, and start working on them several days in advance. I shopped a week in advance for most items, leaving just a few items to get later, such as the turkey. Some food can be made ahead and either frozen or refrigerated.
In my family, we have a tradition of the hostess planning the menu, then giving out the assignments. This way, no one is stuck doing all the cooking, but there will be a relatively organized meal. You can be specific about what you want, or leave it open, as 'a dessert', a starch', etc. One of my guests had the assignment of 'a vegetable'. She brought two, lightly marinated summer squash, and lightly marinated green beans. This was a nice surprise and a switch from the more usual broccoli or asparagus.
I have never been a perfectionist, except in my art. This serves me well in cleaning my home. I follow the philosophy of 'good enough'. I gather papers into piles, put away excess junk. We have someone who cleans our apartment and offices every two weeks, so I don't bother vacuuming or dusting. I don't have spare energy, and I am not going to waste what I have on doing more than needs to be done. I keep the place fairly clean, though not necessarily neat, and I have never had a guest refuse to eat my food or sit on my furniture.
My husband's understanding of household upkeep is mostly in the electronics realm. He doesn't see the need to straighten up his piles of papers, etc. I have four choices here. I can get angry and yell, rant, complain, etc., which will make both of us grouchy. I can explain to him that we need the apartment nice and clean for our company, to which he will point out the things that he does do, and that cleaning is not a priority for him (I know this from experience). If I really want it clean, I can do it all myself, or I can just accept that this is how things are, and that it is okay. I choose the last choice. I tend to go with the flow these days.
I never turn down offers of help, and can even ask for it when I need to. Who am I to begrudge another person of an opportunity to do a good deed?
Take naps when needed. If you have planned ahead, even the day of the event can be fairly relaxed. I like to take some down time an hour before people are scheduled to arrive. That way, I can get my break, but also do the last minute tasks. I don't shy away from taking naps or time outs at other people's homes, either. I tend to get overwhelmed from noise and commotion, and I will shut down if I don't get away from it for awhile.
I guess this can all be summed up by saying be realistic. Not just think realistically, but be realistic, too. If you are realistic about what you can reasonably do, you can find strategies that work for you to get needs met without overdoing it. It doesn't make sense to push yourself to make a perfect event for everyone else at the expense of your own health, or even your own enjoyment.
Thursday, April 21, 2011
First Anniversary Blog Post
On 4/21/2010 I posted my first blog post. I introduced myself, and in the second post I explained what Sjogren's Syndrome is. I was writing almost every day back then, now I aim for 2-3 times/week. A few days after that first post, my sister and I 'ran away from home' for an overnight in the Amish area of Ohio. I remember being a bit worried about being away from home for two days, and not having access to my computer. What would I do about my blog? Now, two days doesn't faze me, but I try not to go much longer than that or my emails get out of hand, and I feel like I am falling behind in posting.
The biggest changes in my life in this past year include two additions and a subtraction. The first addition is curled up between my knees, taking a bath. She is a calico Siamese, and we have decided that she can share my husband's birthday in May, since we don't know her exact birth date. Her name is Camille, short for chameleon. The people we adopted her from were calling her Snow because she was mostly white with a dark tail and ears. She started developing tan areas, so we changed her name. This was the first I learned that Siamese cats start out white and develop their color as they mature.
The second addition in my life is the Chronic Illness/Chronic Pain Support Group I started running 3 months ago. It is going well, 4-5 people in attendance at the last few sessions, with some people becoming regulars. We meet twice a month, each session has an education/discussion portion and a creative portion. The past two sessions were about managing emotions and anger, and next week will be about stress management. A few people aren't so keen on the creative portion, but most people like it. It gives them new ways of expressing themselves, an outlet, a chance to learn new things about themselves.
The subtraction in my life was the elimination of gluten from my diet. That is a more recent change, and I have written about it lately, so I won't write about it now.
For a child, a year is a long time. For someone my age, sometimes they seem to go by so quickly. Overall it has been a good year. My pain and fatigue are relatively in control. I can still work and do most of the things I want to and need to do. I am still enjoying writing this blog, though sometimes it gets to be a challenge finding the time I need to write.
People sometimes ask me about my art, and I don't know what to tell them. The time I used to use for art is now used for writing and preparing for my support group. They are all creative endeavors, but I do miss the art sometimes. I believe that people will make time for those things that are really important to them. On occasion, I do take some time to work on an art project. At some point, I will decide that it is time to make it a priority in my life again, and I will find a way to do it.
The biggest changes in my life in this past year include two additions and a subtraction. The first addition is curled up between my knees, taking a bath. She is a calico Siamese, and we have decided that she can share my husband's birthday in May, since we don't know her exact birth date. Her name is Camille, short for chameleon. The people we adopted her from were calling her Snow because she was mostly white with a dark tail and ears. She started developing tan areas, so we changed her name. This was the first I learned that Siamese cats start out white and develop their color as they mature.
The second addition in my life is the Chronic Illness/Chronic Pain Support Group I started running 3 months ago. It is going well, 4-5 people in attendance at the last few sessions, with some people becoming regulars. We meet twice a month, each session has an education/discussion portion and a creative portion. The past two sessions were about managing emotions and anger, and next week will be about stress management. A few people aren't so keen on the creative portion, but most people like it. It gives them new ways of expressing themselves, an outlet, a chance to learn new things about themselves.
The subtraction in my life was the elimination of gluten from my diet. That is a more recent change, and I have written about it lately, so I won't write about it now.
For a child, a year is a long time. For someone my age, sometimes they seem to go by so quickly. Overall it has been a good year. My pain and fatigue are relatively in control. I can still work and do most of the things I want to and need to do. I am still enjoying writing this blog, though sometimes it gets to be a challenge finding the time I need to write.
People sometimes ask me about my art, and I don't know what to tell them. The time I used to use for art is now used for writing and preparing for my support group. They are all creative endeavors, but I do miss the art sometimes. I believe that people will make time for those things that are really important to them. On occasion, I do take some time to work on an art project. At some point, I will decide that it is time to make it a priority in my life again, and I will find a way to do it.
Tuesday, April 19, 2011
Gluten Free Passover
Passover started last night. This is my first Passover gluten free. In some ways it is easier to be gluten free during Passover, in other ways, more complex. Gluten is found in wheat, rye and barley, and in the derivatives of these grains. During Passover, we are commanded to avoid 'hametz', which can be made from wheat, rye, barley, spelt and oats. Notice any similarities?
Matza, the 'bread of affliction', which is the main starch eaten during Passover, is made from wheat, so obviously matza is a no no. Matza is just wheat and water, baked quickly so that the dough has no time to ferment (that is how hametz develops). This is reminiscent of the Israelites baking their bread on their backs as they fled Pharaoh and Egypt. Flour used to make matza balls and many baked goods for Passover is made from ground up matzas, so that is also out for me. Just as wheat flour is found in many items you would not suspect of having flour in them, matza meal is found in many products.
But there is a commandment to eat matza at one point during the Seder, the festive, highly ritualized meal that begins the week long Passover. The answer? Pikuach nefesh, an over-riding commandment to save a life. Since eating matza would make me sick, I am excused from the commandment to eat it. There is gluten free matza available, but my local stores do not carry it, and I did not order any. One reason is that I am not a big fan of matza in the first place, so it is no great loss that I can't eat it. I did buy a small box of gluten free matza crackers, which are not really Kosher for Passover because they have a leavening agent in them. I am not very strict about following the commandments, so they will be fine for me to use.
We are commanded to feel as if we, ourselves, were brought out of slavery. In the past, I 'slavishly' followed family customs of what to eat. Now I have to think more, to plan more. I have the freedom to choose from a variety of options that are both gluten free and kosher for Passover. Becoming gluten free has shown me a whole world of flours I did not know existed: almond flour, garbanzo bean flour, and flours made from tapioca and amaranth are just a few of the multitude that I have found. Some of these flours are acceptable to use during Passover.
I like to cook, and this experience is opening up new avenues of creativity for me. Some things I took for granted that I could buy off the shelf I can no longer eat because they have matza meal in them. I can make my own, using my usual cooking method of looking at several recipes then making up my own. I can experiment, jotting down notes, so I know what worked and what needs tweaking. I am cooking things I never thought to cook before, like gefilte fish (a traditional Jewish food made from fish that is similar to a meatball, but is eaten cold with horseradish). It came out okay, I have some ideas of how to make it better next time.
They say that necessity is the mother of invention. Food is a necessity, so I am inventing.
Friday, April 15, 2011
Anger Management
This week's support group topic was Anger Management. There are many things in our lives that can make us angry. Besides the things that are common in our society: other drivers, demanding bosses, whining or defiant children, things that break when you need them most, etc., people living with chronic pain or illness have extra causes of anger. Our lives have been disrupted and turned upside down, we have symptoms that won't leave us alone, things that used to be easy are now impossible. Here are some excerpts from my group.
Anger is how you may feel when you get what you don't want, or want what you don't get.
Anger is not right or wrong, but what you do when you are angry can be.
Feelings are your reactions to the world around you. Situations don't trigger feelings, your interpretation of situations trigger feelings.
Anger can:
Motivate you to work harder.
Serve as a warning that something is wrong.
Give you a burst of energy and strength to get you out of danger.
Communicate your needs to you and others.
Anger can also:
Control your thoughts.
Ruin relationships.
Cause pain.
Disrupt your life.
Anger is a problem if:
it is too frequent
it is too intense
it lasts too long
it leads to aggression
it disrupts work or relationships
Anger can be constructive or destructive. Ask yourself, “Does my anger fit the facts of the situation?” “Is the intensity of my anger appropriate?” “Is it worth getting angry about?” “Is my anger helping me or hurting me?”
If your anger motivates you to take positive action to fix a problem, it is helping you.
If your anger prompts thoughts to harm someone or something, including yourself, it is hurting you.
If your anger is hurting you, if it or its intensity doesn't fit the facts, try Opposite Action:
- Step back from the situation.
- Unclench your hands, turn them palms up. Unclench your teeth, relax your face muscles, and smile a half smile. Relax your chest and stomach muscles.
- Take a deep breath, let it out slowly. Do this 2-4 more times, until you are calmer.
- Think about what your anger is urging you to do.
- Do the opposite of what your urges tell you.
eg. If you want to hurt another person, imagine stepping into their shoes, and understanding their point of view. Imagine really good reasons for what has happened.
Do something a little bit nice (rather than mean or insulting).
Try it out:
- What gets you angry?
- Ask yourself, “Does my anger fit the facts of the situation?” “Is the intensity of my anger appropriate?” “Is it worth getting angry about?” “Is my anger helping me or hurting me?”
- Unclench your hands, turn them palms up. Unclench your teeth, relax your face muscles, and smile a half smile. Relax your chest and stomach muscles.
- Take a deep breath, let it out slowly. Do this 2-4 more times, until you are calmer.
- What does your anger urge you to do?
- What would be the opposite of what your urges tell you?
Even if your anger is appropriate for the situation, this process can calm you and help you think more clearly.
Friday, April 8, 2011
Uniquely Me
I have mentioned before the How to Cope With Pain blog and website. If you have not checked them out, please do so, they are very informative and interesting. The author of that blog had a contest last month where people submitted posts and he drew 9 winners randomly to win books related to coping with pain. (I won one of them.) Now he is reaping the benefits by posting the various writings. Several days ago, an essay I wrote was published on his blog (See- I told you the blog was interesting!)
Here is a brief excerpt:
If I had had my choice years ago, I would have preferred not to be ill. But it’s an integral part of who I am, what I do, and how I live my life. My illness has served me in its contribution to the character of this support group. It’s unlikely that this group would even exist if I did not have illness and pain. I would still be able to work full time, and likely would not have thought to start a group for issues I had not experienced.
Go read the rest of my post, and while you are there, explore the site.
Here is a brief excerpt:
If I had had my choice years ago, I would have preferred not to be ill. But it’s an integral part of who I am, what I do, and how I live my life. My illness has served me in its contribution to the character of this support group. It’s unlikely that this group would even exist if I did not have illness and pain. I would still be able to work full time, and likely would not have thought to start a group for issues I had not experienced.
Go read the rest of my post, and while you are there, explore the site.
Sunday, April 3, 2011
I just returned today from the Sjogren's Syndrome Foundation national patient conference. I will write about it in another post. Yesterday, while walking around the Reston Town Center, a shopping/restaurant area near our hotel, we witnessed a magical moment. In the plaza behind the hotel there were a bunch of rose petals strewn on the ground in a vaguely heart-shaped pattern, quickly getting dispersed by the wind. My friend Mary said "We must have just missed it," thinking it had been part of the wedding we had seen getting set up in the hotel. A man nearby said "You didn't miss it. It is about to start. Sit down," he indicated a park bench nearby.
We sat, and within moments a young couple approached, and he lead her into the center of the rose petals. He handed her a white rose that had been lying on the ground, and she added it to the bunch already in her hand. They then talked, whispered, giggled and hugged, eyes shining. He got down on one knee, and put a ring on her finger. They kissed, and the bystanders (and sitters) cheered and clapped. Apparently, her answer was yes. We congratulated the couple, and went on our way to find dinner. (I realized later that the man who told us to sit had been recording, we had interrupted it, and are now a permanent part of this couple's history.)
There are magical moments all around us, some momentous, such as this one, some minute, such as a bud popping open, or an ant dragging 4 times its weight. Observing these moments can bring joy and wonder, at the nature of love and the love of nature. They can jolt you out of your doldrums, and remind you of the goodness of life. Be open to experiencing and observing the world as you find it. It is more fascinating than any reality or fantasy TV show or movie could ever be.
We sat, and within moments a young couple approached, and he lead her into the center of the rose petals. He handed her a white rose that had been lying on the ground, and she added it to the bunch already in her hand. They then talked, whispered, giggled and hugged, eyes shining. He got down on one knee, and put a ring on her finger. They kissed, and the bystanders (and sitters) cheered and clapped. Apparently, her answer was yes. We congratulated the couple, and went on our way to find dinner. (I realized later that the man who told us to sit had been recording, we had interrupted it, and are now a permanent part of this couple's history.)
There are magical moments all around us, some momentous, such as this one, some minute, such as a bud popping open, or an ant dragging 4 times its weight. Observing these moments can bring joy and wonder, at the nature of love and the love of nature. They can jolt you out of your doldrums, and remind you of the goodness of life. Be open to experiencing and observing the world as you find it. It is more fascinating than any reality or fantasy TV show or movie could ever be.
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