16/02/2026
Accountability and keeping it real.
I initially thought about not posting this, but it's a reminder that recovery and living with ME/CFS is not always a linear line. The bottom line is I am not doing great. The infections I had over Christmas and New Year triggered a flare up which has since turned into a relapse. The worst since I first fell ill back in 2018. I am struggling with fatigue, sensory sensitivities, disrupted sleep cycles, elevated pain and neuralgia. I feel like all my hard work and effort the past 7 years has gone to waste. But deep down I know that's not true, plus at least I am able to tolerate sound (to a point) and daylight, so I am able to listen to music and podcasts and watch the TV or Netflix on my fone this time round. I am not stuck in complete darkness or silence like before.
On Saturday the sun was shining and the sky was big and blue for the first time in what seemed like forever. It was a chilly day with a frosty start, but oh that glorious sunshine!
It was calling me name. All I wanted to do today was get out on the trails with husband, be in my happy place and feed my soul, and there I was deciding where to go, considering things like location, distance, and route.
Given my current ME/CFS condition I wanted mud free on hard packed terrain to make walking as easy as possible, I wanted to be up on higher ground so that I could see the views, I wanted a route that would be 2 miles MAXIMUM and I also didn't want the car journey to be too long (15 minutes maximum).
It was hard to meet that criteria but decision made. Gribdale. My chosen route would take me up the steep steps to start off with, but then relatively easy and short walk along the Cleveland Way to 'Mouse Gate' - the gate overlooking Roseberry, and back. I would take my walking poles to help me with my balance up the steps.
But there was one massive problem that I was overlooking.
I was making all these plans when I was propped up in bed supported by pillows!
What on earth was I thinking?! I couldn't even sit up unaided!
If I was unable to sit up I certainly couldn't get out for a walk! I wasn't even dressed so I woukd have had to find the energy to get myself dressed before I could even get out of the door. Nope, it wasn't happening.
I had to ask myself "If it was a dull and miserable day outside would I be even contemplating going out?" The answer was simply "No".
It was the sunshine that sparked my urge to get out. Instead if it was a rainy day I would not be pushing my body, I would instead be listening to it and giving it what it needed and resting up in bed.
After a good cry and I had to give myself a talking to. The sun will shine again, and the trails will always be there waiting for me for when I am able to enjoy them again. But no matter how much I crave it and how much it hurts like hell not being able to get out I have to put my energy into the hope that one day I will get out again, and not waste it on frustration or being upset.
So instead I laid in bed with the window open with the sun on my face, the crisp cool breeze filling my lungs, I could hear the birds singing their springtime love songs, and I just thought of brighter and better days ahead.
ME/CFS strips your world bare. During a relapse you are purely in survival mode. You don't live a life, everything is taken away from you including your plans and dreams, everything that is except the people who love you, who support and who are there for you. They don't get frustrated when you cancel plans, they give you space to recover.
What hurts though is that there are people out there who think I am faking it! They think that I make this up, and that I shouldn't be trusted nor believed. They may see me out walking, they may see me laughing and smiling and looking happy. What they don't see is the times I am in bed unable to sit up, get dressed or shower. It's not called an invisible illness for nothing!
Thankfully those who are ignorant about the illness are far outnumbered by the right people that I have around me and my friends who get it and get me. I am so thankful to those around me who encourage me, motivate me and make me laugh.
I have to give my body time.
Today I had a better day. I managed a 15 minute very slow walk up the cycle track that runs at the back of my house, before needing a nap when I got home to recharge my batteries.
I gently moved me body, I listened to the birds singing and 2 squirrels having a chunter with each other - not sure if it was a male trying his best chat up lines to a lady squirrel, or telling another male to get off his patch π€·ββοΈ and I stopped and looked up at the bare tree canopy above me and a buzzard soaring way up high above me. It made me appreciate the world around me.
Nature was grounding me.
Better days are coming.
Slow movement.
Long deep breaths.
I try again tomorrow.
On we go.