Are You an Unchargeable or a Spoonie?

Are-you-a-chargie-or-a-spoonie-BLOG

People often wonder what we mean when they hear us talking about spoons or that we are unchargeable. These are words I never used before joining the world of the chronically ill and disabled. In this post I will try to explain the meaning behind these terms and which one I identify with most.Continue reading

Don’t Do Your Best, Do Less

Avoid the boom and bust cycle BLOG

Anybody who has ME or CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) will be very familiar with the boom and bust cycle. ME's main characteristic is Post-Exertional Neuroimmune Exhaustion (PENE) also commonly referred to as 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, answering the phone or writing this post is exhausting and will cause an increase in a variety of symptoms. The problem is that when I feel better on a particular day, I tend to want to do more because I feel able and would like to participate more in life.

But pushing oneself to do more simply because you feel okay in the moment, is not really an option for people with ME (pwME). Our payback is often delayed for up to 48 hours which means that I might feel capable in the moment, and may even have no increase in symptoms for hours later, but then 2 days later I am completely incapable of doing the most basic things.

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My First 6 Months of ME/CFS

Long road to diagnosis, 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.

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