A pic from a walk the other day ☀️ Not feeling good the past couple of days. Went to bed at 6.30 last night & actually slept... Woke up a couple of times but slept virtually all night which doesn't happen often. Got the kids to school now having a day on the sofa, hoping to get some energy back. Have a good Thursday 💕 #chronicfatigue #chronicfatiguesyndrome #cfs #lifewithcfs #chronicillness #livingwithchronicillness #myalgicencephalomyelitis #spoonie #spoonielife
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So, look at my beautiful view which I’m grateful for. And I’m sat here in awe and appreciate, but also with utter depletion and sadness. // I was going to do a IG story but I haven’t the strength, yet I want to explain HOW this illness works and FEELS. // To actually explain. Because people do care and want to understand// So, Here it is - I wake exhausted every day. Like yesterday I ran a marathon on no food. .... // My aim is to try to get to the next marker. First to get up. To get a drink. Each marker and step depleting me further as my reserves are used up. Never able to think about the day ahead because that would mean cancelling every little thing at this point. // Getting breakfast the next challenge. Sitting here afterwards wondering how I’ll get dressed and clean my teeth. Maybe a bath would ease me in? Knowing I need to rest more before that can happen. // Once I’m dressed at least I’ve ticked off the basics (which don’t feel basic) and can consider if the next marker will be contemplated. If that is even a potential? Often THIS is it though, but if so I go back to bed from a place of ‘trying’. Of some satisfaction. For Always we are motivated even against the deepest fatigue. Always with will power even if that isn’t seen. // And so daily living at this level is about STAGES. One step at a time. Seeing how far we get. Maybe that ‘thing’ will be possible this afternoon once we have ticked all the milestones before it. Right now with them all in front of me it is not. // A game of chance? Nope. It’s a game where there is no energy and all we run on is (unappreciated) inner strength . Step by step. Often taking only achieving 1 or 2 steps in a day ... then on repeat each day ... wondering if we will get to step 3 or 4?, or maybe once a month to step 6? ...Not knowing. always trying. A game of uncertainty. This is how it is.// And if you find yourself a player in this game know that I see you. I know your courage. Every step is valid. Xx
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Sleep when you suffer with M.E. Is either all or nothing, pain, worries, emotions also adds to sleepless nights; we tend to be restless in bed getting frustrated with not sleeping, clock watching creating tension in our mind, we go on social media and Netflix to try get us to drift off, but this stimulates our brain waves instead of relaxing them; we hold lots of tension in our muscles as well as our mind, which causes pain, sleepless nights, restlessness and emotions. The good news is that sleep patterns are part learnt by our mind and with some simple steps we can reach establish a good sleeping pattern to get the restful and healing sleep our body desperately needs. You can find out how in my new Ebook ✨ link in my bio or found on my website ✨ #myalgicencephalomyelitis #mecfs #cfs #cfsme #chronicfatigue #spoonieyoga #fibromyalgia #invisibleillness
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Really wanting to go back here. One day. Hopefully sooner than later. #coronado #ThattimeIhadenergy #millionsmissing #myalgicencephalomyelitis
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Today is a rest day. I'm so sore and exhausted from non-stop action yesterday. I got acupuncture and had my bloods taken so check if I'm celiac #chronicillness #chronicfatigue #cfs #myalgicencephalomyelitis #celiac #tea #vegan #bookworm #recovery #spoonie
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#tbt to life before #cfs Now, 3years 1child and a chronically debilitating illness later, summer is around the corner and I'm determined to get my family back under sail again. Im thinking if I can plan and prep the crap out the day, avoid any unnecessary energy wasting activities then I can get my #tiredgirl out on the water with us. Because... what's the point in being the Dread Pirate Roberts if there's no Buttercup. #partnersofchronicillness #perthisok
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👀 Ever get the feeling your being watched ..... 👀
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