My topic for yesterday's Chronic Illness/Chronic Pain Support Group was Motivation, part 2.  The previous session, I did Motivation, and the people in attendance were really struggling with even motivating themselves to taking care of basic needs, so I decided to do a continuation of the topic.  Yesterday we focused on three things: pros and cons, self esteem, and 'parent'/'child'. 

In any decision we consciously make we weigh the pros and cons, even if we don't realize we are doing it. Pros are reasons in favor of whatever it is, cons are reasons against it.  

Self esteem may play a big part in motivation. If you feel good about yourself as a person, you are more likely to make choices that support your well-being, and to be willing to put in effort to take care of yourself. If you don't feel good about yourself, you are more likely to have thoughts such as 'It doesn't matter, anyway, why bother,' and 'I'm not worth fussing over', and to not take care of your needs.

We all have within us different aspects of ourselves. One aspect is a childlike part of us that doesn't want to do anything that is hard or painful or not fun. Another aspect is our 'parent', which takes responsibility for getting our needs met, and for taking care of business. Another way to look at it is the child wants what it wants now (immediate gratification), while the parent looks at the big picture, and is willing to delay gratification if that will give a better deal in the long run.

We did an exercise yesterday that illustrated how these can be applied to increase motivation.  The topic was 'asking for help', an area with which many people have difficulty.  We listed pros and cons of asking for help.  Pros included getting it done, its easier, having company, more fun, etc.  Cons included feeling indebted, embarrassment, having to accept you need help, etc.  The lists came out fairly even, as far as number of items on each list.  We talked a little about how some things on the lists may be more important than others, and if we wanted to, we could assign each one a weight, perhaps 1-5, where 1 is not very important, and 5 is very important.  You would add up the numbers on each side, and see if the pros or the cons added up to the most.

We then decided the 'parent' would probably say, "If you need the help, ask for it".  The child wouldn't actually ask for help, he would just complain that the task is too hard, it isn't fair, etc.  Though asking for help may seem like it would lower your self esteem because of feeling needy or dependent, it actually raises your self esteem, because you are being assertive, taking care of yourself, and getting your needs met.  I asked the people in the group what they would do next time they needed help.  It was unanimous: they would ask for help.  

This exercise can be used for any decision, to motivate you to do whatever you need to do. There is sometimes conflict between what we want to do and what we 'should' do. These 'should's may come from others expectations of us, or what they think is best for us. Or they may come from ourselves, what we know or think would be best for us. Why don't we 'just do it'?  Too much effort, too much pain, not enough incentive... or just plain old fashioned 'I don't wanna'.    

Sometimes we need to call on the 'parent' aspect of ourselves to override the protests of the 'child'. Ask yourself what a good friend who cares about your well-being would advise you to do. That is likely what your 'parent' aspect would advise you as well. Look at the big picture, not just how this decision will affect you immediately, but how it will affect you in the long run. If your 'child' is protesting, you have the choice of going along with the 'child', or with the 'parent'. Which do you choose?

To Flu Shot or Not To Flu Shot

Every year there are discussions on the Sjogren's email lists (www.dry.org) about whether we should get flu shots or not. There are also discussions on the pneumonia and shingles vaccines, and about live vs. 'dead' vaccines. The following are my thoughts and experiences, not to be confused for medical advice. Consult your own doctor regarding your own needs.

A couple of weeks ago, I felt a little achy in every muscle for a couple of days. Keep in mind that this 'little achy' is on top of my usual aches and pains, which adds up to a rather 'beat up' feeling. I had gotten my flu shot. Working in a hospital, I get such shots free, which helps. I have never before had a systemic reaction to the flu shot, usually I get varying degrees of stiffness, pain and swelling just in the arm where I got the shot.

The pneumonia shot a few years ago did give me a systemic reaction.  I had fever, chills, aches, which lasted several days. This was much better than getting a full blown case of pneumonia. Still, if I need another in the future, I will discuss this reaction with the doctor to find out what they recommend.

Some people would rather take their chances of getting sick than subject themselves to a shot, and the financial cost is a factor for some people as well. Why is this subject such a big deal on the Sjogren's email lists? Sjogren's Syndrome (Or as it is being called more and more these days, Sjogren's Disease), is an autoimmune syndrome. Our own immune systems misguidedly attack our moisture producing glands. Some people misinterpret this as our immune systems being overactive, rather than misguided. They may be afraid that their immune system will over react to the flu shot, and make them sick, or trigger a flare. Everyone is different, and how each of our bodies react to the vaccine will vary.

For some people with Sjogren's Syndrome, there is another factor that comes into play in this decision. Many people with Sjogren's are on Plaquenil or Methotrexate, or other DMARDs. That means that they are disease modifying anti-rheumatic drugs. These medications suppress the immune system, and by doing so, decrease symptoms. People with suppressed immune systems need to be more careful in exposing themselves to potential infectious substances. My own understanding is that most vaccines, made from dead virus cells, are fine for them, but vaccines made from live virus cells should be avoided. That means the flu shot is okay, but the nasal spray flu vaccine (made from live cells) is not. (this is my understanding, I could be wrong).

Many people get little or no reaction to vaccines.  If they do get a reaction, it is usually mild, and lasts 2-3 days, which is much better than the week or two that the flu lasts, not including any residual symptoms, secondary infections, etc. Besides that, the flu is more than just achy muscles. It is fever, headaches, coughing, fatigue, etc. My thought is to get it once, see how you react, and base future vaccination decisions on that response. (I am still not your doctor, this is only my personal opinion.)  If you are trying to decide whether or not to get vaccinated, your doctor would be a good person to ask. Whatever you decide, take care of yourself, and stay warm this winter.

Motivation

My most recent Chronic Illness/Chronic Pain Support Group meeting was on 'motivation'. I only had two people there that day, and neither could identify anything that motivates them. Living day after day after day with pain and illness can be very wearing. I have taught this topic on the inpatient psych units where I work, and have never gotten this response.

I generally spend 6-8 hours preparing for my support group meetings, doing research, and putting together a 2 page handout defining and discussing the topic, with suggestions for applying it in life.  In researching the topic of motivation, most of what I found was on the level of motivating yourself to write your next book, or run a marathon. I searched for info on motivating yourself when you are depressed, and even much of that was on a different level from what I needed. 'Find something that excites you' is a great idea, but how do you do that when just getting up to pee is too much trouble or causes so much pain that you don't do it until absolutely necessary?

At its very basic, we are motivated to increase pleasure or decrease pain. There are several reasons for lack of motivation, the one we focused on was 'The benefits of staying put outweigh the benefits of moving (at least in our mind)'. One way to counteract this is to 'List the benefits of each option. Don't forget such benefits as comfort, and not having to take responsibility. How can you decrease the benefits of staying put, and increase the benefits of moving?'

Here are some excerpts from my handout on motivation:

Strategies

• Set up if/then propositions. 'If I get up, I will walk.' 'If I see a Starbucks, I will ignore it.' This takes the decision making out of the loop, and the most likely option is to following through.
• Plan ahead for slip-ups. 'If I can't ignore the Starbucks, I will change my route to avoid it.'
• Beware of the 'what the heck' factor: eg- “I ate one cookie, I already ruined my diet, so what the heck- I might as well eat the rest of them.” Plan ahead for how to handle such situations.
• Record your successes, and what you can learn from your failures.
• Get an exercise or diet partner (or partner for whatever it is you want to pursue). Having someone else involved makes you more accountable.
• The more you do what you set out to do, the easier it gets, and it becomes habit.
• Treat depression- it saps energy, motivation and hope.
• 'Just do it'. Do anything- wash the dishes, clean off your counter, anything that will get you moving and accomplishing something. The feeling of accomplishment is motivating.
• Make a list. Prioritize and choose one small task to work on. Focus on completing that task before taking on the next. Set a goal that will be quick and easy to reach, and go for it. Reward yourself for reaching it, to motivate yourself to take on the next goal.
• Break a large goal up into smaller, more manageable steps. Just focus on the current step. Give yourself appropriate rewards for each step, not just for reaching the full goal. eg- everyday that you stick to your diet, put a quarter in a jar. At the end of 6 months, you will have lost some weight, and will have $45 to buy yourself some new clothes.
• Visualize the benefits of working on and reaching your goal. Act as if you are there.
• Work on your goal at least a little bit every day. Remember the 'what the heck' factor: If you miss one day, don't use this as an excuse to miss another, or to quit.
• Exercise will give you more energy and improve you mood and focus.
• Set up your environment to avoid triggers for habits you want to quit, and to encourage habits you want to acquire. 

Willpower requires active focus. It will not work to break a habit, because the active focus on the issue makes it more likely you will do it, not less likely.  In order to stop a bad habit, you need to replace it with something else. It is much harder to change a behavior if you feel deprived.

I hope these ideas help.  We never did solve the problem of how to motivate yourself when even getting up to pee was difficult.  I think the key is that you have to decide that you want to do whatever it is, and then find a way to make doing it more attractive than not doing it.  Look at the benefits of doing it.  Then do it, and praise yourself for doing it.  Even if it is just getting up to pee.  Ahhhhhhh!

How Do I Know What to Do?

It seems that sometimes I live with a problem for quite awhile before  it occurs to me to try to deal with it.  It especially happens in regards to health issues.  I think that is because I have so many things going on that I hope some of them will just go away.  I know there are times that the first time I say something to my husband about an issue is two or more weeks after it started.  He is very patient with me, but I don't want to over-burden him with my issues. 
NOTE- The following should be viewed as suggestion, not as medical advice.  Use your best judgment, and follow your doctor's instructions.

So how can you tell if a pain or other issue is worth pursuing?  If it is new and severe, or disrupts your ability to function, seek help right away.  If it is a symptom you have been told to watch out for, follow your doctor's instructions (eg- if he said call me right away, do that).  If you have a change in medication, hold on to the insert that comes with the med., and watch for any of the symptoms listed for allergic reactions, and follow instructions.  If you are unsure what you should do, (stop the med, go to the emergency room, etc), call your doctor right away.  Anything that feels life threatening, of course call '911' or get to the emergency room. 
If you have a new pain or other symptom that is not severe, take note of it, and see what it does over the next week or two.  If it gets worse, go to your doctor.  If it seems to be getting  better, let it run its course.  If it stays the same, use your judgment regarding how much it bothers you, and how important you think it is to your health. If it is a familiar symptom, either something that went away and came back, or showed up in a different body part, you are probably safe in treating it as you have treated it in the past.  If it needed attention from a doctor in the past, it would likely need the same attention now.   
Find a local or online community of people who share your particular malady(ies).  I have found the Sjogren's Syndrome email list (SS-L@LISTSERV.ILLINOIS.EDU) to be invaluable as a resource for information on symptoms and treatments.  Just remember that any online community should not take the place of personal medical care.  It is a place for people to share their own experiences, which may not be the same as your experience, and knowledge, which may not be accurate.
This all boils down to learning what you can about your particular health issues, being attentive to changes, having a community you can consult, and, most important, using good judgment regarding how to care for your health.

Be Happy and Thin- In Moderation

I read recently about a study that showed that people who were happy lived longer than people who were thin.  (Sorry- I can't find the reference right now.) To some people, that may sound like a good excuse to stop the diet and exercise routines, and just have a good time.  My thought was, "Why can't you have both?"  I am sure there are people out there who just naturally have both.  I used to be one of them.
I think I am already a fairly happy person.  I don't let things get to me much.  I want to focus on the getting thin part of the equation.  I have been talking about dieting for a couple of months now, but all kinds of things got in the way of my resolve: vacation, holidays, family gatherings, etc.  Good excuses all, but I could have stuck to my diet better if I had really tried.
So, about that idea of being happy and thin?  My answer is: Moderation.  Many 'How to lose weight ' lists say that cutting out things like soda, fancy coffee drinks, and the like will save you excess calories.  One of my readers posted a comment recently and stated she had lost 10 pounds by cutting out drinking milk.  That is a great way to drop pounds, and fairly easy, especially if you replace whatever it is that you eliminate with something else more healthy.  My problem is, that I already eat healthy, so I don't have much I can cut from my diet.  I recently started to go without my juice in the morning.  I figured that I eat plenty of fruit, so I don't need the nutrients I would get from the juice.  That is a start.

Eating gluten free helps me somewhat, because I can't have cookies, cakes, etc. that always seem to be appearing at work and social events.  Following a gluten free diet does have its hazards, though.  Gluten free bagels, bread, etc., tends to be more calorie rich than the gluten containing equivalents. The answer?  Moderation: eat less of it. That is where the idea of being happy comes into all this.  Instead of depriving yourself of something you really want, eat a smaller portion than you normally would take.  Don't take seconds.  This way, you get to enjoy whatever it is, but you also take in fewer calories than you would have.  Your rate of losing weight will be slower this way than if you were on a strict diet, but most people are more likely to stick to this kind of diet, and be happier than if they were depriving themselves.
This is a situation in which you need to know yourself.  Some people are not able to control how much they eat of something they like, and may need to avoid it altogether.  When I go to a restaurant here in the US, meals are usually huge.  I often take home at least half of my food to eat for another meal.  If you have tried to do this but consistently fail, try asking for a box before you eat, and set aside part of your meal.  If you still can't keep from eating the whole thing, try ordering smaller meals, don't go out to eat so often, or just accept that this is one area you can't control.  Occasional indulgences may be necessary for the 'being happy' part.  Just remember- moderation.
In general, if you take in fewer calories than your body is used to, and/or increase activity, you will ultimately lose weight, though not necessarily rapidly.  (Science is finding that this is not exactly true, but that is a more complex discussion than I can provide here.) Eat what you usually eat, only less of it, especially the unhealthy stuff.  Replace unhealthy foods with more healthy alternatives.
Many people find that having a partner or class makes exercise and dieting easier and more fun.  Take care of your health needs, but don't let this be your main occupation.  Make sure you include ways to enjoy live in your daily routines.  Practice an attitude of gratitude. 
Remember- being thin will not make you a happier person.  You can be overweight and still be both happy and healthy, and you can be thin and be sad and unhealthy.   Weight and happiness are not really related.  The message I am trying to send is that you can work on losing weight without making yourself miserable. Just remember- moderation.