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.
- 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.