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…
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 I’m so excited about this! I am…
People often wonder what we mean when they hear us talking about spoons or that we are a spoonie or 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. How To Know…
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…
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…
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…
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…
I’ve completed my second knitting project! So pleased with this one. It was so much fun knitting it too. It’s a kit called “Bianca” in such rich Autumn colours. I completed it last night and this morning, once my headache subsided, I added the fringe. Between the dozing off, that is. Terrible flare this past week, absolutely floored. Muscle pain…
Celebrating my first completed knitting project since I was about ten years old! I have been trying to knit a scarf with this one ball of wool for years and years, I’ve knitted and undone it so many times over and last night I finally completed it. One ball obviously wasn’t enough for a full scarf, so it’s been turned…
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…
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…
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…
Today has been quite productive! We just had our shower doors replaced this week, which meant waiting at least 24 hours for the silicone to dry before we could use the shower. It smells really bad, but Praise God we found a cheap little fan on Amazon and it’s been such a help with the ventilation in the room. We…
As a thirty-something year old woman, who looks perfectly healthy, walking around a supermarket with a walking aid most commonly used by the elderly can bring up all kinds of feelings. When elderly people who are clearly struggling are walking around the same supermarket without any mobility aids, the looks you get can cause an odd mixture of gratitude, shame…
Today has been amazing! Its such a gorgeous day, extremely hot and sunny. I’ve only spent short bursts outside as my skin burns in the sun today – it’s that hot! I started the day with a lovely reading session out on the patio, the sun had just come round the wall and was slowly flooding my patio with light…
My happy face, my happy place. What a gorgeous day today! So hot and sunny with a lovely cool breeze… I just love British summers! And today I celebrate with colour. I even mismatched my earrings on purpose, they match my mood though! Today I enjoyed a few hours at the desk with all my pens – lettering and colouring.…