It’s spoons, Jim, but not as we know it.
For those of you who do not have a chronic illness, especially one that involves fatigue, you may not have a clue why spoons are so important. But our spoons are more metaphorical and it all stems from The Spoon Theory created by Christine Miserandino. Christine suffers with Lupus but her simple and incredibly effective theory has been adopted by chronic illness communities the globe over.
The theory basically uses a finite number of spoons to equate to the amount of energy you start your day with (healthy people will have more spoons than those who are unwell). Each time you undertake any task during the day, you use or spend a spoon. It’s essential to plan your day well so that you don’t run out of spoons too quickly and find yourself exhausted before you’ve managed to have dinner or get yourself ready for bed. The full theory can be found here.
So why am I telling you this?
Well, exhaustion or fatigue is one of the least understood symptoms when it comes to our peers. People actually roll their eyes at you or say “you’re always tired” when you try to explain how drained you are. I’ve been tired before but this is on a whole different level!
Exhaustion is my toughest symptom. Not just because it’s my most common symptom but because it’s the one I least accept.
I can understand how a joint disorder can cause pain but I can’t get my head around how running the vac around my house can wipe me out for the rest of the day.
And it’s everyday!!!!! Considering I was training to run my first half marathon when I was diagnosed, this was not my normal.
My worst experience was when I was still working full-time and had to spend a whole six days in bed. I have never felt so out of control and had to just give in to my body.
The photo above shows my last bad day. I really needed to wash my hair and those eyes are black!!! Leave in conditioner is my saviour.
The thing that angers me the most is the impact it has on my ability to parent; to be the parent I want to be.
My son never shuts up, in the most wonderful of ways, and he just brain farts all over the place. I hate the times when I’m not able to talk more than one word at him and I feel terrible that I can’t play with him when my exhustion is really bad.
Thankfully, hes’s very understanding that Mum has “bad days”. The blankets come out, Netflix & Lego Dimensions get put on and we make the best of the situation (although building the Lego characters with brain fatigue is like being on University Challenge). As he’s grown up, he’s got used to these bad days as being part of our life and even tells my husband when he thinks I need a rest.
I just can’t accept that this is what his normal should be!
The other thing that really gets my goat is the sacrifice my husband has to make. He has to be Dad, Mum, Husband, Housekeeper, chauffeur and more. I know that without him it would be beyond tough. He doesn’t have a choice when the proverbial shit hits the fan and he just steps up without complaint. He does though give me very odd looks when I announce out of the blue at 10.30pm that I need a bath!
So to those of you healthy non-fatigued folk out there… If someone is telling you they have chronic fatigue, it’s so important not to dismiss them as just needing a good night’s sleep. It is so much more. It’s not being able to move your body out of bed in the morning, not being to lift your arm to brush your teeth, not being able to put clothes on, let alone shower. You can’t lift the kettle to make a cup of tea (this is the worst thing in the universe), you can’t concentrate on a book, you can’t hold a conversation for an hour with the bouncy seven-year old on what the meaning of life actually is. And some days, we just don’t have enough spoons in our day to justify just how “tired” we are.
For those of you reading this who do have Chronic Fatigue in their lives, I can’t recommend using the spoon theory enough to help your family and friends understand a little better. Share this and use me so you don’t have to use a spoon (and there’s still that link above if anyone needs a refresher).
Sleep well zebras.
The spoon necklace featured above is from Spoon Your Heart Out.