I was diagnosed with Fibromyalgia almost 15 years ago and since then have been searching for ways to enable me to live my life as a busy mum of 7 as normally as possible despite almost constant pain, brain fog and fatigue.
I've undergone cognitive behaviour therapy and have been prescribed drugs to lessen unpleasant skin sensations and to help me sleep and deal with the depression and anxiety which often comes hand in hand with disabling long term health conditions.
But by far and away the most useful and effective tool in my arsenal agains Fibro is counting spoons.
Yep - you heard right. Spoons. But no cutlery is actually involved. It's just a simple way of pacing, deciding what activities to prioritise to get through the day without crashing and burning.
Spoon theory is a metaphor that is used to describe the amount of mental or physical energy a person has available for daily activities and tasks. The theory was developed by Christine Miserandino as a way to express how it felt to have lupus.
The theory can be put into practice by anyone with a fatigue condition including ME, chronic fatigue syndrome, long Covid, Lupus, Fibromyalgia and more.
Imagine you start each day with ten spoons in your hand. Each activity will take a number of spoons. You dont want to run out of spoons halfway through the day.
As an example, I know from experience that if I am in flare up, having a shower and washing my hair will use up probably three spoons. I can't afford that so will just have a wash instead. That will hopefully leave me with enough spoons to get downstairs and interact with my family.
Over the years I have become quite adept at gauging how many spoons each activity. might use. I'm going to share some top tips on how you can save spoons to help you live your best life:
- Plan ahead. If you are responsible for food preparation in your home plan ahead for the days when you might have other activities which require energy. On your better days batch cook if possible and freeze portions of spag bol, curry, casseroles etc which can be defrosted for days. Or keep a few easy meals in the freezer. Ready meals have improved over the years and you can pick up healthy and tasty options which you can just bung in the microwave or oven on bad days. I often prepare the evening meal in the morning as I know that by mid afternoon I am often starting to flag and it's all too tempting to order in an unhealthy, expensive takeaway.
- Use physical aids. It can be hard with an invisible condition to be brave enough to use physical aids in case people judge or even challenge you. Be brave and if you are challenged while using an aid or parking using a blue badge use it as an education opportunity. I have a wheelchair which isn't often needed but has enabled me to enjoy family days out which might otherwise have been too exhausting. Join your local shop-mobility scheme if possible where you can borrow wheelchairs or scooters. Mobility scooters are not just for old people! I find going up and down stairs can use spoons quite quickly so if this is true for you too why not consider a stair lift? There are lifts for almost all stair designs - you can find stairlifts for narrow stairs here.
- Know when to say "No". It can be hard for people who don't understand invisible conditions to remember or even believe that you are limited in any way and may expect more of you than you are able to give without harming your health. I'm talking about both emotional and physical demands.If you had a broken leg no-one would ask you to dig their garden over or clear snow. You have to learn to be honest with yourself about what you can cope with and learn to politely but firmly say no.
- Learn shortcuts. No energy for hair washing? Try dry shampoo or a casual up-do. Use wipes for a quick freshen up. Make a flask of your favourite hot beverage to save trips to the kettle. Have at least one set of "flare-up" clothes with no fiddly fastenings. Even skipping shoe laces could give you at least part of a spoon back. Don't drive if you can be driven and get as much delivered as possible to avoid tiring shopping trips. I have everything from dishwasher tablets to my cat's flea treatment delivered now.
It can be particularly difficult at work if you are worried your condition might put your job at risk but employers are obliged to take disabilities into account and modify your work accordingly. It often works in their favour as if your work is manageable you are less likely to take unscheduled sick days which can leave employers short staffed.
Think about asking about flexible working. Especially during the pandemic more and more employers have become more receptive to new, more efficient ways of working. Cutting out the commute might give you more energy to spend working.
Be honest about how your condition affects you and people will be much more understanding rather than think you are letting them down or neglecting them. Don't be scared to ask for help or reasonable adjustments so you can save spoons.
Even a simple swap like asking a friend to pick up coffee and come over to chat for half an hour instead of meeting up at a cafe in town can make the difference between coping and crashing.