I’m a spoonie, that means that when I wake up I only have a limited amount of energy and I have to decide how to use it, if I do too much then the next day I will start off fatigued and so on. As well as CFS I also have CRPS and so over doing it will also cause my pain levels to rocket.
Here’s great explanation of the spoon theory https://sailingpenguin.wordpress.com/2015/02/26/spoons-beans-and-the-science-of-crash-calculations/ and also a very good blog to read.
All of us that have this problem because of ME/CFS, fibro, lupus EDS, CRPS and many more illnesses that I could list but will take forever, we all have decisions to make that when we were well, we didn’t have to make. Decisions like;
Do I shower today?
Do I go to the shops?
Do I help tidy the kitchen etc?
Do I have a shave?
Do I go on the laptop? (we get mentally exhausted)
And even, do I have sex?
It’s called “pacing” and I’m the worst person for pacing, I have had a rough, no a very rough winter and I spent it battling very high pain levels and fatigue but the spring is a dangerous time for me. Its no longer cold, its also not too hot and so this is my time to go silly and make myself feel even more unwell.
The other day my pain levels were at about a 5 and I felt pretty okay (ish) and so I bumshuffled out into the garden dragging my wheelchair behind me, I pushed halfway up the lawn and its not an easy push, this is no top notch lawn, anyway I then attempt to straighten the bird feeder station pole because it’s wonkyness has bugged me for months. Then I pull a weed out of the flower border and before long I’m out of my wheelchair and sat on the grass and pulling loads of weeds out, I can feel my hands are hurting and getting stiffer but I carry on, I weed a section and then push the pile of weeds along and then my wheelchair and then bumshuffle to the next bit, the border isn’t too long, its about 30 feet and I manage to weed all of it.
What I have forgotten is that I have to then bumshuffle back up the steps and over the patiodoor threshold (it’s a painful manoeuvre) whilst dragging my wheelchair with me and as work my way up the four steps I spot my wife! Oops, now I’m in trouble, she was in the kitchen doing some jobs and hadn’t noticed that I was overdoing it, or so thought. She had noticed but decided that if I was going to do the weeding, its down to me and this unsettled me, normally I get a lecture and I’m used to that.
I make it to the settee after washing my hands and I feel like I have just run a marathon, I’m hurting like I’ve been hit by a truck and my mind won’t focus because I’m that fatigued.
For me it was worth the pain, it was worth the feeling of pure fatigue because I’m always resting up and I’m always unable to do something because I’m in pain, just weeding that border made me feel alive, it made me feel good, well for a bit anyway.
Yes we fatigue easily, we also cause a heap of other symptoms because we dared to be active but it’s a decision we make knowing what will happen, we don’t need to be berated for doing so. Choosing to be active and make ourselves feel unwell is not a hard decision, sitting still and resting is a hard decision.
So now I’m paying for that moment of normality, but I know that it won’t be long before I do it again and I’m hoping it will be when I get out and use my handbike, spring is here and I feel alive again, I spent the winter months dreaming of this and I am going to make the most out of being able to over do it and I’m going to do it again and again!