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.

Chronic Illness

You Get My Best

person wearing black low top sneakers and black jeans
Photo by Nicholas Githiri on Pexels.com

If you see me on the street, you get my best smile, my best hello.

If you ask me how I am, you get ‘I’m good’.

When I am good, you won’t pity me or avoid me.

I want you to know the truth.

I want to spend time with you, but I take naps everyday.

I want to have fun, but I have to function tomorrow.

I want to make plans, but I just can’t.

If you see me out and about, be assured that it is a good day.

If you see me out and about, you are getting the best of me.

Life, it’s chronic.

Blogging, Breast cancer, Chronic Illness, Chronic Pain

Squatting With a Notebook

September 6, 2018  2:00 pm.

I am milking time before cruising to my next appointment, so let’s contemplate. Napkins are classically renown for recording enlightened, ingenious, seriously spontaneous ideas. Yet, most of mine end up in the garbage anyway. Actually, that’s where much of my writing has gone. So, I get a cheap notebook. Do you write in a composition book? Do you write in a notebook? A journal? I don’t know what a composition book is for exactly. The name of it makes it sound like whatever I write in it should be carefully composed, put together, presented. None of that elegance is going to happen right now.  Between the chronic string of car problems (the latest are outlined in my last post) and the season of back-to-school, I am compelled to pause and catch up on things that may be more fleeting. So, I bought a composition book for $.56. A notebook would have cost $1.56 and a journal costs about $5.60. Guess which one I chose for a day for introspection. Sitting in the sunny driver’s seat, parked with a notebook. A large discount store parking lot is not romantic and either is a composition book, yet I don’t care. People get out of their vehicles, free to breathe in sunny, breezy, Wisconsin September air. I can find romance in that.

Wouldn’t you know it?… Wendy just sat for half an hour parked with the headlights on! (Just a reminder: I am Wendy. If I talk in third person, then it takes some of the sting out of being reprimanded by myself.) Lucky for me, I was able to get the car started because Mike had left a jump-starter charged and in the back seat. Yes, we have that bad of luck with cars that we (Mike) has the foresight to have a charged jump-starter as well as a tire pump in the back seat.  The battery isn’t good to begin with. I let the romance of sunshine get to my head and forgot about the headlights. The jump starter worked smoothly and I am feeling so smart for starting my own car. Now the yellow check engine light is on.

September 7 2018 2:00 p.m.

Today I am back at the ‘large discount store’, awaiting a new car battery. I chose a battery with a good amount of cold cranking amps. I don’t know what that is, but I know that it means I will be able to get the car started.  The fine staff member informed me that I must wait 45 minutes to get the car in and yet  another 25 minutes for the installation itself. Really?! I suggest 15 minutes tops, but he came back with up to 25 minutes. To put a battery in a car. What the heck? I am only letting them do it because they don’t charge for it and there’s corrosion on the battery. I am not being suckered into wandering the store during the mandatory wait time so that they can take more of my money.  I just want it finished in an hour and then to pick up my son from school. The auto technician has the key. It is getting uncomfortably warm in here and I can’t roll the window down. Maybe there’s a bench outside the front of the store where I can loiter and write.

There is a bench. I think it is meant for employees, but nobody else is here. I sit with my  blubbery tummy in front of me. It’s very distracting. It’s not as if the rest of me is toned, but my belly- I can feel it move when I walk. I don’t know if it’s my reward for surviving cancer treatment and cancer or what. This sitting spot is a little bit out of the way and the parking lot next to it is, I always assumed, for employees. Overweight shoppers going to and fro in front of me. Am I assuming and making judgments about the customers? That maybe they’re parking over here to get more walking in? Perhaps they park here because they are non-conformists and prefer to separate themselves from the majority? Perhaps they feel their car is safer away from the busier lot? Now, here comes a lady pushing a man in a wheelchair. In his wheelchair basket is a mum to celebrate autumn and laundry detergent. No, I don’t mean that he is celebrating laundry detergent. But, who’s to say? He nor the lady are overweight. An average-sized lady with an averaged-sized, school-aged girl are just walking past. What is going on?! None of these people parking by the employee bench appear to be employees. Who are the people that park in this cove?

An employee is squatted on a nearby curb, tapping her phone with the fingers on the same casual hand with which she cradles her cigarette. Perhaps I took her spot on the bench. What is up with the lady on the bench writing in a notebook (or is it a composition book)? Does she come to this store for writing inspiration? That could be. This stores attracts herds of people, and brings in all kinds of which to observe. For all we know, that lady on the bench isn’t even a customer. Who’s to say? For all we know, she has quit smoking and is hanging out here simply to get second-hand smoke. All of the people by by this side lot are mysteries.

2:42 p.m.

A-ha! Another employee with a cigarette strolled by. No, I have no desire to smoke or for him to come back with the stinky, pukey air.

The lady on the bench has no boobs. I wonder if she tapes them down or if she’s had a bi-lateral mastectomy. There’s no way to tell. Coincidentally, (?), a lady wearing flip flops and a shirt with the “Hope” ribbon for a breast cancer cure strolls in front of the no boob bench lady. There’s always a good chance that someone will pass by her sporting an anti-breast cancer shirt. They are all of the rage these days. Are they supposed to raise awareness about breast cancer? Or, is it just a statement that “I like pink and also hate breast cancer”. Fucking cancer.

2:51 p.m.

They have 20 minutes to get my car battery done. Maybe I will go shop for fish, eggs, butter and yogurt. If my car isn’t in the shop yet, I will return this composition book and pen to the car. I don’t want people to think I have a special relationship with it. I am not a spy. It’s not like I sneakily carry around the book, peering from under the brim of my Green Bay Packers and record my observations everywhere I go….

2:58 pm.

A-ha! The car is not in the lot! Although I can’t see that it’s in the shop, I will assume that it is. I am giving them 15 minutes or less. I’ll just squat here on a curb without a cigarette, looking suspicious because I don’t have a cigarette.

3:07

Just paid and checked out. The technician had pulled the car up by my sitting curb. Curbside service. Now that is service I can smile about! The Honda started right up and the check engine is off for now. Life, it’s chronic.

My coeditor: I read the text to her and she keeps her comments to herself.

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