Reflections After Two Years in Bed

As the new month starts, I am filled with joy and anticipation. I love new beginnings, and for me, every new month is a new beginning. So is each new week, really. I enjoy celebrating the ordinary! In this post I want to share some very personal reflections as I look back at the road I’ve travelled and celebrate this new beginning.

Yesterday marked 2 years since I have been able to do any form of exercise that wasn’t just a short walk. My last workout was actually a bike ride. It was Easter break and I was visiting my family in Italy.

How To Cope When You’re Low on Energy

Having Chronic Fatigue Syndrome, or any other chronic illness for that matter, can be extremely draining and leave you without much energy to do even the most basic things. How do you cope when you only have enough energy to do one or two things each day?

There are a number of things I started doing (or avoiding) once I realised that I was constantly reaching beyond my limits and actually causing my flare-ups, I will share them here.

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.

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.

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.