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

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

Christmas 2016

Had a lovely quiet holiday weekend, but did enjoy my first outing in a couple of months on Christmas day. Was super blessed to have such understanding and considerate friends and that the Lord gave me just enough strength and relief to be able to really enjoy the day! Praise God!

Our friends came to pick us up and brought us back later in the evening. We got to spend a quiet and fun evening with the 2 of them in their new flat. There was a wonderful roast dinner of a Cornish Game Hen each, stuffed with an incredibly good wild rice stuffing. Green bean casserole and freshly baked bread were also on the menu, as was homemade mulled wine.

Although I’ve been in bed for the last couple of days since, today I felt quite good generally. Just my hips and coccyx tried to kill me each time I stood up. So much pain! I washed a few dishes this evening and tried to make a rice salad for dinner, had to stop and get back to bed in the middle as I got so weak and dizzy and felt I would collapse… Of course my sister finished off the dinner for us. So glad to have her here!

Then by 9-ish pm I was utterly exhausted again and had to lie down. I think I managed to fall asleep by around ten and slept for only an hour. Woke with the left side of my body numb and tingling… Like Pins and needles on steroids. Left arm and leg. Dead. So my sis suggested I sit up in bed to help the blood flow back to my limbs, it did help, and here I am at 2 am still awake…

Last night I also lost feeling in my left leg. I also had to sleep by ten and slept until ten this morning! Struggling to wake up in the mornings, not like me to sleep so late in the day. My mind has been all over the place too. Hard to form sentences at times, I’m forgetting words, or what I’m saying mid-sentence, it’s frustrating. Safe to say I’m in some sort of flare within a flare.

Spending my time in bed colouring, surfing Internet, Netflix and daydreaming… Also known as recovery mode or what I like to call vegging. Minimum exertion activities. And by minimum exertion I mean activities that require little to no brain or body exertion! Typing is exhausting. And I’m getting sleepy again too… By the way, I haven’t showered in days, so I haven’t taken any new photos in a while.  I’m hoping tomorrow can be a shower day!
Sweet dreams all. xx

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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