Chronic Illness, Chronic Pain, Lifestyle

Go to the Bathroom

The bathroom is the room everyone goes to for relief. Sometimes to fill the quiet acoustics of the room with thought, songs or even cries. It is a place where, unless you have children or pets or a significant other, you can have some privacy as well as perspective.

E95C8F62-4CB0-488E-8ADE-A31BD5CF2602.jpegIf the klutz in me wouldn’t inevitably fumble the laptop into the water, I would have so many posts done by now. The bathroom is where inspiration hits most often and where the mind wanders toward relaxation and clarity, which is also why I don’t write posts when the inspiration hits. I don’t want to stain my free-flowing, relaxing stream of consciousness and turn it into an accomplishment. That would rob the healing that simultaneously accompanies the bathroom’s role of enlightenment.

The past couple of times that I took a nighttime bath, I had such relaxation and clarity. I was in my own little, quiet space, my own world if you will. So many wonderful blog posts came to mind! Not just blog ideas, but whole posts spilled out! Then I got out of the tub and forgot them all. Disappointed, I felt that I will never be able to write another decent post. Ugh. My mission for Life is Chronic is to relate chronic illness problems with problems not specific to people of the chronic illness lifestyle.

But, damn, who wants to spend t7A9CA1B4-C84E-4DA1-8A33-EC1A4763DFDC.jpegheir lives defining their lives by concentrating so much on their limitations, illness or not. I feel like the first half of my day is being spent just getting to the point where I can be functional. I beat myself up for being at the mercy of my own body.  I mean that I seriously dwell in blaming myself for not being able to put mind over matter and just make myself well. I know, it sounds stupid. It is stupid.

After the immediate and initial visit of day to the bathroom is relieved, I must convince my ego that I am a contributing member of society. So, I do the dishes. Then, I wonder… what other chore can I do before eating breakfast? Breakfast is a reward for proving that I am still useful. The bath following breakfast that helps the stiffness shut up a little is often an essential part of my day. My bath is my place to start my day all over again, the place to acknowledge that I am being respectful of my body, respectful of my life. I have life to give. I have life to live. The soak in the bathroom has hopefully prepped my body’s stiffness for yoga. The stiffness and pain meet yoga, giving respect to the day and, give in to the world a better chance to know the me I intend to be.

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Upon reflection: We all may benefit from using the bathroom more often.

Life, it’s chronic. Thanks for reading!

Wendy

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Chronic Illness, Chronic Pain

New Day, Everyday

New Day

New Year

Still Spooning

Still in Love with Life

Stop Searching for a Cure

Start Searching for Acceptance

Give Yourself a Renewed Eye for Seeing the Awe of it all.

Get Peace from the World by Removing Expectations.

Have a New Year Full of Gratitude, Peace, Kindness, Patience and Love!

Life, It’s Chronic.

 

Chronic Illness, Chronic Pain, ME

Denial is the same as a lie.

Truth bomb!: I have been living a lie.

I have been in denial that I am as sick as I am. I am probably as well as I am ever going to get. I have Myalgic Encephalomyelitis.

I have been trying to place all of the blame on fibromyalgia pain, because people can understand pain. Well, maybe fibromyalgia pain looks like a hoax to people because they see no injuries, but at least pain makes more sense to people than Chronic Fatigue Syndrome aka Myalgic Encephalomyelitis. People say, “Oh, yeah I am fatigued too…” Chronic Fatigue Syndrome is such a misnomer. It should be called Chronic Crash Syndrome. My body just is not going to recover from whatever virus or whatever is was that hijacked my nervous system and immune system. There are days I feel less sick, there are times I use all of the energy I can muster just to act, function and socialize like ‘normal ‘ people. I act fine. I enjoy acting fine, because I get to feel alive, included, normal. It takes everything out of me and I go back home and try to rest. A day or two goes by and then my body crashes. It is like trying to function with a never-ending flu. You’re worn out, weak, can’t eat. You have to crawl around because it is too strenuous to walk. How do I explain to someone a sickness when I don’t ‘look sick’? 

I have tried to dismiss ME/CFS for years- blaming myself for not being able to recover from physical or mental exertion. After cancer treatment, I attended a Livestrong program at the YMCA, designed to help recondition and strengthen our bodies. I slowly progressed every Tuesday and Thursday for an hour. I did gain strength. I did gain endurance. I did that and crashed the rest of the time, the rest of the days. Several months after the two month program, I am still paying the price. It turns out I am sicker, not stronger than before. I now sleep more hours than I am awake. Grocery shopping and running errands for a day will wipe me out for two days.

Damn. Trying to get stronger has made me weaker. Duh! You wouldn’t tell someone who is down with the flu to exercise more so they can have more energy and get out if bed! Yet… rest doesn’t make my sickness ever go away.

People with CFS/ME can drop heart and lung function after 15 min day one test because WE DON’T make energy right and can’t recover overnight. Who CAN recover overnight and do same on 2nd day as first day? – people with heart disease, lung disease, cancer, MS and almost anything else. But not us.

I really wanted to write a blog about life, without making my sicknesses the only subject. There is so much more in life. I know my sickness is my permanent lifestyle. It has taken me almost 15 years to come to grips with that fact. I am done blaming myself for my days being an uphill battle. If anyone could have won this war, I think it could have been me. I give up. I surrender. No more fighting. You get what you get and you don’t throw a fit? I don’t have the energy to throw a fit.

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Life, it’s chronic.

Thank you for reading!

Chronic Illness, Chronic Pain, ME

Chronically Ill People Do Not Blog

I am beating myself up for ever thinking that I could be consistent with blogging!

It is hard to express myself when I am so tired all of the time. It is hard to advocate for myself and others. I want so much to help people. I have friends, but I am not a very good one. I don’t have the energy. I have the love. The ME/Chronic Fatigue Syndrome has been very persistent the past months. Not just dragging myself around, but sleeping no less than 12 hours per day. Laying around most the rest of the day. Fibromyalgia is flaring up. The migraines are under control, though.

I cry. I do. I want to be more for other people. I want to do more. My husband is the sweetest, most patient human being. He says that I am not the best human-doing anymore, but I am a wonderful human-being.

automotive, Chronic Illness, Chronic Pain

Windshield Fairies for my Birthday

Nobody gets by unscathed, no matter how well maintained. We were meant to break, but we were meant to kindly build each other back up. That’s what my birthday was like, because my husband is my rock.

My family’s cars have been used and reused. They are in a constant state of repair.  We have four. I know, it’s ridiculous. My husband’s day job is managing information and programs for a major air conditioning company. His night and weekend job? Maintaining our vehicles. My day job is managing my body and energy. My night and weekend job? Feeling guilty about my day job. I know, I have to get a better job.

Happy Birthday to me!…. For my birthday, my husband scheduled time for auto glass repair technicians to come to our home to replace windshields on the Honda and the Chrysler. Yes, for my birthday, on my birthday. It was one of the best presents I could have asked for. I had gotten so sick and tired of  hearing myself nag to my husband about the cracks that go across both windshields. I have been nagging for a couple of years now. I can still hear my annoying, whining voice in my head, squawking about that windshield. I was equally annoyed by his continual retorts that it wouldn’t be worth it, because the vehicles probably wouldn’t make it through another Wisconsin winter anyway. So, should I wait until winter for it to crack apart and crash onto my lap? Call me crazy, but driving down the highway with thousands of cracked windshield cubes on my lap in subzero temperatures is not my idea of fun. I may be a Green Bay Packers fan, but not one of those crazy ones that wants their eyes frozen shut as they drive down the road. That would be very unsafe. So, after a couple of years of whining, he scheduled to have them repaired. On my birthday.

Happy Birthday to me!… The day before my birthday I took my migraine pills, cursed fibromyalgia, tested out a magnetic bracelet for pain relief, wondered how much of my fatigue was a part of cancer treatment recovery,  slept away the day and held my breath to see if the windshield fairy truly would come. By day, my husband Mike was working and making meals. By night, he had pulled the Honda into the garage to make another dream come true; Mike would fix the brakes on the Honda so that our son can drive to a new high school, out of our district, to pursue the educational experience he dreams of. Meanwhile, Jake, our son, drove the Focus back and forth to the city for auto parts.

It was 8:20 p.m. when I woke up to Mike saying that he had to leave. Jake had been in a car accident and that Jake said he was alright. He had been hit while turning by the auto parts store. Knowing that Jake was alright and that Mike was there for him, I decided to stay in bed and rode the struggle bus with my headache and nausea. Texting and waiting to be texted, I worried. Somehow, they still had managed to get the parts for the brakes before the store closed at 9:00 p.m.. The guys got home safely and I convinced my husband to wait until morning to get the Focus towed home. He had had a long enough day. 

7F13C5BE-312D-40C5-B935-2D7B97A3A253The next day was my birthday. I felt a little better. Slow, but steady. I ate. Mike took the Honda with its new brake drums to meet up with the tow truck driver and the Focus in the city. As rain sprinkled through a sunny sky, the windshield fairies arrived in my driveway, prepared their work area and tools, then swiftly got to work.

Windshield fairies don’t do brakes, which is unfortunate. Although Mike had fixed the brakes on the Honda, he had to drive home with only the emergency brake. He had done a fine job of fixing the brake drums, but the fix had fixed so well that the increased pressure broke the rusty brake lines.  Mike made it home safely to our driveway where the two grown fairies stood with their work truck for an extra hour. Patient and kind were they.

Two broken cars, a tow truck and Mike made it back home safe and sound. And the magical auto glass specialists were there ready to make our road views anew. After they had fluttered around and buzzed on their cell phones for an extra hour in wait to once again work their magic on another windshield, we filled the garage with the Honda, that apart from the broken windshield we thought had been fine that morning. The tow truck crane gently took the smashed car to a second rate spot on the lawn. Sweeping into the garage, the windshield fairies once again worked their magic. Mike gave the fairies an extra treat for being so kind to stick around and work their magic on the second windshield. Everyone was safe, sound, sick of cars. Well, Mike and I were anyway. Happy Birthday to me!

It still being my birthday, I rested on the couch. But, my son wanted to do something to make my day special. Bless his heart. We all sat outside in the sun at my favorite restaurant. I had a Dr. Pepper with my favorite meal. Soda is like poison for your body, yet I felt compelled to reward myself with some. A very old lady said that her secret to living to an old age was having a Dr. Pepper everyday. It doesn’t really extend your life. We capped off the day around a campfire with family and drove safely home. Happy Birthday to me!…

Within only days, there have been a couple of trips back to the automotive store and my husband has worked his own magic on restoring the brakeline. Our son’s dream of taking the Honda to his new school has come true.

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And… now we are onto the body of the Focus.

Life, it’s chronic.

 

Thanks for visiting!

Chronic Illness, Chronic Pain

Writing a Post When You are Ill.

Writing is the same as pretty much everything else when you are knocked-out ill. It sucks.

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Write that post anyway. We can not always wait for when we feel well. When we feel well, writing a post is often not at the top of the to-do list. When we feel well, we can write posts, yes. When we are ill, though, we look forward to experiencing life so that we have something to write about! I am sick to my stomach from migraine upon migraine, but I can write and you’ll think, “Well, at least my post isn’t as bad as THAT one!”

“Knock, Knock.”    “Who’s there?”                                          

Does it matter.”     “Does it matter who?”                              

No, it doesn’t matter who is knocking, illness may not let you answer.”

Illness sometimes doesn’t let much through. This past month has been a constant ping-pong game with the migraines. Back and forth. During this match, I am still expecting myself to work out, make meals, wash dishes, vacuum, do the laundry, try to socialize with family. And write a blog. The migraine won. The migraine has a mean spin on that ball! Will readers understand why I write a blog even though it sucks? I don’t know. Will readers care if your blog sucks? Maybe for a minute. When you finally feel well enough to write your post, the way you want to, you may look back and be glad that you did your best when you wrote that lame post.

Do not apologize for when you are doing the best you can. Do not apologize for the content, the sloppy grammar, the disorganized babble. You will do better next time!

“Knock, Knock.”   “Come back later when I will tell you how to be a mountain goat!”

Some other day. Life, it’s chronic.

Breast cancer, Chronic Illness, Chronic Pain

Naked Thoughts After a Mastectomy

A mastectomy made me want to take my clothes off. Why?

I sent to a comment to a photographer:  If you ever want to take some pictures of a breastless chest and scars, and a body that has atrophied, hit me up. 🤔 Seriously. 50 year old bodies still have life in them. 😁

The photographer’s response: I cannot tell you how much of an honor that would be. Just having the opportunity to meet you would be amazing. I’m for real. You and (your daughter) should come to the studio.

I did not expect such an invitation. His work was filled with younger people and professional models. You see, the photographer had become a ‘friend’ of mine on Facebook recently because my adult daughter is a model. She and her father are very photogenic. The photographer purposefully reached out to me to let me know what a professional pleasure it was to work with someone of her personality, abilities and professionalism. He couldn’t say enough kind words about her. As a mom, it is a high feeling to have strangers go out of their way to say how much they respect and appreciate my daughter as an admirable human being.

I liked his approach, so I kept following his work. Creativity. Expression. Humanity. However, I had not seen a subject of his work that had been middle-aged or older, like me. Definitely not a woman with a flat chest.

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‘Practicing’ to be photographed.

The idea of being nude in front of a camera made me absolutely cringe before breast cancer, when I still had breasts. Back in college, I briefly contemplated posing nude for an art class in college for some extra bucks, but when I imagined how much I would shiver and be unable to sit still in a cold Wisconsin classroom the idea quickly came and went. Years later, after I became ill with migraines, chronic fatigue and fibromyalgia, I allowed myself to feel increasingly resentful toward my body.

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Full disclosure: I am 48, not 50; not that it ought to matter…

Now that I have undergone chemotherapy, had a bilateral mastectomy, and radiation treatment and immunotherapy for breast cancer, I am no longer ashamed of my “chest region”. Now I plan to visit Minneapolis, Minnesota for a two hour session with a photographer to take nude, artistic photos to show the vulnerability and strength of my body and myself. Living up to the stereotype of being bipolar, I have always been possessed by the raw emotion that nature and art bring out of me. Art is an emotional and intellectual science. I am excited to find out this photographer’s vision.

Most nude pictures, drawn or photographed, are predominantly of young, toned and ultimately attractive people. I want to see people of all ages and backgrounds and give respect to the containers we carry our souls in. Via Facebook, I challenged the photographer to use me, a 48 year old woman, deconditioned from a year of cancer therapy and a double mastectomy, as an instrument in his photography. I had thought the chances would be slim, but that he may take the bait. He happily did so. Here’s hoping he doesn’t regret it.  Really all I have to lose is but a tank of gas.

Is it more or less acceptable for someone who has undergone a bilateral mastectomy to be shown nude? If I now went outside topless, would it still be indecent? Offensive? I am hoping to gain some insight from this upcoming experience. I am hoping to learn to be inspired by and accepting of my body for the way it’s made. I am working on it.

Life, it’s chronic.