Sunday Morning Coffee Musing:RD/Fibro Blog: I Want to Play, Too

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You remember what it’s like to get sick as a child and friends are outside playing. You hear the laughter, you see them running around playing a game of hide and seek, or playing with their superheroes or dolls. You say to your mother, “Mom, I want to go outside and play, too.” She says, “I know honey. But, you can’t. You’re sick and you have to get well first.” So, there you go. Back to the window to watch your friends play. Until you feel well again.

This is exactly how I feel many times as I watch the events of family, friends, and other events that play before me live and in living color on social media. I sorely wish I were there, too. Creating memories. Laughing along. Right there in the moments captured forever. Especially, the very big moments and events. I and so many others who live with chronic pain also live with unpredictability of the symptoms. And there we are. Trapped in the house, until the symptoms subside enough for us to go out to play again with everyone else. You may be disappointed and you probably understand. But no one, and I mean no one, is more disappointed and upset or even as angry as we are. We are many times at the mercy of a body we cannot control. And, for the record, many of the other times you see us out living it up, selfies and all, we are smiling and playing through the pain. Tough guys and gals we are indeed!

It makes me happy to see others happy and enjoying life. I know I will be there in the moment soon again. When you realize it’s not about others or you and your pain all the time, but it is collectively about sharing in the joy and laughter of others lives that fills your heart whether you are there physically or through videos, listening to the stories behind each memorable moment and looking through photos. Energy is energy and sometimes you have to experience it at different frequencies. Accept and embrace. Sad that I can’t be there? Yes. But the happiness that you are there, friends and family are there, enjoying life is greater than my sad moment…that shall pass.

~Nikki

 

Sunday Morning Coffee Musing: In It’s Time

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Maybe your situation and circumstances are not so beautiful at this time or maybe, like me, it hasn’t been for a very long time. Know that things will be beautiful in it’s time. When it’s time. I am sure a caterpillar may not fill pretty during this phase of its life (can’t say for sure since I don’t speak butterfly, but just taking a guess here), but in it’s time…when it’s time, it is made beautiful. If only it/we knew we are beautiful in many ways in each phase of life. You may not feel it or look like it, but you are to the Creator.

Even in the hard times, the incredibly painful times of my disease and illnesses, I have strength and hope. Even if I only have them in the back of my mind or an afterthought. When I pull through those things, I am made aware of my beauty. Strength is beauty. Hope is beauty. You may not have gotten to this point yet, but when you are made aware of your ability to live anyways, to press on anyways, to rest even (it says you care for your body, and that’s beautiful), you will realize many things can be made beautiful in it’s time. When you become aware…it’s time.

However, there are some situations that take more than awareness of beauty. I find this for me, the waiting or searching for one to connect with on a personal and intimate level. It’s an ugly process for some of us single people. Hoping, searching, waiting, discerning, disappointment….etc…and well…you can find beauty in the fact you don’t give up. Or you can know that in due time, all of that will be made beautiful. If by the one coming along or by you realizing life doesn’t have to be stained by you not finding one or one finding you. Overall, you’ve had plenty to be thankful and grateful for and life has been beautiful because it is life, not because he or she “found” you.

~Nikki

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Before You Get to the Edge. RA BLOG

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What do you need to do as a person with a chronic illness or dis-ease before you get to the the edge? The breaking point? The split second before bad attitudes, mean words, a frown forms across your brow, and just plain funk kicks in making your home or work atmosphere an unpleasant place. Before you have to “back track” and make apologies, amendments, and atonements, here are two question that may help you. But first, let me explain how this came to me this morning.

After my second night of restless sleep, I laid there pushing myself to get up or my daughter would be late for school. I slept with the breathing machine on (CPAP machine) and it was annoying all night. Tossing and turning with the “so and so” cord tangling around my arm and head. The wisp mask, even with the soft, light rubber around it, was hurting my face because fibromyalgia was awake, too. When I finally snatched it off this morning, I was tired before I got up.

When we have restless or painful nights it can make us feel defeated before we even roll out of bed. Defeated, before we get our day started. It can make us pessimistic, angry, moody, and we can began to bark out in frustrations to family, friends, significant others, children, and coworkers. I sat up on the side of the bed and thought to myself “I feel horrible. I wish I could get more sleep. Oh well.” To the bathroom, get dressed and I sat on the side of the bed putting my shoes on and I realized I was frowning. I felt heavy as I moved around. And then I asked myself a question that I already knew the answer to:

WHAT’S WRONG? WHY ARE YOU IN A BAD MOOD ALREADY? (your answer may vary but give yourself the full blown answer. Not the short answer)

Answer: I did not sleep well. I am upset that I cannot go back to sleep. I do not feel like being upbeat and chipper. But, I have to send my daughter off to school in the best mood possible.

WHAT DO YOU NEED TODAY? WHAT DO YOU NEED TO MAKE IT THROUGH THE DAY AND IMPROVE YOUR MOOD? (Your answer may vary drastically depending on the situation and day. You could be working, a full time at home parent, work for yourself, etc)

I need sleep! But I can’t go back so I need peace and quiet. I need the least amount of conflict and chaos. I can limit phone calls to and from people that are prone to give me bad news or talk too long, news and social media. I can eat a good breakfast. I can sit outside this morning for 30 minutes. Sunshine improves my mood. I can tell my daughter the truth.

Yes. Tell the people in your life the truth.

Me to my daughter: “Morning. Not to chipper or talkative this morning. Sorry. Rough night.”

Her: “Oh. It’s okay Mom.”

So before you get to the edge…

WHAT’S WRONG? – TELL YOURSELF THE FULL VERSION

WHAT DO I NEED TO DO FOR MYSELF TODAY THAT WILL MAKE THIS BETTER//GET THROUGH THE DAY?- NAME IT. LIST IT. DO IT.

AND BONUS: TELL PEOPLE IN YOUR LIFE THE TRUTH ABOUT HOW YOU FEEL WHEN IT’S REALLY BAD OR IF YOU’RE  JUST NOT UP TO PAR THAT DAY. I know we are always feeling bad most of the time and we don’t have to let people know that. However, when it’s one of those days when you wake up and can feel the ANGST check it (address it) before you walk out the door of your room.

~Nikki