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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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!