The Spoon Theory and real life
The spoon theory was developed by Christine Miserandino. (1) Spoons are used as a metaphor to describe the units of energy available for people living with chronic illnesses. Each day everyone has a limited number of spoons available for the day. When spoons are used a person has to rest to replenish them. Therefore, people with chronic illnesses need to plan and manage their days.
As there are only a specific number of spoons available people may choose to use their spoons differently to what is sometimes expected. The picture to the right was designed by the Chronic Fatigue Blogger, Jessica: http://sweetbriarsisters.com, to demonstrate this point.
I have learnt some personal lessons along the way that I feel need to be added to this theory.
Many people don't realise that activities of daily living (ADLs) such bathing or brushing your hair can steal spoons from a person with chronic illness where a healthy person would not have to even think about having enough energy to survive a shower.
In my experience there are also stealers that cannot be predicted, such as heat waves, flu, sensory sensitivities, social situations, stress, anxiety and fear. Mental, visual and auditory fatigue are often stealers that are forgotten about.
So rest and sleep will recharge spoons? Right? Unfortunately not always! Just like Supergirl can blow her energy out and then need to take days off to recover and lie under her natural energy source (sun), MG warriors can also blow out their energy. In some cases I have blown out my energy so badly, I have relapsed. Last year I travelled to Cape Town to help my sister with arranging her 21st birthday party. I took on too much and therefore started a downward spiral which ultimately lead to being hospitalised.
Likewise, if you only rest this will also not guarantee that your energy will be in top form when you need it. You need to move, exercise and have a passion for keeping you alive, therefore, you need to learn to budget your spoons wisely.
Make sure to discuss your personal needs with family, friends and your place of work. The diagnosis of MG means that you qualify for reasonable accommodations at work, but you have to consult with your human resources department regarding your needs. If you struggle to do this, consider consulting a job coach or an occupational therapist trained in vocational rehabilitation. The Job Accommodation Network (JAN) is a great resource for individuals and companies to get ideas about reasonable accommodations for specific disabilities. (2)
Tips for Spoon Saving:
1. Have a good sleep and rest routine.
Have time scheduled during the day where you can recharge. Activities such as meditation, reading a book or sitting in nature can be very helpful.
2. Know your Spoon stealers.
The easiest way to do this is to keep a journal of what you feel drains your energy.
3. Don't over commit yourself.
Learn to say no. One thing I have learnt to remind myself is that I'm not being selfish, I'm being responsible for my health.
4. Plan your daily schedule around your current spoons.
I normally shower in the evening especially if I have to wash my hair. This allows me to let my hair dry naturally and allows me to recover that set of spoons overnight. Therefore, I avoid using plenty of spoons in the early morning, in order to conserve energy for the day.
5. Arrive early / avoid traffic.
While I like being on time, I am not a morning person. Arriving early gives me the opportunity to sit in my car or alone in my office for five minutes in order for me to catch my breath, ground myself and organise my thoughts for my next activity. Negotiating flexible work hours with your employer can also be a helpful solution as you can self-pace your work.
6. Get help for tasks that are a low priority in your life.
I hate ironing! I'm fortunate to be able to pay someone once every two weeks to do that for me. I love dog agility, therefore, I keep spoons available for me to be able to go to Wednesday classes, even if this means having leftovers for supper. Ask for specific help. Don't assume people know how to help.
7. Use tools to reduce your energy input.
Instead of grating things I use a Julienne Mill by Moulinex. Dishwashers, electric screwdrivers, electric toothbrushes are also regularly found in a spoonie’s home. My latest love is a rechargeable light bulb that turns on with a remote control for when we have power outages.
Smartphones are great tools for communication. If your vocal cords are struggling, rather ask others if you can text them if you need to chat. There are also great apps that work as medication reminders and daily planners to help you keep organised.
8. Put up and clean out.
While you may not need them daily, grab rails in the toilet and bathroom help to reduce the energy you need to use to complete these intimate routines. I recently started using a walking cane at work, not because I can't walk, but because it gives me the confidence to be more independent and tackle steps that do not have grab rails.
Remove loose rugs, or put non-slip bases to on mats to avoid falls.
9. Wear good shoes.
I love my shoes, but lately, I have a standard four pairs that I can use without having to budget spoons just for walking in a specific type. High heels are out of the question. Make sure that your shoes are lightweight, supportive and easy to get on and off. Try making the trade-off easier by investing in comfortable shoes that also match your style requirements.
10. Keep organized
Pre-packing lunches for the next day, having an organised pill box and setting out the clothes I want to wear the night before cuts out the stress of having to try to deal with these things in the morning.