I know some people might read my blog and think " Oh, look she's talking about going shopping and going on holiday, so maybe she's not all that ill." Well I like to think that I write or moan and whinge about hard times too and just how much those good moments need orchestrating and how much they can really take there toll on fatigue and pain levels. When I say I'm going on holiday I hardly move more than 100m from my bed and am lucky I know the place and people well to feel comfortable and they are very understanding. It is not code for a club 18-30 full on party holiday. And when I say I'm shopping it generally means 'to get me out of the house' or to get something I need. Definitely never more than 2 hours.
So today I wanted to give you more of an insight into what it's actually like to live with a chronic illness. Away from any emotions, or lists of symptoms but what it is actually like to 'deal' with on a daily basis. In essence apart from the obvious or not so obvious to some how does living with a chronic illness differ from living without one? To benormal so to speak. This brings me on to finally talking about those spoons I mentioned. Or to be more exact about Christine Mierandino's spoon theory because to be frank it is a great description.
To give you some backround Miserandino suffers from Lupus and the spoon theory was born when out with a friend at diner her friend asked what it was like to live with. She knew all the ins and outs and had supported her for many years but what it was like to 'not physically but what it was like to be me, to be sick.' www.butyoudontlooksick.com At first she was at a loss, yes she could reel off symptoms but she thought 'how do I answer a question I never was able to answer for myself? How do I explain every detail of every day being affected and give the emotions a sick person goes through with clarity.'
What happenned next was that she proceeded to collect as many spoons as she could, probably looking and feeling like a mad woman and placed them in her friends hands. She 'explained that the difference in being sick and being healthy is having to make choices or to consiously think about things when the rest of the world doesn't have to. The healthy have a life without choices, a gift most people take for granted. Most people start the day with unlimted amount of possibilities and energy to do whatever they desire, especially young people for the most part, they do not need to worry about the effects of their actions.' Remember the post exertional malaise I was talking about it can strike after the smallest of actions. Today I am aching a lot from just sunbathing and writing yesterday. It makes life with a chronic illness a constant battle with your conscience about whether you shoud do something or not. There is no just 'popping' anywhere or acting on the spur of the moment. There is a lot of thinking and planning which in itself is drainng not to mention be a drain on your enjoyment of life. Take for example having to choose between using a commode or whether you have enough energy to walk to the bathroom. Whether or not you get dressed that day or shower. All of which are questions that we ask ourselves daily. Sometimes when it comes to big decisions like going somewhere with family or friends and rule that it's just too much for you, you can run the risk of upsetting or alienating others or being known as a let down.
Let me use an example. Last weekend I went to my cousins for dinner, however firstly we were supposed to play a muder mystery game. Okay, it would have been played around a table but it would have required a lot more brain power etc. What I had to make them see was that to do that was just energy that I did not have. To be able to get there and enjoy dinner and laughter was going to take up a lot of energy as it was. Just the 40 minute car journey would be a lot. But it was something that I was determined to try to do and luckily on the day that I had more energy. Luckily they understood about the game and we did have a great time but I definitely felt that seemingly simple event had took a lot out of me. Christine Miserandino explains that if you know a big event is coming up then you need to also plan a 'scheduled crash landing' www.bbc.co.uk/news/blogs-ouch-22972767 this is a 'rest period to get over non standard events such as weddings or hospital visits.' However of course it also depends on how much energy that you have on that day and how much you do on that day.
The BBC recently blogged about the spoon theory on the link above and say that spoons have become a 'quirky' way of measuring energy for sufferers of a chronic illness. For each decision we make it is like 'deciding in advance which tasks are worth "sacrificing a spoon" for.' But back to Christine's story. So she's handed her friend the spoons. In this instance she had 12 spoons but that's just a random number not scientific. She explains that by using the spoons she 'wanted something for her to hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else... being in control.'
She then asked her friends to go through the activities of her day and her friend launched straight into an active diatribe. Christine soon asked her to slow down and realise that you can't just wake up and get straight into your day when you have a chronic illness and for many others too. There are times that you have to drag yourself out of bed one limb at a time. Having a wash might cost you one spoon or a shower maybe two spoons with having to stretch a lot more. Then to dry your hair would cost you another spoon. So that's around 3 or 4 spoons and you're not even downstairs yet. If you cook a breakfast that is possibly two spoons or if you have cereal or something you don't have to cook that could be one spoon. Then of course there is going out or going to work. Driving will take up a spoon and who knows what you're going to face at work. A more productive day or dealing with lots of others will certainly use up more spoons than a quieter one. Somethings are beyond your control. Then of course there is what to do after work. How many spoons do you have left and what is the most effective way to use them? Fortunately or not I don't have to contemplate these things at the moment. As much as I really would love to. I can't even imagine it. Or in other terms I do not have enough spoons. Right now I just about have enough spoons to get around the house, to see family when I can and the occassional couple of hours out. No that's not everyday. It's about realising that things aren't as simple as 'doing something' or 'getting something done' that there are a 'hundred jobs in one.' Of course everyday is different; different circumstances; different symptoms as Christine explains 'some days I have more spoons than most. But I can never make it go away and I can't forget about it; I always have to think about it.' There is a way 'sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons".' You are already putring yourself at an advantage and who knows what tomorrow could bring through symptoms or circumstance.
By using this method Miserandino really made her friend see the true all consumimg scope of having a chronic illness. It actually made her quite emotional and made her feel sorry for her. As they left the cafe Miserandino pulled a spoon from her pocket (what a thief) and said that it is always good to try and keep a spoon in reserve too. Just in case. No one knows what is ahead of us. I have to agree that this is a great description, no matter how whacky it sounds. It has really caught on too and is widely used in chronic illness forums and communities. With many people calling themselves 'spoonies'. Well I did always want to be Tina T Spoon from Button Moon. Tweeters can use #spoonie to see tweets from others and connect with other sufferers.
So there you have it the spoon theory. Basically it's about assessing your energy levels to see how many 'spoons' you have that day or moment and making lots of decisions about how best to 'sacrifice a spoon' that is going to impact your health and energy levels afterwards. She also jokes that when she can spend time with friends and family 'that they should feel special when I spend time with them because they have one of my spoons' or maybe more. In future blog posts I'll talk about how to learn to pace yourself and how to sacrifice those spoons in a way that is best for each individual. I hope that this post has enlightened you. It enlightened me and I have a chronic illness. But that is what it's like to have a chronic illness, that is what it's like to be me.