I have been conserving spoons all week (if you are looking at my blog with a what on earth is she on about face, have a read of the The Spoon Theory One of the best descriptions of living with a fluctuating condition out there)
The notion of saving spoons is really simple, it doesn’t mean I will don my wonderspoonie costume on tomorrow and fly off on a fibro-girl adventure - although id love a cartoon version of myself that sounds great, but in a vain attempt to stick to the point I wont go off on a crazy tangent.
If you have not been diagnosed, are new to it or have lived with a fluctuating condition for a while, hell if you are friends, family with a spoonie or a the lover of one (have I covered everyone) getting your head round saving your energy to do something really important to you can take a while to make sense, and even when you do very little, rest lots and still have sod all spoons can be demoralising to say the least.
I get so frustrated when I have to say no to things, work out in advance what I can do and what is really beyond me, I'm a stubborn woman and very often "Lovely man" has to remind me that I’m not superwoman and can't. I so hate the word can’t. Before I got ill I had choices, and that is probably the single biggest mental hurdle to get over that you no longer have a choice about somethings.
What I mean is you wake up one day and bam you really cant get out of bed and go to work, you have cancel the third weekend's worth of activities in a row, gone to bed at 8 cause your so tired and done the not tonight darling my hip hurts never remind my head. And you hit a "brick wall".
In essence the word choice leaves your vocabulary, you may carry on for a while thinking if I cut my hours at work I can carry on, I will just go out for 2 hours on a Friday, get a cleaner in or at least ask someone to help, buy really easy to care for clothes and swap your beloved heels for sensible flats. Or if you’re a man the non iron shirts start to look appealing. But no matter what you do at some point you have to get honest about how your life really is, not how you want it to be.
I’m sorry to be the bearer of such news and in a weird way it is the first step to acceptance, reframing how you view the world, will in the end I hope allow you to find a way of having your cake and eating it, you just choose a new cake and go from eating it all in one go to slicing it up and nibbling. I’ve never been very good at nibbling, so id rather has two cakes but that takes me back to denial. How on earth did I stray into cake?.
Bear with me I am making a point, if slightly long winded, choice and honesty - When you leave behind denial and trying to live life as you once did at some point there is a very big chance you will hit depression and anger. It’s perfectly natural. It can manifest in many ways, I hid for ages at first I proclaimed loudly I had fibro, I talked a good talk about how I accepted it, and was ok with it and glad it had a name. I really did talk utter bollox at times. I apologise now to the friends who had to stand back, listen and wait for me to fall, while I got lost in a very dark lonely place. The truth is no matter how much I said the words, I didn’t believe them. My anger was directed at me, I no longer believed in me, I had absolutely no bloody idea what to do.
That first winter when I was newly diagnosed what was probably the loneliest destructive place I have ever been in, no matter what I said to the contrary I was lying to myself and those who loved me. I lived in a small council flat, that first winter was cold snowy one, so I was housebound and besides my sweet friend who I have been saving the spoons for (Its her wedding tomorrow whoop whoop) along with my best bird and Mrs woman I rarely saw anyone, I rarely ventured out, I comfort ate, my house was a mess, my relationship with my son was at an all time low. And of course my Fibro was out of control. Spending hours on my soda, barely able to move and look after myself is a terrible situation to have been in.
I became locked in a world of pain, fear and loneliness. I was facing living with this for the rest of my life with no worth or choice. As the spring came so did hope, I don’t really know where it flowered from, or how it came about perhaps it was at some deep level I knew that I did have a CHOICE - I could give up and get swallowed up in a world of passively waiting for others to help me or I could find a way back to being a woman of worth. I had no idea how I was going to do it, or what my life would look like. But I knew one thing with certainly I would never allow myself to go back to where I had been.
This blog entry has become a bit of an epic, What im trying to say is be honest about where your at, even it’s only to yourself. Its ok to be angry, fucked off, sad, scared, mind bendingly pissed off, or euphoric (although if that’s the case id say check your medication side effects) There is support out there, but until you become your own advocate no body will be able to help. Simply because you won’t be ready to listen. In your head even if you ask for it somewhere you will be saying YEAH BUT!
I still say yeah but, and don’t do as I’m told and fall over, use my spoons up on all the silly things and not always the important stuff, I’m human and I get it wrong and I’m still learning. Tomorrow I will be a bridesmaid, I know I won’t be the last standing – but I will be there and I will have a ball and be the best I can be. Next week I will be a broken wreck. but sometimes its worth it – in the life of a spoonie its all about using the only real the choice you do have, do nothing, use your precious energy little by little or sometimes to empty the whole dam drawer and go for it. But it’s being honest about it and not resenting or wasting energy on thinking why me.
The notion of saving spoons is really simple, it doesn’t mean I will don my wonderspoonie costume on tomorrow and fly off on a fibro-girl adventure - although id love a cartoon version of myself that sounds great, but in a vain attempt to stick to the point I wont go off on a crazy tangent.
If you have not been diagnosed, are new to it or have lived with a fluctuating condition for a while, hell if you are friends, family with a spoonie or a the lover of one (have I covered everyone) getting your head round saving your energy to do something really important to you can take a while to make sense, and even when you do very little, rest lots and still have sod all spoons can be demoralising to say the least.
I get so frustrated when I have to say no to things, work out in advance what I can do and what is really beyond me, I'm a stubborn woman and very often "Lovely man" has to remind me that I’m not superwoman and can't. I so hate the word can’t. Before I got ill I had choices, and that is probably the single biggest mental hurdle to get over that you no longer have a choice about somethings.
What I mean is you wake up one day and bam you really cant get out of bed and go to work, you have cancel the third weekend's worth of activities in a row, gone to bed at 8 cause your so tired and done the not tonight darling my hip hurts never remind my head. And you hit a "brick wall".
In essence the word choice leaves your vocabulary, you may carry on for a while thinking if I cut my hours at work I can carry on, I will just go out for 2 hours on a Friday, get a cleaner in or at least ask someone to help, buy really easy to care for clothes and swap your beloved heels for sensible flats. Or if you’re a man the non iron shirts start to look appealing. But no matter what you do at some point you have to get honest about how your life really is, not how you want it to be.
I’m sorry to be the bearer of such news and in a weird way it is the first step to acceptance, reframing how you view the world, will in the end I hope allow you to find a way of having your cake and eating it, you just choose a new cake and go from eating it all in one go to slicing it up and nibbling. I’ve never been very good at nibbling, so id rather has two cakes but that takes me back to denial. How on earth did I stray into cake?.
Bear with me I am making a point, if slightly long winded, choice and honesty - When you leave behind denial and trying to live life as you once did at some point there is a very big chance you will hit depression and anger. It’s perfectly natural. It can manifest in many ways, I hid for ages at first I proclaimed loudly I had fibro, I talked a good talk about how I accepted it, and was ok with it and glad it had a name. I really did talk utter bollox at times. I apologise now to the friends who had to stand back, listen and wait for me to fall, while I got lost in a very dark lonely place. The truth is no matter how much I said the words, I didn’t believe them. My anger was directed at me, I no longer believed in me, I had absolutely no bloody idea what to do.
That first winter when I was newly diagnosed what was probably the loneliest destructive place I have ever been in, no matter what I said to the contrary I was lying to myself and those who loved me. I lived in a small council flat, that first winter was cold snowy one, so I was housebound and besides my sweet friend who I have been saving the spoons for (Its her wedding tomorrow whoop whoop) along with my best bird and Mrs woman I rarely saw anyone, I rarely ventured out, I comfort ate, my house was a mess, my relationship with my son was at an all time low. And of course my Fibro was out of control. Spending hours on my soda, barely able to move and look after myself is a terrible situation to have been in.
I became locked in a world of pain, fear and loneliness. I was facing living with this for the rest of my life with no worth or choice. As the spring came so did hope, I don’t really know where it flowered from, or how it came about perhaps it was at some deep level I knew that I did have a CHOICE - I could give up and get swallowed up in a world of passively waiting for others to help me or I could find a way back to being a woman of worth. I had no idea how I was going to do it, or what my life would look like. But I knew one thing with certainly I would never allow myself to go back to where I had been.
This blog entry has become a bit of an epic, What im trying to say is be honest about where your at, even it’s only to yourself. Its ok to be angry, fucked off, sad, scared, mind bendingly pissed off, or euphoric (although if that’s the case id say check your medication side effects) There is support out there, but until you become your own advocate no body will be able to help. Simply because you won’t be ready to listen. In your head even if you ask for it somewhere you will be saying YEAH BUT!
I still say yeah but, and don’t do as I’m told and fall over, use my spoons up on all the silly things and not always the important stuff, I’m human and I get it wrong and I’m still learning. Tomorrow I will be a bridesmaid, I know I won’t be the last standing – but I will be there and I will have a ball and be the best I can be. Next week I will be a broken wreck. but sometimes its worth it – in the life of a spoonie its all about using the only real the choice you do have, do nothing, use your precious energy little by little or sometimes to empty the whole dam drawer and go for it. But it’s being honest about it and not resenting or wasting energy on thinking why me.
This is an amazing article. I relate in every way. Thank you for posting it.
ReplyDeleteThank you :) its been a while sisnce i re-read this post. Im glad you enjoyed it
DeleteI’ve never been very good at nibbling, so id rather has two cakes but that takes me back to denial. How on earth did I stray into cake?
ReplyDeleteI'm commenting on an old post so I hope you get notification, but I can't resist after your sentence about two cakes: do you know this book called TWO WHOLE CAKES? It's a fat politics book, not disability politics, BUT Lesley is so damn cool and intersectional that she mentions "spoons" in the book. Not even explained, just the term "spoons" used as if everyone knows it, as if everyone *should* know it, and I love her for doing that.