I was contemplating whether to do a blog explaining the Spoon Theory and how it relates to my energy levels, finding a life balance and such-like when I found this graphic on my Facebook news feed, from the wonderful ‘Spoon Shortage’.
Well, this was the shortest blog post ever… Kidding! Whilst that graphic explains one single day, every person who deals with a chronic long-term condition which causes pain/mobility problems and/or other limiting condition will know that each individual has a different experience (even with the same diagnosis) and that this graphic is great as a one-off, but really, it’s FAR too simple. Let me explain, using 12 spoons as a jumping off point as above.
Above would describe a normal work day for me, in which all spoons are used but none are left over and none have been borrowed from the day before or saved up to be used at a later date. So, that day is over. What about tomorrow?
Same again? It should be because I am working full-time Monday to Friday (yes, people with chronic pain conditions/disabilities can work full-time; it’s not one-size-fits-all like the media, government and anyone with no experience seems to think) so you’d think so, but no.
Every day is different. It starts from going to sleep. So, was it a good night’s sleep, or did I struggle to nod off? Remember, the starting point is 12 spoons, so:
Struggle – 2 spoons used before waking – leaves 10.
Easy sleep – 1 spoon used before waking – leaves 11.
Okay, then to getting ready and out of the door to work – how is my mobility? Do I need my walking stick? I don’t eat till I get to work, but my medications at this point don’t require a full stomach so I’m okay there. Am I at a 2 out of 10 pain level (that’s normal, every day for me – I am always in pain but you get used to it) or is it higher – 5 or 6? If it’s 7 or above it’s a sick day from work so we can discount that.
Okay (I’m going to have to start using bullet points):
- Struggle to sleep but not in too much pain means 2 spoons used on the journey to work. That leaves 8 spoons left.
- Struggle and in pain means 3 spoons used on the journey therefore 7 spoons are left.
- Easy sleep but in pain when waking means so 8 spoons left.
- Easy sleep and not too much pain when waking means 9 spoons are left.
I almost always struggle to stay asleep so have started to discount that from my spoon counting. This may be an error.
Sometimes I struggle to sleep AND wake throughout the night – that starts me off at a deficit of 4 spoons so I’m at 8 spoons by the time I wake. If I’m in pain of level 4 or more, game over, work is not happening. Luckily this is still very rare.
You will see from the bullet points I then have to assess how I am physically and predict from a basis of knowledge of my body how many spoons are left and how many I will potentially use throughout the day.
I’m not even at mid-morning yet.
My work is sedentary, desk-based but responsible and I have a very supportive firm. I am able to work the odd hour of overtime if needed, and they are always very solicitous about my welfare. I am very fortunate in this; I don’t actually know of any other person dealing with life-limiting long-term chronic conditions who has this level of support at work. However, every single day takes 3 spoons out of me if I am not in pain or at a level 2. The pain may increase throughout the day which ups the spoon removal to 4 or even 5.
This means I am left with anything from:
- Struggle to sleep and stay asleep/wake in pain at 6 spoons/pain increases to 5 spoons = 14 spoons and I’m having to borrow spoons from tomorrow to get home, or take four painkillers which each give a spoon back, getting me back to 10 spoons. 2 left for the rest of the day.
- Easy sleep/no pain on waking/no pain increase throughout the day = 6 spoons left for the rest of the day. This is GOOD but is also very rare. Generally I have trouble staying asleep.
- Most commonly I have an easy sleep but struggle to stay asleep and wake throughout the night. I wake up with the alarm clock not in too much pain, with the average of 3 spoons used. That means by the time I leave work I have used another three spoons, so I am left with 6 spoons to go home with. This is good. However, the lack of sleep has left me teetering on the edge of losing another spoon, so I need to be wary and try to keep one back, just in case.
Okay, so the journey home will take off another spoon, maybe two, depending on whether I have to stand on the commute or someone notices my walking stick and lets me sit. This does not always happen. This photo shows what is a fairly common sight on my commute.
Bags CLEARLY need the seat more than a disabled person/old person/anyone with a pulse.
So, by the time I am home from work I am anywhere between borrowing spoons from tomorrow to having 5 left for the rest of the day.
The further it gets through the working week, the more tired I get which has a knock-on effect on my spoon level. Friday will typically be 2 spoons less than Monday. I very rarely make plans on a Friday, as it is most likely I will have to cancel them.
I have to think ahead when planning – do I have anything arranged for the weekend? Better not do anything in the week then, as that will mean borrowing spoons so I won’t have any available for the weekend. If I do have an arrangement, better not make plans for either weekend surrounding it, as that will cause problems which may mean I cannot work during the week. Where exactly am I with regard to spoons spent/left? Quickly assessing in my head; can I take some painkillers and borrow the spoons they give me? Will the side effects of those painkillers be too much; when did I last take the pills so I can assess the possible impact? All these go through my head when making plans.
Sometimes, of course, I throw caution to the wind and just go out and have fun, regardless of the consequences. Those consequences still come, and I may have to borrow extensively on spoons and hope I held over some to pass onto the future. If not, oh well, many painkillers and a weekend in bed should help level me out again.
It’s a constantly changing balancing act. Spoon theory is complicated, and different for every person who lives with a chronic condition (in my case, three, each with different, interlinked impacts on my life planning).
I was considering drawing a graph to try and explain it. Having re-read this blog, I don’t think I could. Just imagine a bowl of spaghetti with numbers randomly attached to it. That’s close enough, I reckon.
Please share this blog if you have chronic conditions and/or know someone living with chronic pain etc. It may help you or those around you understand why sometime a last minute cancellation can’t be helped, and why all the planning in the world is useless if you simply ran out of spoons.