This is your life

January 11
This is your life
If you could read a book containing all that has happened
and will ever happen in your life, would you? If you choose
to read it, you must read it cover to cover!

I don’t think I would read it right now.  I am not sure I want to know how it ends.  I want to live my life each day.  If I would have to read it cover to cover and know what happens before I die, I am not so sure I wouldn’t do something to change it if there was more bad stuff in there.  I want the rest of my life to be a surprise or rather to unfold the way it’s supposed to be with the bumps and bruises included.  I don’t know if I could handle it if I knew ahead of time.

Knowing the future would probably scare me.  It might make me freeze up now and not want to live life to the fullest now.

Another thing to think about

In a previous post, I reposted about you are not your mind.  Well here is number 2.

2. Life unfolds only in moments.

Of course! I once called this the most important thing I ever learned. Nobody has ever experienced anything that wasn’t part of a single moment unfolding. That means life’s only challenge is dealing with the single moment you are having right now. Before I recognized this, I was constantly trying to solve my entire life — battling problems that weren’t actually happening. Anyone can summon the resolve to deal with a single, present moment, as long as they are truly aware that it’s their only point of contact with life, and therefore there is nothing else one can do that can possibly be useful. Nobody can deal with the past or future, because, both only exist as thoughts, in the present. But we can kill ourselves trying.

 

Today I am living in the moment.  Heading to Iowa for a family reunion (not excited) and then to my 25th high school reunion.   I have not been to a single high school reunion since leaving high school.  I am not sure why I agreed to go now.  I need to talk myself into not feeling self conscious about what I look like (an old high school thought) and what people think of me (another old high school thought).  I don’t really have an explanation for what I have done with the last 25 years of my life other than live it.  I don’t have my dream job nor perfect house and family.  It’s just me  and K.  We live.  We laugh.  We love.  We mess up.  We clean up.  We live.  That’s it.  That will have to do.

So for now….have a great weekend.  See you when I get back.  Maybe I will have some pics.???

Invisible Illnesses

I have Lupus and Fibromylgia and a few others that are hard to explain but they are all dubbed “invisible diseases”.

I had heard of the Spoon Theory in describing what it is like to have these invisible illnesses but didn’t totally understand.  So I googled it and found what I was looking for.  Thought I would share it with you all.

The Spoon Theory

by Christine Miserandino http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

Support or no?

A question to any reader with a chronic illness…..  Question-mark

How do you feel about online or in person support groups?  Or even on FB, writing about your illness?

I see their purpose…giving people a place to discuss and support each other. After all, unless you are dealing with the illness, you can empathize. But a person does not truly know the ups and downs of the battle.

The problem that I see is that so many seem to be flooded with people who just want to have a pity party. Now, I am not saying that people can’t talk about what they are going through and have a little whine now and again. I do that here sometimes too. But, it just seems like some folks in this one group I have seen or on Facebook,  just don’t want to move forward. They let the illness define who they are.

Case in point. There is a group on Facebook that I have been following which posed a question about whether it is possible to live pain free with fibromylgia and or lupus or arthritis. Some stated that they were living a minimal to pain free life. Others seem to dismiss it as a pipe dream. I sensed that some seem to “hate” on the ones who were enjoying an extensive period of remission. Or, they just give up and give into the pain.

Why?  Why the pessimism?  Is it that we want what someone else has? Does it make some people feel better to make other’s feel bad about their remission? (I am curious to know from a few of my breast cancer survivor friends if this was true in their circle.)

I’ve had my ups and downs with this illness for the past 10 years (I was diagnosed in 2003).  I’ve been in and out of remission so many times, I often wonder when the roller coaster will end. I’ve bitched about the injections I have to get on a weekly basis so that I can function at at pain level of zero to 1 out of 10. I will not give up the fight.  I am going through another bout of a huge flare right now.  I see the rheumy in a week.  I don’t know what my next few weeks will hold or how many injections or times I will sit at the cancer/hematology center hooked up to some “stuff”.  But I am not giving up.

And, I certainly will not scorn a person’s ability to enjoy pain free living. That’s what we all want, right?

My late Friday letters (again)

Here are my late Friday letters again….maybe I should call them Saturday letters instead.  Friday was busy this week with doctor appointments and stuff like that, that when I got home, I just crashed.   But anyways….here they are:

K:  So proud of you for having a good week in school and making it through you MCA tests and not having a meltdown.  Way to be a 4th grader!  I love you always and forever!

to my mom:  thanks for calling me almost every night just to check on us.  you mean the world to me.  2 hours away from me seems just too far sometimes.  some days I wish we could just get together and have coffee or soda’s or something

to Brooke;  thanks for canceling dance….the ice really sucked on Thursday

to Kelly;  your eagle eye is killing me…..work isn’t as fun when I can’t be myself anymore

to Karen, my BFF – congrats on getting your certification back and becoming officially a drug and alcohol counselor in Kansas again….wooohoo and happy dances for you!!

to Dr. Cunningham and Dr. Orvidas – thank you for taking good care of K this week.  You guys are great docs.

happy-saturday-0516

You need to know

As I have been doing life for these some 40 years, and working at this elementary school…..I realize there are some life skills that everyone needs to know:

Ability to listen to what you least want to hear:  Sometimes friends, family and sometimes even strangers we meet, lose their minds and tell us what they really think about life and sometime about us!! Sometimes it’s on purpose, and sometimes it just burbles out due to frustration.   In response, we can smile firmly and say, “That’s something to think about!” (While listing in our heads all the reasons this person is wrong, so wrong). Another option? Agreeing with them for a split second, only to go home and suffer a case of spontaneous emotional amnesia or spew at your family like kids or even the dog.

We don’t have to do anything about this terrible, crappy piece of information. But we can just sit there and get used it, sort like how you got used to a college roommate who yelled all night in her sleep and stole your clothes out of the closet. It may turn out that you disagree with her particular opinion, but even so, it improves you when you know about it, because this is how somebody other than yourself sees the situation.   Maybe it’s either time to get some distance from that jealous, unkind person or to understand that fear or love sometimes clouds her judgment. On the other hand, you may also end up agreeing with her, which is when you get a chance to listen to yourself—and decide what you want to do about taking some action.

The ability to dismiss “round” one – Round One—whether it’s meeting a friend for the first time or dating somebody for the first time—is exactly when things are most likely be completely awkward, unnatural and even discouraging. Nobody knows what they’re doing. Unfortunately, it’s also the time we’re most likely to toss off a judgment and move on. Those of us who master giving everybody a pass on this chance meeting,  are the ones most likely to progress to Round 2 and Round 2002—which are the times when both of you are fully accepted and understood, bad jokes and all.

The ability to cook one thing with cheese – Most people show their love and appreciation with baked goods.  Nobody dislikes you after a chocolate chip cookie. However, there are also people on this planet that can’t bake—an activity which requires precision with measuring cups and a little stamping tormenter in your brain who will not let you blow off the word “sift.”

For years, I tried (and failed) to master cheesecake. One day, I said to myself: “Why am I making this stupid cake? I can just buy it at the Cheese Cake Factory!”  A little Roman candle of understanding blasted through me: “I don’t like making a homemade cheesecake! I like macaroni and cheese! I like lasagna!”

You can’t create what you don’t dream of—mostly because creations come out of your most intimate desires. Learning to cook a really delicious, decadent thing for others is not just a way to show your affection—it’s a reminder that when you do what you love, you pretty much always do it with excellence.

The ability to recognize the voice in your head – You know the voice, don’t you? It analyzes what you did and didn’t do. Then it analyzes what other people did or didn’t do. Then it complains why everybody else has pulled it together except for you. Then it tells you to worry about your car dying or your kids getting hurt or your losing your job due to a sudden downturn in the world economy, which hasn’t happened yet but will. Then it says you’re wasting everybody’s time by being worried. That voice is your ego talking. The sooner you can recognize that voice for what it is—your thoughts on your life and not your life—the sooner you can start actually living.

The ability to have peacefulness – I’ll admit it: I haven’t mastered this one yet.

Peacefulness is still an illusory thing for me. I imagine it as something similar to how you act when you’re with somebody who you really love and who loves you back. With this person, you’re not concerned with your hair; you don’t have to adjust your tone of voice or your sandal strap. You’re not on stage. What would it be like to be this way when you’re all by yourself?

The ability to whistle with your fingers – There’s no real advantage to this one. Other than it’s sexy. And fun.

The ability to power whisper – A kindergarten teacher I work with,  looks out across the crowded, paint-flecked insanity of her classroom, ring a little bell and whispers, “Come, children.” Instantly, all 25 raging 5- and 6-year-olds run up to the carpet, sit down and go completely silent. When you think about it, it makes sense. Why wouldn’t these kids behave this way? They’ve had plenty of people in their lives yelling at them to brush their teeth or to stop hitting their brother. Whispering was different, and so now it is interesting.

The same holds true for grown-ups. We live in the age of the screaming TV, the beeping smartphone, the blaring car alarm. Lowering your volume gives others the uncommon and wonderful pleasure of leaning in to hear what’s being said, of being invited (not ordered!) to pay attention. You want others to want to hear you.

The ability to give a compliment that is not appearance based – Who doesn’t do it? We see people we like, and we tell them we love their haircut or their sundress or their house or their beautiful German shepherd. It makes them feel good. It makes us feel good for making them feel good. And probably, the reason why we engage in this activity to begin with, is that we like the person, and when you like somebody, so much of what they buy, wear, arrange, choose and look like is fascinating.

On the other hand, telling somebody you admire how she kept her self-control and didn’t yell at her daughter after knocking an entire 3 pound sack of sugar onto the floor, or that you loved she explained to the cashier that they didn’t give her the right change back, takes just a bit more effort—and observation. It results, however, in somebody having one of the most amazing experiences on the planet—being seen. When you do this, you prove to them that all that stuff they are doing inside, all that trying to be the best person they can be (despite their past, their flaws, their doubts, their occasional total meltdown) is not hopeless.

 

May 16, 2012 – Mental Confidence

I have been struggling a lot lately with trying to be in control of EVERYTHING around me.  Somedays  it really feels like life is spiraling out below me or around me.  I am taking a couple classes at Argosy University this summer term.  Not really hard classes except busy.  Research Methods is killing me  LOL.  But I am in control right?

I am looking for a new place to live.  Money is so tight.  But also I received a call today for a second interview at the dental office I applied at.  Good.  But makes me more busy.  K will be out of school on Monday next week.  So soon she will be up here with me.  But I have to get the apartment and job.  But….I can’t control that.  Well, sort of.  I keep working at it.  I keep trying to get it all done.  I about drove myself insane yesterday and wanted to quit my classes.  But I went, and really enjoyed it.  Enjoyed being there and learning.

I am learning that mentally I need more confidence in myself and my abilities.  I know what I can do.  Not always sure when enough is enough, though.

There are a few things I have learned lately through my classes and even just in my life experiences relating to confidence. Confidence:

Removes FEAR (False Evidence Appearing Real) – Personal confidence can remove hesitation, which is an attribute that originates from fear.

Provides Opportunity – By removing that hesitation, you then begin to open doors of opportunity.

Builds Personal Posture – Once opportunities begin to come into your life, you begin to build your personal posture.  Similar to physical posture of sitting up straight and standing tall, personal posture is your stance and the value you give yourself, which displays a command of respect from those around you.

There are also a few things that not having enough confidence can do to you as well.   (As I have learned very well!)

Negative associations – Friends that drain your personal confidence must be avoided at all cost.  If they are not for you, then they are against you. I hate to be so dramatic, but I think you get the message loud and clear.

Excessive Media Exposure – Every day the media exposes you to a large quantity of negative news.   If left unchecked, this negative bombardment can creep into your subconscious and make you feel as if you are part of a chaotic world of which you have no control, which could not be further from the truth.

Negative Self Talk – If the voice in your head was an actual friend, how long would that friendship last? I think this speaks for itself.

 

You know we are all one of a kind.  We are unique.  Spend time each day settling your mind and opening your heart to your source. Let go of your limited thoughts and abilities and accept the peace of omnipotence and omnipresence from God. Don’t allow your own limitations to limit God in your life.  Share your joy with others.  If most people are looking for happiness through luck or happenstance, show them the power of real joy available in every moment.  Live by example and share the power of joy and bliss by living lovingly, peacefully and positively in this world. If you want to see joy in this world, then it must start with you being joy in this world.  This is what I am trying to do everyday.  I want to be an example to my daughter and my friends.  It needs to begin with me!!