I, and others before me, have posted a link to one of the many accounts of ‘spoon theory’ that is to be found on the web. It was introduced to me by a young woman who has a rare genetic condition, one symptom of which is fatigue. It helped me to understand where she was coming from, how life was for her, and it also helped me during my treatment not to feel so guilty or so useless (and let’s face it we all need permission not to do either of those). It was suggested to me from another thread where I linked it, that I ought to post it in its own thread… so here it is and I hope it is something people find helpful, for themselves or to show to friends/rellies that don’t quite ‘get’ how life is for you just now.
That totally sums things up - luckily, at home, I have a very, patient & understanding OH and a long sick pay scheme from work.
It’s certainly something I will take with me when I’m working again (I hope they don’t think I’m going to be into full swing at my job straight away … No chance, can’t even remember my passwords!)
Thanks for that link. I have just started to accept the frustration of not having enough energy to lead my usual life. I have subconsciously fought it for weeks but now I am happy to watch a DVD in the afternoons, saving some spoons for later.
Thanks for the link RevCat it was enlightening and like a breath of fresh air, such a simple thing to explain, just coping, carrying on without having the guilt attatched to not achieving certain goals of the day.
Setting urself huge tasks and pushing yourself to do them, either for yourself or someone else can end up making you feel the great weight of guilt.
I was always full of spoons, using them recklessly, really up until a few weeks ago, even now my children still expect me to do certain things that I have always done, sometimes I remind them but often (guilt) I push myself and use my whole supply of spoons with out thinking…
Its certainly got me thinking now and mayb be kinder to myself and realise that you can’t please everyone, all of the time.
many thanks
Clare xxx
I gave the link to my daughter about spoons as she has a busy week ahead of her, some of which my involvement would be needed and wanted by her. I’ll list the things we talked about.
First she is going bowling tonight with the scouts (post christmas treat) parents can come and all paid for.
Second she went out today without a coat or jumper in the freeze.
Thiird she has parents meeting that she and I would both like to attend.
We discussed the spoons it would take for me to get on the coach and just be there and decided that perhaps it would be too many, by the end of the evening.
The coat/jumper business I said I would use untold spoons to actually put her coat on and walk to the bus stop and stand with her to make sure she kept it on (peels of laughter) total agreement after much fun that perhaps she would wear her jumper to save my spoons and her embarrasment ( of course)
So on super spoon save for Thursday (parents evening) as her father has never been to either of my childrens schools and I need to teach him the ‘ropes’, and quick !!!
Clare xxx
Thank you for this, I really feel that this enables us to explain so well how we feel at each stage of this journey. I have for quite some time tried to keep all the ‘plates spinning’ - back at work full time (since May), house to keep, treatment (Herceptin ongoing - well finished today!) etc, etc. And then I wonder why I am tired. The rollercoaster of the last 18 months/2 years is one which is still rattling round and it is exhausting. I like the analagy to the spoons and the choices of ‘what and how much’ as opposed to an expectation of it all ‘all of the time’. Take care all. J.
I have lived with M.E. before and after BC and even I need that spoon theory to remind me about the guilt trip which constantly hampers my recovery…
Thanks for the link. I’ve stored it under my favourites so I can remind myself more and more… but I’m still going to squeeze in two more jobs before bedtime!!!
So…looking at my spoons for today nd there are fewer than i thought i would have today. Oh working away nd so stuff needs doing! Any ideas where a few extra shiney extra large spoons may be hiding? So far ive looked in the fridge nd had a quick look in the kids bedrooms - but no luck. So, pls keep your eyes open!! Im happy to share them out!!
Thanks for posting that Revcat. It made me want to cry because it’s clearest description I’ve ever read of living with illness, drug side effects etc.
I imagine it might be quite hard for a loved one or friend to actually read because it really hits you but what a great way to describe it.
It certainly does make you appreciate each and every spoon.
This is one of those days where I just didn’t quite have enough spoons so going to hunt for a couple over the weekend to get me through work! Lovely,lovely thread!
Had a few tears when I read the spoon theory not just because I realised how hard it is to spread around what energy you have but because I have a friend with Lupus and I know how hard it is for her but she refuses to give in and is a remarkable person. Thanks Revcat for the link hugs Janicexxx
RevCat, I sent the link to one of my sisters, who has fibromyalgia. She was really pleased to get it, because she has been lying on the sofa and groaning after trying to do too much, and feeling very let down by friends who don’t understand and who don’t seem interested. (Sound familiar to anyone?) So thanks again for the link. I sent it to our other sisters as well, in case they can use a few spoonfuls of patience and understanding.
Some days , hunting high and low for spoons!!
Otherdays (like today) spoons just keep arriving!!
Wish i could build a reserve store!!
And wish i could send to others…(esp potmaid).
I suppose we just enjoy spoonfull days nd be aware when they are in short supply nd use that really hard word to use - ‘no’!!