Living with ME/CFS: A Journey Through Chronic Fatigue

So, if you are too tired to speak, sit next to me because I, too, am fluent in silence. – R. Arnold

What is your toxic trait? I have many. One of mine is pushing through when my body is exhausted and needs to stop.

{MYALGIC ENCEPHALOMYELITIS}

I was diagnosed with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Mya what?!? I like this infographic for breaking it down. It is so much more than being tired!

At the time of my diagnosis I wasn’t suffering many of the symptoms. It wasn’t my first concern. I was just trying to get my floppy joints to hold still. ME didn’t seem like a big deal. So what if I’d be tired. I just wanted the pain to stop.

But now, years later, I can see what ME has done and is doing to my body. Pushing through is never the right answer with ME/CFS. And having it?… actually is a big deal. I need to be aware of how it affects my body and what I can do to manage the symptoms.

If you’d like to know what it’s like to have ME/CFS follow these 6 simple steps:

• First you’ll need to fast for 24 hours
• Also stay awake for those 24 hours
• Every time you stand up, spin around 5 times really fast
• Throw yourself down the stairs 5 times in a row
• Run 10 miles
• And continue to try to live a normal life
• this list is brought to you by sunshineandspoons.com

Accurate!

{SYMPTOMS}

The actual list of ME/CFS symptoms includes post exertional malaise. It seems obvious. You get tired after you perform an activity. Everybody gets that. But with ME there is a disproportionate amount of exhaustion for the type and length of activity. For example, showering is so tiring.

What is it? Arms up? Standing in one spot? I don’t know for sure but I need to rest after a shower. Sometimes in the middle of a shower.

Next on my list of symptoms is muscle pain and weakness. I need to exercise to keep my muscles strong enough to hold me together. When we leave the gym I have so much muscle weakness. I have trouble getting to the car without willing my body to keep moving. I’m daily tempted to ask my hubby for a piggyback. I feel the lactic acid running through my veins. Like I just ran a marathon and then sat down for a half hour. Then stood up and tried to walk. Can you feel the Oof?

And my favourite (and most embarrassing) symptom. Cognitive impairment. Brain fog. Oh the brain fog!

The list goes on. Sleep problems. Hypersensitivity to light and stimuli. Flu like symptoms, it has been compared to feeling poisoned. Shortness of breath. Difficulty swallowing and chewing. Sweating. Dizziness. Muscle pain, twitching and uncontrollable spasms. Poor tolerance for hot and cold. Visual disturbances (waves or blurred vision). Inconsistent central nervous system operation. Word finding difficulty. Disjointed speech. Difficulty comprehending text. Difficulty with processing and concentration. Feet burning. Poor digestion. I only list here the symptoms I have experienced. The list goes on for others who suffer ME. As I reread this list, it sounds like the side effects of a drug that’s not worth taking!

Just like so many syndromes in our world the severity of ME each person experiences is on a spectrum. Some people need to spend their lives in bed. Often separated from life to handle the pain that accompanies ME caused by any exertion. My heart goes out to those who suffer in such a way.

I was there.

{{MY STORY}}

In 2020 I hit a breaking point. But not for the same reason many other people did.

My body would no longer work the way it always had. Pushing through wasn’t a viable option. The wall of exhaustion was sudden and extreme. It was physical, mental and emotional. I had to go to bed and I didn’t know when I’d be strong enough to leave it again.

No 20 minute nap was going to fix this.

I had to stop working. I eventually (tearfully) decided to close my business. I couldn’t make my own meals. I didn’t want to eat anything anyway. I didn’t feel like sleeping but I was SO TIRED. My brain was spinning and all my nerves were ready to zap if not treated with the utmost respect.

Most heart wrenching of all. I had to leave my family. I had to go where it was quiet and still. There is nothing quiet and still about three teenage/ young adult sons and a farm to run.

I needed to be warm. And hushed. I needed to focus on me. Just me.

It. Took. Months. Of being still.

More months of learning to slowly start life again. And then starting over again but with boundaries.

More months of realizing this is my life now. I had expected to put my life on pause for a short time. And to pick up where I left off as soon as I was “better”. But you can’t live on pause. And there was no “better” forthcoming.

Not everyone who suffers ME will experience the same results as my story. Even if they do exactly what I did, outcomes differ. You can do everything right and still suffer the symptoms. I managed to break free from chronic fatigue’s strangle hold. By no small miracle.

During those first months my brain just wanted to stop but I had so many daily worries. I couldn’t handle the thought of letting them go. And there was nothing to physically be done in my state to take care of them.

So my mom would come into my room at her house. She would sit at the end of my bed and write all of my worries down.

She’d help me sort out what needed to be taken care of and who should do it.

Over time I started physically building myself back up so I would be strong enough to go home. I’d walk around my parents house for a minute. Then two. Then three. Everything had to be such a slow build. Or I’d start from square one again.

I couldn’t handle any stress. Try avoiding that in this day and age! It was and is an ongoing battle to recognize and alleviate those triggers.

This all seems a lifetime ago. Today I live an almost normal life. Normal for me I should say. I still can’t work. I have to pay attention to how I am feeling at all times. I need to make sure I am not overdoing anything. I listen to my intuition when I take things on or when I choose to politely decline. Sometimes I get it right and sometimes I have to go to bed.

{OVERCOME}

I don’t like being known as the woman who is always exhausted. Pushing through and setting off flares in my body. I don’t want to be remembered for just barely holding it together.

What can you do if you suffer some of the same symptoms? What are the treatment options? Doctors will tell you there is nothing they can do. While this might be true, there is plenty that you can do.

{TREATMENT}

Forest bathing is my number one recommendation. Get into nature and find comfort and healing in its embrace. As the days get colder just add more layers. If you need help to get the greatest benefits out of the forest head over to my contacts page. We can go together and I can show you how.

Do not find yourself guilty of my toxic trait. Do not push through. Just keep swimming is not always the right advice especially not for chronic pain sufferers. Just keep swimming till you have a flare. Just keep swimming till you are in so much pain you can hardly move. Just keep swimming will put you in bed. Your best option might be to just stop swimming and respect your limitations. And take care of yourself accordingly.

Do not let your bucket run dry! Keep a daily schedule to stay on top of these treatments and ways of life.

Other treatments include pharmacological (for sleep, for twitches and spasms, for depression that often accompanies chronic illness, muscle relaxants (not me, my muscles are stretchy enough on their own), or medical marijuana for pain).

More treatments for pain include massage, physiotherapy, chiropractor, meditation and relaxation, heat and cold packs.

Sleep. Set up a soothing bedtime routine and stick to a regular sleep schedule. I am working on practicing what I preach in this area.

Other useful tools: Add salt to your water for extra hydration. Compression socks. Breathwork. Clean diet. Memory aids. Ear plugs and eye masks. Ask what your body needs and follow its answers.

{TO THOSE WHO SUFFER}

I end with this justifying quote for all those who suffer from ME/CFS. Dr. Clare Taylor said,

I maintain the sickest patients I have looked after are ME patients. They suffer. Every single day. For years. And get told to try harder. One day it will be accepted for what it is.

I don’t know this doctor. But here, here! Vindication for all who suffer.

If this sounds familiar to you, and you want to discuss more than what I cover on the blog, reach out to me on my contacts page. Tell me your story. There is healing in just that.

And she stopped… and she heard what the trees said to her, and she sat there for hours not wanting to leave. For the forest said nothing, it just let her breathe. -Becky Hemsley