Many people with a chronic illness will have heard of the ‘spoon theory’; the idea that you start your day with X number of spoons (i.e. the energy needed to complete a task) and that every activity in your day uses those spoons up. It goes something like this :
Start my day with 12 spoons
1. Wake up and have a shower uses 1 spoon
2. Getting dressed, doing hair, putting make up on uses 2 spoons
Showering and getting ready is exhausting; for many people with MS, including me, the warmth of the water exacerbates symptoms. I love baths but they are a distant memory for me now, due to the adverse effect they have on my legs. My shower stool is my friend.
I usually try and rest for 5-10 minutes after my shower to allow my legs time to rest. Obviously, this is not always possible, for example if we are in a rush to get out. Struggling to get my legs into trousers is a sitting down affair, sometimes with the help of my hubby. Everything takes longer than it should… I yearn for the days that I didn’t have to think about getting ready and the impact that it has on my day. Yes, I could not bother with make up or trying to look nice but, you know what? I am still a 30-something woman and it is important to me to try and look my best. It is just a shame it takes so many spoons to do it!
3. Full day at work uses at least 6 spoons
Getting up at 6:30, driving 45 minutes to work then staying for 9 hours really takes it toll. I sit down when working but have to go from my office to my therapy room down the corridor several times in a day. I think constantly being ‘on the ball’, planning, assessing, working to deadlines and attempting to carry materials around means that I am on a constant state of alertness at work, I can’t just switch off and go for a lie down, no matter how much I feel that I need to!
4. Night time routine uses 3 spoons
Getting home, encouraging the kids to eat the lovely tea their Dad made, helping them with their homework, fighting with them to have baths and get their jammies on, books read and in bed. Then it’s time for table clearing and general tidying and making sure school stuff is ready for the next day.
And that is my spoons used up!
How lucky am I that my husband generally does the cooking and picking kids up so that I don’t have to use my spoons? But going out for a meal on a work night? Nope, no spoons left! Stay up slightly later than normal to watch a film? No spoons! I could potentially ‘borrow’ some spoons from the next day, but it means that I will have fewer to get through my day if I do that, so I can only really do that when I am not working the next day.
To be honest, I think that my working days consistently use up more than my 12 spoons – which is why my days off are spent sleeping, reading, crocheting and generally sitting or lying down whilst my lovely husband waits on me. Two weeks off work the other month was blissful; not because I don’t enjoy work but because it allowed me to actually have the energy to do more. Not anything too energetic, but things like doing some yoga, playing outside with my children, starting this blog, going out for lunch. Things that I would have done without even thinking of it, before my MS took a turn for the worse.
Having to count spoons means the spontaneity has gone – everything needs to be planned and counted for, opportunities weighed up to work out whether it is worth using up spoons for, potentially overdoing it and feeling worse for it. This is one of the hardest things to try and explain to people – the last thing I want friends or family to feel is that I don’t want to go out, to go out for coffee and have a social life.
I just have to make sure that the spoons are gonna last…. please can someone order me some more?!