A woman carrying a bucket of cleaning products. Title reads: Don't do your best, do less. How to avoid the boom and bust cycle.

Don’t Do Your Best, Do Less: How To Avoid The Boom And Bust Cycle

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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.…

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Gold Christmas baubles hanging down. Title reads: Christmas 2016, a quiet dinner with friends, a personal update.

Christmas 2016 – A Quiet Dinner With Friends

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! Christmas With Friends 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…

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Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.

International Day of People with Disabilities: Not All Disabilities Are Visible

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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. There are many conditions that do not display any outward signs of illness or disability, but they are just as debiitating as any condition you can clearly identify. Leading A Double…

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A country scene with a muddy path in the hills with mountains in the background. Title reads, The long road to diagnosis, my first 6 months of Myalgic Encephalomyelitis.

The Long Road To Diagnosis: My First 6 Months of ME/CFS

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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.…

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Char in her pyjamas, sitting in the sunshine in the middle of her room. Title reads: muscle wastage and personal grooming, a personal update

Muscle Wastage And Personal Grooming In ME/CFS

A couple of days ago we had some gorgeous autumn sunshine after a few dark and dreary days. I’d just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! The rest was welcome though, dressing is hard with a weakened body. I only managed about ten minutes in that chair, but it was lovely and warm. I love the sunshine so much, the warmth…

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A bird soaring in the sunset sky. Title reads: Reflections on faith through chronic illness after 18 months of chronic fatigue and pain.

Reflections On Faith Through Chronic Fatigue And Pain

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Today marks 18 months of this Chronic Fatigue Syndrome. At least 18 months in this severe housebound state, we imagine I might have had it milder for at least 6 months before this. As a Christian, I find myself reflecting on the role of my faith through chronic illness. I don’t believe God made me ill or that He is testing me. I don’t think God works like that. In my view, that would contradict His character of Love. Many…

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Char lying on the patio in the sunshine. She looks very happy.

Enjoying This Gorgeous London Sunshine

Spent the whole morning enjoying this gorgeous London sunshine out on the patio today. I had breakfast, drew a bit, then painted for a while, and just enjoyed the sunshine! I even hung a sheet over the washing lines to create a sort of tent for a bit of shade and lay out on a grass mat enjoying the warmth of the sun on my legs and the cool breeze. I don’t have any patio chairs or table out there,…

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A long list of symptoms, title reads: my symptoms of ME/cfs in 2015. Dozens of fluctuating symptoms.

My Many Symptoms Of ME/CFS In 2015

You might be wondering why on earth I’d write about the symptoms of ME/cfs when everybody knows Chronic Fatigue Syndrome or ME is about always being tired. What most people don’t know is that this neurological illness causes dozens of unrelenting symptoms that fluctuate constantly and are quite unpredictable. The very least of these is an unfathomable exhaustion at the slightest exertion! Fatigue is the least of our worries – let me share with you the list of symptoms that…

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Autumn leaves on a tree. Title reads: When simple errands become overwhelming. Personal Update.

Chronic Illness: Making Simple Errands Overwhelming

When unforeseen problems force me to go out despite severe ME/cfs, simple errands can become overwhelming very quickly. I had to go out today, needed to send off some paperwork, but my printer ran out of ink, again! I needed to print off a load of sheets, so I had to take a bus to get that done at one place, then off on another bus to find a post office to send it. By the time I got to…

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Clouds in a blue sky, Title reads: Assessment and diagnosis at the chronic fatigue clinic, an update on my ME/cfs journey.

My Assessment And Diagnosis At The Chronic Fatigue Clinic

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I attended my first appointment with the Chronic Fatigue Clinic today. I finally have an official diagnosis of Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis). At last! I was referred to the CFS clinic by my doctor about 5 months ago, but the waiting lists are long. I’ve been searching for help online in the meantime and just doing what I can to manage alone. The clinic is about 45 minutes away and requires a couple of changeovers by…

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