Home > big society, depression, mental health, ukuncut > How I Became A Spoonie

How I Became A Spoonie

I’m not having a great time at the moment, the black dog has me in its maws and all that entails… but! When you’re struggling it’s wonderful to read something which reflects some of what you feel and clarifies thoughts and feelings in one easy to find place. It also helps in that you can show it to others and say “Look, that” as a way of explaining your strange behaviour/actions/inaction. Earlier today I found such a thing via a link in the latest blog post by @suey2y on that there Twitter. Sue writes an insightful, honest and important blog at Diary of a Benefit Scrounger chronicling her life with Crohn’s and how it affects her personally and politically. I really do recommend a read – lately, she has been looking into the changes to welfare being thrust upon us in the name of “necessary cuts” by a government seemingly intent on destroying what little there is available to help those who need it. It makes for some angry reading.

Contained within Sue’s latest post was a link to an article on “spoonies”, a term I’ve seen used but never fully understood the meaning of. Entitled ‘The Spoon Theory’ and written by Christine Miserandino who suffers with Lupus, it tells the story of how Christine one day explained to a friend how her illness affected her by using spoons. Yes, spoons. And it makes a whole lot of sense. It can be found here and I really recommend that you read it for an insight into how sufferers of chronic illnesses try to cope with life, the universe and everything.

As I wrote above, I’m not exactly on top form right now – my depression has a good, tight hold of me and has confined me to my flat. Sounds melodramatic? I know, I feel slightly stupid as I write it, but I can only give you the facts. Use the Spoon Theory, though, and it all makes a bit more sense. Christine uses the concept of having a limited number of spoons available to parallel the choices and decision making that people with chronic conditions face every day; she also outlines the sometimes exhaustive planning this entails. I understand this as, even when I’m feeling relatively alright, I still have to think ahead and plan things in order to avoid complications. Going out to a gig or meeting friends? The journey must be planned in order that possible obstacles can be avoided, the venue needs to be assessed, and an exit strategy needs to be in place.

At the moment, most of my spoons go on existing; on getting out, or off, of bed; making something to eat; remembering to take my meds – this leaves precious few, if any, spoons available for other things in life, such as leaving the flat, going to work, even talking to friends on the phone. And so I have to plan things very carefully indeed. Today I managed to get out of bed, made eggs on toast and I have taken my meds; tomorrow I may even make a proper meal. But… On Thursday this week there is a joint leaving do being held for friends and colleagues who, like me, have chosen to take voluntary redundancy from our employer. My last official day is April 14th, but due to leave accrued my last working day is this Friday coming, and it would be great to say goodbye properly to people I have a lot of time for and have enjoyed working with. This is where the spoons and planning come into play. I have to think very carefully about things. The journey shouldn’t be too much of a problem – it involves two buses but isn’t horrendous, the venue is in an area I know very well, and it would be fantastic to see people. Look back, though, and see that most, if not all, of my spoons are going towards the basics of life at the moment. It would only take one bus journey to go and see some close friends in their respective abodes (much “safer” than a pub), but I haven’t even managed that in a while. Hell, I don’t even have to catch the bus, they could come to me, if I let them…

This is the problem. What if I miscalculate and run out of spoons? I have no doubt that I would be looked after and helped by my friends, but the damage isn’t only in having a turn and being a momentary “burden” on them. The real damage will be done on the inside, to my invisible illness. I have attempted to act beyond my capabilities before, and I know the impact this can have on my mental well being. At times like this life becomes one big risk assessment.

And I can’t risk being driven even further down as there is another gathering I have been invited to. The father of one of my friends died last weekend and I want to be there to support him at the funeral. This is one spoon that I have to allocate.

This doesn’t mean that I won’t go to the do on Thursday, but it does mean that I have to think very carefully about it and about the risk involved considering my current state. Reading about the Spoon Theory has helped me with this in terms of clarifying my thought process and perhaps also in helping to better explain my illness and how it affects me. I am now a spoonie. I understand that a major driver in my decision to apply for voluntary redundancy was taking into account the detrimental effect the shenanigans at work over the last two years has affected my health and continues to – I simply don’t have enough spoons available to risk my health further by working there.

Finally, on a more political note, the choices that may seem straightforward to us can in fact seem like an endless conflict to others, a conflict between what they would like to do and what they can do. Right now the already limited number of spoons available to people with chronic conditions is being threatened by the actions of this government and people will find their choices becoming even harder to make; already difficult lives will become even more difficult. To learn more about what’s being done you can read blogs such as Diary of a Benefit Scrounger, and also take a look at campaigns such as Keep Our NHS Public and UKuncut. If, indeed, we are all in this together, then we need to show the government exactly what that means.

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