Category Archives for "Spoonie Life"

posts about life with a chronic illness

Transitioning to a Paleo-ketogenic Diet

As some of you might know, I have recently started reading Dr. Sarah Myhill’s book, Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis. It’s a huge book, with over 400 pages, and includes so much detail about how the body works and what she believes is happening to sufferers of ME/CFS. I’m so excited about this!Continue reading

Don’t Do Your Best, Do Less

This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.

This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.Continue reading

International Day of People with Disabilities

December 3 is International Day of People with Disabilities. It’s a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it.

The message I want to get across this year, is that not every disability is visible.

Since joining the world of the chronically ill, I have found that many spoonies (people with chronic illness) prefer to not share their condition with friends and family. They live a kind of double life. Putting on a show of normality, working hard to hide their disability or illness. Often becoming lonely, isolated and resentful toward those who have forced them to live that way.Continue reading

My First 6 Months of ME/CFS

It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn’t do anything about it. It wasn’t very frequent initially.

By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn’t help me. They did loads of blood tests and couldn’t find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn’t.

Continue reading

Reflections on Faith through Chronic Fatigue Syndrome

God lifts us up

Three years ago today I took this photo of the sunrise and added the devotional message for the day. Today I’m sharing it as I remember the beautiful image painted in the devotional of how God lifts us up by His strength. On wings like eagles…

Today marks 18 months of this CFS. At least 18 months in this severe housebound state, we imagine I had it milder for at least 6 months before this.

I never wonder why this has happened to me or what the cause is, I only know that God can take it away in an instant if it’s His will to do so (I’ve seen this done, so I know that I know that I know that He can), and I also know that not everybody is healed. And that’s OK too. My faith is completely in the will and timing of the Lord.Continue reading