Wednesday, 8 November 2017


Spoonies!  I don't really get the metaphor.  I understand the point and the concept but for me personally, I just don't get it.  The Spoon Theory, an essay written by Christine Miserandino in 2003, visualises the energy used by people with chronic illnesses by equating daily tasks with a number of spoons.  You start the day with a certain number of spoons and then if you run out of them, you just have to wait until your stock is replenished.  Like I said, I just don't get it.

Here is the link for more information for those of you who want to read more about the theory.

I'm a spoonie!  Not only do I have a chronic illness, but it's also an invisible illness.  That means that people can look at me without realising that anything is even wrong and they do!  People may not realise it, but they judge and make assumptions about people even if they don't realise it.  Let me explain, if you're sitting on a bus and an elderly person gets on or a pregnant lady or a person with visual aids i.e. walking sticks; crutches; blind cane; assistant dog etc., then there's a good chance that you would offer that person your seat but if I get on a bus, walking unaided with no visual disability then you make the assumption that I'm perfectly fine.  You jump to the conclusion that I don't need/deserve any additional assistance.  You pre-judge my health and conclude that my body isn't attacking itself from the inside out, that I don't suffer symptoms from my head to my toes due to either one of my several autoimmune diseases or the equally-as-difficult medication that I have to take to try and control it.

I'm constantly on the edge, I don't fit the classifications to be disabled yet I have a disability.  I look normal on the outside while my inside self-destructs, I'm capable of working but I'm not able to do certain jobs/tasks but most of all, I'm constantly on the edge of an emotional outburst due to thoughtless, inconsiderate and judgemental people.

Now don't get me wrong, I don't expect anyone to be psychic and I don't go around sporting a neon ‘spoonie' badge but I just get frustrated with how little understood chronic/invisible illnesses are and how difficult they are to live with.  I mean, how many of you have ever tried using a disabled toilet when you're unaided? The looks, stares and judgements I get is like I've just asked for their firstborn child!

And if the diseases aren't bad enough, the medication is surely the work of some deranged professor with a twisted personality!  Chemo drugs, abortion pills, steroids, biologics (be careful they may cause cancer!) And a whole host of other man-made evilness each with their own anti-side-effect side kick!

I'm frustrated!  I'm sick and tired of being sick and tired!  I'm annoyed with drugging myself with God-knows-what to be able to function even remotely normally.  And I know, I'm lucky that as yet my illnesses are progressing slowly and are 70% under control most of the time but at the back of my head, I'm always waiting.  Waiting for a flare, waiting for the day when my body rebels, when the medication stops working, waiting for a new disease to mutate from the existing ones.

I can't plan, I can't relax, I can't anticipate because I live on the edge – of knowing and not knowing, of living and existing, of ok and bedridden and I hate that.  I hate the power and control that my body has over me and I hate not knowing what tomorrow will bring and when the day will come when my diseases control me and not the other way round.


  1. Replies
    1. Lol... Thankyou... I'm glad you understand 😊

    2. Oh yes! One day my husband “caught” me limping toward a store - laughed & said I didn’t have to “pretend” to look disabled. That ankle that bothered me is waiting to be replaced! I just hadn’t complained enough about it for him to worry about it yet. It’s a hard road we’re on but I still put on lipstick & try to act normal.

    3. Why do we have to try??? It's so frustating! Just because things are invisible why should we have to hide them?!

  2. So very,very true. These invisible illnesses don't like to be alone they keep bringing their mates along to join the party !!