E + P = E…Be Kind! 

Take out a sheet of paper because I want you to draw 2 circles. One circle should be at the tope of the page, and the second circle at the bottom of the page. Label the first circle “E”, and the second circle “P”. Now, for the circle labeled “E”, you will make it a pie chart containing separate slices for everything you need to accomplish tomorrow starting from the minute you leave your bed until the time you return to bed for the night. All of these things will make up your Energy Pie Chart, because they are items that require your energy. For the second circle labeled “P”, you will create another pie chart making separate slices for everything that will require you to exercise patience tomorrow. All of these things will make up your Patience Pie Chart. Finished drawing yet? Look at your artwork. What do you think? You are likely wondering why I had you engage in this exercise, right? Well, I am so glad you asked.

I did this myself a few days ago and was completely surprised by a few things. First, I was surprised at the amount of things that required my energy on a daily basis. Second, I was surprised at the amount of things that required my patience on a daily basis. Specifically, I was surprised and saddened by the types of things that required my patience. My Patience Pie Chart consisted of things like “rude comments from strangers regarding my appearance”, or “long lines in the bathroom when my stomach is yelling”, and “evil eyes from waiters or waitresses when I ask about ingredients or deviations from the menu”, and “death stares or questions from family when I decline their food”. Lastly, I was surprised at the correlation between my energy and patience.

The more I looked at my two charts, the more I learned about myself. I started reflecting on previous days that matched the charts to see how I responded to things or situations. For some reason, it did not register to me that when my energy level is low, so is my patience. While this is actually a pretty easy concept to grasp conceptually, it never occurred to me. But, now that I am aware of this, I can alert others and remind myself, with a simple equation “E + P = E”. It acknowledges the correlation between my energy and patience, and says when they both are on empty, steer clear! Easy math right? Well friends, I am apparently not the only person in the world bad at math.

There are no words in the English language to describe how rough these last few months have been for me. To put it mildly, they have been absolute hell. Over the course of the past 2-3 months, I started a new chemotherapy medicine to treat my Crohn’s Disease and Rheumatoid Arthritis, experienced two severe flares that resulted in unexpected hospitalizations, and missed a vacation to NYC that I planned for over 6 months. In addition to all those things, I still had to deal with the day to day challenges of living with chronic illness and pain, being wife and mother, and a working professional. As you can imagine, physically and emotionally I have been running near empty. Surprisingly though, by the grace of God, I have managed to successfully meet all my obligations…no matter how exhausting that has been.

As part of my life with chronic illness and pain, I also battle with chronic fatigue. Now, I want to slow down and make sure I adequately explain this. When I say fatigue, I am not talking about low energy or the inability to find enough energy to hang with friends or shop after work. I am talking fatigue that is so intense that simply leaving bed to take a shower requires planning with military precision. The fatigue I routinely experience makes fatigue from the flu or mono look like tiredness from a brisk walk. On a routine day, just leaving the house on time requires several rest breaks. For example, if I am required to be somewhere by 9am (I emphasize required NOT requested), I save up my energy all week by minimizing my extracurricular activities and going to bed early. Also, the day of my required 9am arrive, I have to get up at 6am. Once awake, I get out of bed and use the restroom. After that, I sit next to the bathtub on the floor for a quick 5-7 minute break. I then clean the tub and run my bath water. While my water is running, I rest for 3-5 mins in bed. When the water is done, I bathe and exit the tub for another 10-15 minute break in bed in. After my break, I sit up and lotion my body. Once done, I take a 5-7 min break. After my break, I put on my underclothes and head to brush my teeth. After brushing my teeth, I sit on the edge of the bed for a 3-5 min break. Following that break, I finish getting dressed.

Now, I am sure imagining my routine day is very difficult to imagine. Some of you may even doubt if the day I described is even possible. Well, it is and I wish I could say it is rare. Anyone with Crohn’s, Rheumatoid Arthritis, or any other auto-immune disorder can likely sympathize and confirm similar days. What’s interesting is the day described above doesn’t account for getting 2 children dressed to leave the house, which includes combing hair, ironing clothes, or cooking/preparing breakfast. Also, the day described above only addresses getting ready to leave the house. It does not even begin to address starting the actual day. Most days, frankly, I feel as if I have worked an entire day long before I ever make it to work. I won’t even discuss the shape I am in once I finally return home. I will just say that naps during lunch rather than eating are my lifeline.

I am sure somewhere in life you have heard “you never know what a person is going through” or “you never know the type of day a person has had and you may be the final straw”, right? Well that is very true. But, for individuals living with chronic illness and pain, the better statement is “you never know what a person had to do to get here, so be kind”. I am willing to bet money that anyone that has physically seen me will confirm that they would NEVER image most mornings for me look like the one described above…although my husband can confirm this without hesitation. Given this, I have very little patience for rudeness, self awarded M.D.s, thoughts on how I can improve my life based external observations with tunnel vision and no expertise, and everything else that falls into the category of foolishness. I need one thing, kindness.

Friends, there are others like me walking among you everyday. You won’t always be able to spot them, but trust me, they are there. It may be a friend, spouse, boyfriend/girlfriend, student, employee or etc. Since you can’t always readily identify them, make kindness a part of your everyday life. Always remember E + P = E…you never know what the person you are talking to, managing, servicing, or etc has dealt with.


18 thoughts on “E + P = E…Be Kind! 

  1. I’d like to add little more on the “mommy guilt” aspect.

    As both an adult child AND as the parent of adult children, I can say the following without hesitation: The quality of your parenting is judged by one AND ONLY ONE criterion: do you kids know you have unconditional love for them??

    If they do, then it doesn’t matter if you NEVER go on a field trip; NEVER bake them cookies, etc. And if they do NOT feel unconditional love from you, then doing EVERY LAST ONE of the “right” things – DOES NOT MATTER. In fact, it just confuses them, because they know that they are not truly important to you, even though you DO all this “stuff” for them.

    Beyond unconditional love, about the only other thing that matters in parenting is what kind of ROLE MODEL you are. And with your illness, you are role modeling the following things to them: (1) How to take your own well-being seriously; (2) How to deal bravely and resourcefully with difficult times and chronic problems; (3) How to reach out to others when you need help; (4) How a loving family works; (5) How to stand up for yourself in a world that may not want to listen and may treat you VERY unfairly; (6) How to give to others, while maintaining enough strength for yourself; (7) How people may be having a much more difficult journey in life than it may appear on the surface, so be kind. And on and on.

    We’ve been fed a lot of BULLSHIT that motherhood is all about self-sacrifice. Yes…of course a parent should be loving and caring. But do you want your daughters to sacrifice everything for some man (even a husband) or for THEIR children?? NO, I say – and I hope you do too!

    I think children can handle A LOT of “stuff,” so long as there is love AND the child is not expect to assume GROWN UP responsibilities. I don’t think you and your husband require your daughters to be grown ups. They do NOT have to take care of you – they have to recognize that Mommy is tired sometimes, through no fault of her own. Is that so bad? Is that a loss of innocence? I don’t think so. Many of the BEST adults had families that faced tremendous difficulties, but where they were taught strength, compassion, kindness, teamwork and love.

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    1. @Katewohio-YOU stated that PERFECTLY!!!! What you said is so very true…and a message lots of people need to hear. Battling chronic illness and pain is very tough…and even tougher doing it while being a parent and spouse. We live in a world that sends so many messages about what it means to be a good parent…even what it means to be a healthy kid that mommy guilt almost seems inevitable. THEN when you have people that remind you of what you cannot do because you are sick, it makes the guilt even worse. It is so refreshing to have people to put things in perspective. NICELY DONE…NICELY DONE!

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  2. Thank you, thank you, thank you for really telling it like it is for those with autoimmune conditions. And add to the weight of preserving your energy the guilt–for all you feel you *should* be able to do and all you *aren’t* doing while you’re trying to save your strength for the things you *have* to do. I hope you don’t wrestle with that kind of guilt, but I sure do, especially now that I’m a mother and I can’t do all I *want* to do for my daughter.

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    1. You nailed it!!! Like you, I REALLY do battle with guilt of what I feel I should be able to do as a mom, wife, sister, and friend. It is so unfair to have to literally think ahead by several days to properly save or allocate my energy. These are things that most people don’t realize…but is 100% necessary when you battle with chronic illness and pain. If I simply want to have dinner and a movie with my husband on a Friday, I spend the entire week saving enough energy for Friday. It sounds completely insane…but is very true and so unfair. As mommy I have found work arounds to still give my kiddos time and energy…but in the back of my mind I always feel like I should be doing more. We have lots of cuddle time to watch movies, but I am not able to do field trips and etc.

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      1. So glad to know I’m not alone there. At least our kids will learn some lessons about health, energy and patience they won’t soon forget, right?

        And thank you for teaching me a new way of looking at this!

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      2. I bet. They get exposed to your creativity, thoughtfulness, and empathy. They get exposed to your strength and your willingness to stand up for yourself. They get exposed to your courage. And they get exposed to your husband’s kindness and helpfulness. Sounds to me like their innocence isn’t in any danger at all.

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      3. Wow!!! I SO needed that right now! You always make me see things from a different perspective…and your timing today was perfect. I was working on a post thinking of a recent field trip I had to miss…found myself a little down about it. It is so easy to focus on what chronic illness and pain takes away or disrupts…and miss the good that somehow comes out of the horrible situation. I needed that reminder this afternoon…THANKS!

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  3. Yup. But I’m hoping that the crohn’s will give you a fucking break, and let you skip those currently necessary rest stops. Because often I can. It hasn’t always been the case (and I do have bad days). But it can happen. It did for me and hopefully it will for you.

    I’ll keep everything crossed in hopes that it does for you. Except my bowels — I try not to cross them.

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    1. You do my friend…which makes me side. I convinced myself that I was completely transparent with my inner circle, but through writing I have realized that I was not. My inner circle only saw what I decided I was comfortable showing…until showing everything was the only option.

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  4. I think I know you pretty well, so I can attest that I had NO IDEA. Thanks for taking the ENERGY to inform those who know you – and those who don’t – about the reality of living with chronic disease.

    Liked by 1 person

    1. Thank you for taking the time to read my friend. Your comment made me happy yet sad. Happy that I effectively accomplished my goal of hiding the true horrors of living with chronic illness and pain. But, sad that I managed to hide it so well that even my true inner circle didn’t see the true horrors. Being transparent is now the only option because everything else takes too much energy

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  5. sorry its been so difficult the last few months…I am hoping and wishing that the next few months will bring you some relief…joy, and peace…..I did my pie charts….thanks for the great idea…helps put life into perspective…..sending some of my extra energy……xxkat

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