Relationships Don't Have To Be Hard

Yesterday afternoon, my husband and I sat snuggled together, holding hands.  We got on the topic of why our relationship is so good.  The main thing that came up is that neither of us tries to control the other.   We accept each other as we are, and encourage each other to explore our own interests.  We give constructive feedback, but don't criticize. We trust each other, and are not jealous of friends and relationships the other person has.  We enjoy being together, whether it be doing errands, building bookcases or just being in the same room, each doing our own thing. We tease each other sometimes, but only in fun; we never cut the other person down.  We say "I love you" five, ten, or twenty times a day.

I think we enjoy being together because we aren't critical.  I think we aren't critical because we are each comfortable with ourselves, and can therefore be more accepting of the other.  I think alot of people are critical of others because they are not comfortable owning their own faults, so they try to make others look worse in comparison. We are human.  Having faults and making mistakes is part of who we are, and that's okay.   Haranguing the other person for making a mistake makes them feel worse, and damages the relationship.  

 People say that relationships are hard work.  That isn't necessarily so.  People make relationships hard by not accepting the other person for who they are. People do things that hurt the other person, all in the name of 'love'.  That isn't love.  That is jealousy, bitterness or revenge.  Love is gentle and caring, constructive and accepting.  When you say or do something to hurt your partner, ask yourself why?  Or perhaps, what are you avoiding by doing it?  A relationship like the one my husband and I share is easy, because we let it be.  It takes both parties to make a relationship like this.  We recognize that few things are worth fighting about.  We just accept our differences, and move on.  We recognize that in most situations, there is a win-win option, and that is the one we take.  

People with chronic illness and/or chronic pain often have issues with fatigue.  Why waste precious energy in conflict with others?  Accept yourself for who you are.  Accept others for who they are.  No one is perfect, and accepting our imperfections as a part of what makes us who we are is a very freeing experience.  It takes away the need to be critical of yourself and others, or to control another person.  It opens up the way for loving and nurturing relationships.     

Invisible Illness Week

September  13-19 2010 has been designated 'National Invisible Chronic Illness Awareness Week'.  They have a simple and fun way of getting the word out about this awareness week, and make people feel good at the same time.  Here's the  idea:  Get some sticky notes, any color, any size.  Write on them encouraging words, and at the bottom write 'invisibleillness.com'.  Some suggestions they have of words to write are 'Got pain? Find hope!', 'If you are wondering if someone cares, someone does', and 'Pain is a bummer, but you don't have to do it alone'.  You can write out some notes at home and take them with you when you go out, or take your sticky notes and pen with you, and write them on the spot.  You can leave them anywhere were someone else will find them, inside a magazine at a doctor's office, on the mirror at a restaurant, etc.

They will be having a virtual conference, with a 90 minute workshop each day by various speakers.  You register for the conference, then just go to the website at the designated time and listen in.  You can also listen to the workshops any time after they take place on itunes.  I also like the theme for this year's campaign: 'Each 1 can reach 1'.

According to the statistics on the invisible illness web page, one out of two Americans is living with some kind of condition.  This includes cancer, arthritis, diabetes, chronic pain and mental illness, among many others.  96% of these people have an invisible condition, one that does not require a cane or other visible sign. When you look at me, you don't see my Sjogren's Syndrome or Fibromyalgia.  You see a middle aged woman who looks healthy.  For the most part, I like it that way

I think that spreading the word about invisible illness will help everyone.  It will remind us not to make assumptions about others, and to be gentler with each other.  Go to the invisible illness week website, explore what they have, and go out and spread those sticky notes of encouragement.  I love random acts of kindness.

 

I Can

What can I do that is productive that won't stress my elbow or my knees?  I can do almost anything on my computer, because I can sit in my comfortable recliner, with my laptop computer in my lap.  I can read, as long as it is not one of those books that requires strength to hold it open.  I can watch a movie with my sweetie.  I can do a jigsaw puzzle.  I can call my sister/brother/best friend from college.  I can exercise in the water.  I can  pet a cat or dog.  I can daydream.  I can reminisce.  I can make plans for a glorious vacation I will take only in my mind.  I can eat a Popsicle or a peach.  I can listen to the birds in the trees and watch the butterflies in my garden.  I can sing with my favorite music.  I can tell a story to a child.  I can toast marshmallows.  I can stargaze.  I can meditate.  I can pray.  I can say "I love you" to the people in my life.  I can say "thank you", and "please" and "bless you".  I can practice using my left hand, and laugh at my mistakes.  I can take a hot shower.  I can get a massage.  I can I can laugh, I can cry, I can smile at a secret only I know.  I can be gentle with myself and accept myself as I am.  

I can.

Guided Imagery For $.99

I have written in the past about the benefits of guided imagery.  My dear hubby just told me about a source he found that has 200 guided imagery downloads for MP3 players for only 99 cents each.  The source?  Amazon.com.  Some are specific scenes, such as a beach or a desert island, others are for specific needs, such as pain relief, stopping smoking, anxiety, sleep, self esteem, and pre/post surgery.  There are a number of downloads that are geared towards improving performance, such as in sports.  Some are just music, or sounds such as ocean waves, others talk you through  an experience such as a walk in a forest.  I even saw one that teaches you how to create your own guided imagery.

You don't need an MP3 player, the soundtracks can be downloaded onto a computer, put on a CD, put on your IPod, etc. You can listen to a sampling of any of them, so you can be sure you like it before you buy.  The listing gives you the title of the 'song' the artist, the title of the album it is from, and the length of the piece.  The lengths ranged from about 3 minutes up to 48 minutes.  Check it out- there is something there for everyone (almost).

Just Snap Out Of It

Most people get pain for a reason, and it goes away when the source of the pain is cured.  They get sick, and get better.  They get depressed, and they get happy again.  They don't understand those of us who can't get rid of our pain/illness/depression. Theirs went away, why won't ours?  If we just stop dwelling on it, it would go away.  Just snap out of it.  (If only it were that easy!)

What if they are right (at least partially)?  Maybe we can't actually get rid of our pain/illness/depression that easily, but we can learn to change our thinking with a snap.  This is a behavior modification technique that has been around for awhile. I looked it up on the internet, found some mentions of it, but could not find a source.  Here's how it works:  you put a rubber band around your wrist, and whenever you catch yourself doing the behavior you want to change, you snap the rubber band.  The theory is that the zap of the snap on your wrist takes you out of your thinking rut, and gives you a reminder to change your thoughts/behavior.  The key is to snap it hard enough to get your attention, but not so hard that it causes bruising or lasting pain.

This technique has been used for panic attacks, anger management, obsessive thinking, self harm thoughts, and even for quitting smoking, among other things.  It works for some people, for others, it doesn't.  It won't make your pain/illness/depression go away, but it may help you to reprogram automatic unhealthy thinking patterns.  Before you start to snap your rubber band, think about what thoughts you want to get rid of, and what thoughts you want to replace them with. For example, you keep thinking, "This pain will never go away. I can't bear it another minute."  Snap your rubber band lightly (you don't want to add more pain, do you?)   and say to yourself, "I am strong and capable, I can handle anything that comes my way."  Follow this up with focusing your mind and energy on accomplishing a task.

Give it a try.  It might help you refocus your attention to more positive thoughts. People will ask you about it, which will give you extra chances to think about your thinking patterns, and what you would rather be focused on.  If your focus is on other things, it is not on the pain, and the pain fades into the background for the moment.  With practice, those moments expand, and you get longer respite.  

Should You Play With Your Meds?

Before I get into the topic of playing with meds (stopping, starting or changing the dosage of medication without the guidance of a doctor), I have to post a disclaimer.  I am not a doctor or pharmacist, and can not and will not presume to tell you how to take your medication.  I am not advocating the practice of playing with your meds, I am writing this post because I acknowledge that people do play with their meds, and often they do it without understanding what they are doing, which can be dangerous.

The two most common reasons for admission to the psychiatric crisis unit where I work are stopping medications and taking too much.  People stop taking their meds for several reasons.  They don't like the side effects, the med costs too much or they think they don't need it anymore.  Some medications cure the problem, and these medications are prescribed for a short term.  Other medications don't cure the problem, but they control the symptoms.  These medications are prescribed long term, and if you feel like the problem is gone, it is because the medication is working.  If you stop taking this kind of medication, the symptoms will likely return.

So what should you do if you think you no longer need a medication you are taking, if you don't like how it affects you, or you think you need to adjust the dosage up or down?  Call your doctor, tell them what you are thinking.  (S)he will guide you with any changes in your medication, or explain to you why changing would not be a good idea.  Your doctor doesn't know that there is a problem unless you tell them, you should work together as a team to optimize your medications.  We sometimes have patients admitted to our hospital units so their doctor can closely monitor a medication change.  Most meds don't need this level of monitoring, but do need some guidance from your doctor.

Sometimes, despite knowing that it is not the best route, people change their meds on their own.  As I said before, I can not tell you how to take your meds, but I can give some suggestions that can help you manage your meds safely.  The most important thing is to know about each of your meds: the name, what you take it for, the strength, dosage, when it should be taken, with/without food, etc.  Among the things to find out are any interactions to avoid.  Some medications affect other medications, and should be taken at different times.  Sometimes there are foods that interact, such as grapefruit juice, which interacts with several types of meds.

There are some meds which can give you rebound or withdrawal symptoms if you stop them cold turkey.  These medications need to be tapered off of slowly, some over a shorter, others over a longer period of time.  If you think a medication is helpful, but does not do as much as you want, you might be tempted to increase the dosage.  Either taking it more often than prescribed, or taking more each time you take it may increase the effect you want, but it might not, and it might be dangerous.  Your liver and kidneys are responsible for filtering out foreign substances from your body.  Increasing a medication might be toxic to your liver or kidneys.  This is one of the many reasons why having a doctor's guidance for med changes is important.    

Medications are usually delivered with a sheet of information.  Sometimes these are very helpful, but often they are too generic, and don't give all the info you should have about your meds. Pharmacists are very knowledgeable (its their job), and can answer any questions you might have.  There are websites and books that have information about meds.  I f you just take one or two meds, you can go to the website for that med, or for the manufacturer to get full info- more than you ever cared to have.  If you take several meds, it might be worth investing in a book about
medications.  Here are some popular ones.
Some good med info can be found at these websites (among others): Web MD, Rx List, Drugs.com.  Useful info includes dosage, side effects, maximum to take at a time and maximum in a 24 hr period, interactions to avoid, contraindications, whether the med needs tapering, the mechanism by which the med works and how it is metabolized and removed from your system.  Some meds are fast acting, and are effective each time you take them.  Others need to build up in your system, and adjusting the dosage up one day and down the next can throw off the balance.

When a patient comes in to our hospital after taking too much medication, we ask them why.  Sometimes it was deliberate, either a suicide attempt or a call for help.  Often, though, they say something like "I just wanted the pain to go away for awhile", or  "I just wanted to sleep". I can understand this urge.  There have been times that I felt this way.  Taking an overdose of medication can be too costly for the brief 'relief' it might bring.   Keep open communication with your doctor.  If you show understanding and responsibility, your doctor may give you some flexibility in how you take your meds. Whether (s)he does or not, you are the one taking care of your body.  Take your medications responsibly.

Just Ignore It, It Will Go Away (Sort Of)

I am working four days in a row this week at the hospital (I am a psychiatric occupational therapist).  I seem to have followed my usual pattern when I work, of getting through the first two days just fine, and hitting the wall on the third day.  The middle of the day today, towards the end of a group I was leading, I suddenly became very fatigued.  My fatigue presents itself as a very strange sensation, hard to describe.  My limbs feel heavy and a little rubbery, and I feel like I am not getting enough oxygen.  Its not a feeling of being short of breath, but more like a feeling.of needing to yawn, but the feeling is not relieved by yawning.  My head feels like it is full of marshmallow cream.

At that point in my day, I had to finish that group, I had progress notes to write from the two groups I had done so far, two more groups and the resulting notes from those groups (we write a 4-5 line note on every patient in every group),  two screens left to do, and treatment team meeting to attend.  It seemed overwhelming when I thought about all those things left to do.

So I did as I always do.  I remember that I have gotten through this same situation numerous times.  Each of the things on my list would occur one at a time, so I could focus on each one, I did not need to think about them all at once.   Some of my colleagues know about my health issues, but I seldom ask, or need to ask, for help.  I know from past experience that I can get through my day.  I focus on the task at hand, and each one gets done.  When I am with patients, I am able to focus on their needs, and set mine aside.  I doubt that any of my patients can ever tell that I am not at my best.  In fact, I may be at my best when I don't feel at my best, because I am consciously concentrating on what I am doing (does that make sense?).  I actually get some energy from interacting with them, and I finished my afternoon feeling slightly less fatiguey.  

Tomorrow will likely be about the same as today, but I will be prepared for it.  I will get a good night's sleep tonight.  As I go through my day tomorrow, I will remind myself that I am not working at all for the next two weeks.  AA has a saying that just for today I can do what would be unbearable to try to do for a long time.   If you think about trying to bear your pain or illness or fatigue for years to come, it seems overwhelming, but if you focus on getting through just today, or even the next hour or the next five minutes, it isn't so bad.  Then you can focus on the next day, or hour or five minutes.  That is how I will get through tomorrow, and all my future tomorrows.  

Chronic Pain is What I Have, Not Who I Am

There is a saying around here (and I know it is other places as well), 'If you don't like the weather, wait five minutes.'  It can be like that for our bodies, as well.  I posted last week about Cobroxin, a pain medication I have been using made from cobra venom.  At the end of the post, I said that I still had some pain at times, but no constant pain.

Five minutes later (actually, two days later), the tendonitis in my elbow flared up again.  I did not do anything extreme to trigger it, I was just pulling weeds, but with my body, that was enough.  As I have mentioned before, I tend to get tendonitis very easily, but then have a very hard time getting rid of it.   It is not as severe as last time, and I am doing my best to keep it so.  I was at my doctor's office yesterday, and he asked if I wanted another injection.  I decided to hold off for now, and try treating it more conservatively first.

I am babying that arm, trying not to carry anything with that hand, or do any activities/movements with it that I know will put a strain on it.  That meant that when I did grocery shopping yesterday, I did extra trips carrying bags in from the car only with the other hand.  I am icing the arm at least once each day, I would do more often, but I am working this week, so I am not home until after 5 pm.  I am doing some stretches that my massage therapist showed me last time.  I started taking a new anti-inflammatory medication.

Most important, I am keeping a positive attitude.   I also have plantar fasciitis in my left foot and something going on with my right knee.  None of these pains are constant, and even though they aren't severe, they are persistent.  Every step I take, every movement in bed, pain is there.   Even simple things like picking up my mug of tea, or turning the page of a book remind me it is there.  It is too easy to get consumed by pain, to let it discourage me.  It is too easy to let the pain define me, to become me.

I remind myself that chronic pain is what I have, not who I am.  It may be one of the most obnoxious things I have, but it is just one of many things I have.  It is affecting parts of me, but it is not me. This makes it easier to ignore it, to give it only as much attention as it deserves.  I know it is going to be there no matter what I do, so why should I focus on it?  When I get my mind involved with other things, the pain lessens in magnitude.  I HAVE pain.  I AM a person, a woman, an occupational therapist, an artist...

Snake Venom is Not Snake Oil

For several months I have been using a product called Cobroxin, and it seems to really work well for me. It is for chronic pain relief.  It  has to build up in your system, so does not work for acute pain.   The active ingredient, believe it or not, is cobra venom.  There are two products, a gel that you rub on the affected area for local pain relief, and a spray which you spray on your tongue for general pain relief.  Please note that this review is my personal experience with this product.  I am not a doctor, and cannot prescribe medication.

I first learned about Cobroxin this past winter from Arthritis Today magazine, a publication of the Arthritis Foundation, where it said that Cobroxin had become a sponsor of the foundation.  I have been using both the spray and the gel.  I have an area on my left arm which is hypersensitive. Usually, it burns constantly, feeling like freshly scraped skin.  I put the Cobroxin gel on it twice a day, and  the pain is gone.  I have tried several times to stop using the gel, and the burning comes back within two days.  I do still have some problems with that area of skin, it hurts when cold air blows on it, such as air conditioning.  I have to wear sleeves or a piece of stockinette when I am in AC, but at least the constant pain is gone.

I don't have as specific an example of the efficacy of the spray, but I believe it is also helping.  I have not stopped using it to see if any pain increases without it.  About one month ago, at the suggestion of my PCP, I stopped taking Mobic, (a prescription NSAID) because of frequent nausea.  I initially took Naproxin instead, but have discontinued it, and only take it for specific issues.  I have not been taking any pain meds regularly other than the Cobroxin for a few weeks, yet I do not have constant pain anywhere in my body right now.  I do still have pain in my knee if I move it wrong, and various other places at times, but I actually have times when I forget I have chronic pain issues.

According to the Cobroxin website, it has been clinically proven to treat a variety of chronic pain conditions, including arthritis, migraines and neuralgias in the moderate range (one place on the site says 2-6 on a 10 point pain scale, anothe rplace said 4-7).  Cobra venom was first used for pain relief in ancient China, and there is a long list of research references.  The dosage for either the spray or gel is 3-4 times per day initially, reducing to 1-2 times per day once it starts working.  Cobroxin is available from their website, from various other websites including drugstore.com, and at places like Walgreen's and CVS  drug stores.  The gel and spray are each around $19.95. I think it is worth it.

Make Yourself a Coping Kit

Everyone struggles at one time or another, whether you have chronic pain or chronic illness, or not.  I work part time as a psychiatric occupational therapist.  Among the things I do is teach stress management and other coping related groups. In my groups, I like to have some kind of activity, a game or craft project related to my topic.  This makes it more interesting, and gives my patients something to take home to remember the topic information easier.

One project I like to do sometimes I called a 'coping kit'.   There are a variety of ways this can be done, I am going to tell you about two ideas.  The first one is the way I do it at work.  I give each person an envelope, a label that says 'coping kit' to glue on the front, and I have a variety of stickers and colored pencils to decorate the envelope.  I put out colored strips of paper, and tell them to take as many as they want.  On each strip of paper, they are to write one thing they can do that will help them feel better.  We discuss ideas beforehand, I tell them what I have in my sample coping kit, and then I have them share their ideas with each other when they are done.

The reason for a coping kit is that, as you may have experienced, when you are really down or in pain, it can be very hard to think clearly.  Having a coping kit to refer to can be very helpful.   To identify what to put in your coping kit, think about what has helped you in the past, what do you enjoy doing that is readily accessible, what have you heard about that you would like to try, etc.  Make as many slips as you want, the more ideas you come up with, the more options you will have when you need it.  You can brainstorm over several days, and ask others for input.  Some ideas to get you started are:  take a bubble bath; drink a cup of hot chocolate or tea; take a walk; listen to a favorite CD and sing along; watch reruns of a favorite TV show or movie; read a good book; pray; write in my journal; call my sister (be specific with your ideas- identify who you will call or talk to, rather than just saying 'talk to someone').

The other type of coping kit is actual items, not just slips of paper with ideas.  Get a shoebox or other similarly sized box.  If you want to, cover it with contact paper, wrapping paper, aluminum foil, or plain paper you can decorate.  Inside the box you can put all kinds of things that make you feel better.  Ideas include nice smelling hand lotion; teabags; a book of puzzles and a pencil; drawing paper and colored pencils; a favorite small stuffed animal; a kaleidoscope or snow globe; a magazine; packets of bubble bath; cozy socks.  You can include strips of paper with more ideas for which you don't have actual items.  (For instance, you don't want to put your favorite CD in the box, and your sister won't fit.)  For both of these types of coping kits, think about what your particular issues are, and think of things that address your issues, along with things that help you fell good in general.      

The shoebox coping kit can be a nice preparation for yourself if you are going to have surgery.  Open it up at the hospital, or when you get home, and you have all kinds of little presents for yourself.  You can make one to give a sick friend.  It can be a fun outing to go shopping for coping kit items.

Finding Your Productivity Capacity

Everyone is different in their endurance and capacity for productive activity. This weekend I have been working on cleaning up a path that I made several years ago on our cabin property. I have been pulling weeds, scooting along the path on my butt to try to squash those I don’t pull. I did about 3/5ths of the path yesterday, so logic would say that I should be able to finish the job easily today.


However, it is hotter and more humid today (I feel like a nauseated wet noodle when I get too hot). Part of the path that is left to clean up is in the sun, so not only would it make me sick, the weeds are thicker and hardier in that section, so are harder to pull. On top of that, my right arm feels sore, the same arm that had tendonitis for 7 months, until a shot of Depomedrol cleared it up 2 months ago. Actually, all of me is a little sore, but miraculously less than I would have expected after the work I did yesterday. (I am not sure how to go about counting how many howevers this is.)

While I am doing the path, my husband is digging a drainage ditch and shoveling and relocating 10 tons of stone. Compared to what he is doing, I am having a picnic. One big difference in our capacities is that while he gets sore and recovers, my body doesn’t recover as readily. I tend to get tendonitis and other soft tissue damage from seemingly minor injuries, and it takes months of therapy, meds, ice and injections to get rid of it.

I decided to work on the part of the path not in the sun, where I would be cooler, and the weeds are weaker and easier to pull. The rest I would leave until another time. Watching my husband continue to work, it would be easy for me to feel guilty, like I am not doing my fair share, but I don’t. I know that if I continued to do more physical work today, I would pay for it for months to come. I know that I have worked to my capacity, and that is enough.

I know there are many people whose capacity is decreased like mine, and others whose capacity is extremely limited. If this is your situation, how do you come to accept that what you do is sufficient? Take inventory of what you can and cannot do. This can be difficult, because there are many factors that may affect your ability each day, including weather, how well you slept, what you did yesterday, etc. How much does it cost you to do more than your capacity? Are you out of commission for a day? A week? How much is too much to pay for what you want to do? There may be some things that are worth it to you to push yourself past your capacity, but most things are not worth it.

One area of difficulty for a lot of people is appearance. What will others think? Will they think I am lazy? If ‘they’ are strangers, it is none of their business, why should you care what they think? If ‘they’ are friends and family, you can try to explain this to them. Some people will understand, others will not, no matter how many times and how many ways you explain it. It is up to you how much you let it bother you. You can’t change other people, but you can change how you respond to them. You are the only one who really knows what it is like living in your skin. You are the only valid judge of your capacity. That said, you may be selling yourself short because of fear of pushing too far. Try experimenting a little. You may be able to increase your capacity by tiny increments.

Remember that you don’t have to be physically active to be productive. There are many activities that are productive that are easy on the body. Writing this blog is productive, as is writing anything that transmits information or ideas. Rocking a baby to sleep or reading to a young child is productive. Calling a sick friend or listening to a loved one is productive. Any time spent learning or teaching is productive. There are likely many things you do in a day for which you don’t give yourself credit.