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.