Spoonie life – living with a chronic condition

I’d heard of this term before and knew it was something to do with being ill but never really understood what it meant. I’m not sure what prompted to me to google it the other night, but it’s actually a really cool analogy that helps the healthy and well understand what others who are struggling with their health are having to contend with on a day to day basis.

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. It was developed by Christine Miserandino in 2003 as a way to express how it felt to have lupus. You can visit her blog at https://butyoudontlooksick.com/

The idea is that we all start the day with our spoons. Each spoon represents a task that needs to be performed in order for the day to proceed. For people with a chronic condition, the spoons get used up pretty early on in the day, leading to fatigue, exhaustion and depression if people aren’t coping and getting the support and understanding they need.

And we’re not looking for pity, or even sympathy here, we’re just asking for understanding and an appreciation that each day can take more out of some of us who are dealing with daily challenges. Here’s a few examples using my day.

• Spoon One – Didn’t sleep much so waking up tired already. Setting numerous alarms if I have to get up and having to set them early to give myself time to wake up properly.
• Spoon Two – Skin will have crusted and flaked up over night. Sometimes this happens during the day and over night. Excessive flaking is common for people healing deep skin layers due to damage done by topical steroids. If I’m planning to go out this may mean I need a long, gentle bath to help loosen and remove some flakes so I’m more comfortable, flexible and feel more normal with less obvious proliferation of flakes showing on my face.
• Spoon Three – Every morning I over heat, particularly after bathing or showering. I’ll usually need an good hour or two after bathing to sweat, sitting in front of a fan usually, chilling till I feel calm and cool enough to put on clothes. Rushing this and getting dressed anyway can lead to itch attacks, more damage done to skin, and I just can’t function, work, concentrate, let alone actually drive or anything when I’m this over heated.
• Spoon Four – Trying to heal my skin means I’m eating a clean, fresh and natural diet. It also means it can take me longer to produce food and put meals on the table.
• Spoon Five – Work tasks can take me ages, especially if I am really itchy. I have to check, double check and triple check my work because concentration is in short supply. It can take me far longer than it should due to regular interruptions, getting ice packs, cooling down, changing clothes, moisturising, etc. etc.
• Spoon Six – Hoover up the excessive flakes from last night
• Spoon Seven – Change bedding again after a night of hot sweats and blood on the sheets
• Spoons, spoons, spoons. I’ve run out of spoons!

Each day you have choices, a healthy person wakes, gets up, washed, dressed and goes about their day. They’ll have challenges too of course, but being a human being isn’t one of them.

When just existing is hard, when you feel like you are getting by, surviving, struggling with life, this concept of normality seems so far away and so unachievable, it can be easy to feel jealous of all those perfectly well humans just doing life.

The more things a person with an illness or disability needs to do in their day, just to function, adds to the spoon life, hence the term spoonie.

A healthy person doesn’t need to worry about spoons, they can just continue their day with an endless supply. They won’t run out of spoons.

So I guess this blog is a little bit about what life is like managing chronic or severe eczema or going through Topical Steroid Withdrawal but also about anyone you know with a condition that complicates things, like MS, lupus, fibromyalgia, cerebral palsy… the list goes on.

These conditions often come with a good dollop of pain and discomfort to manage too which in turn add to the exhaustion and require the spoonie to remember not to use up all their spoons too early or the pain might floor them.

Living with anaphylaxis adds layers of planning, checking, preparation, emotional anxiety and strength. The strength to say no, to not eat food you’re not sure about, to explain your allergies again, to demand safe food, to alert someone to a potential risk.

When all you want to do is experience life as the well people do. Just to be a human being.

So be grateful for your health, for a good night’s sleep. Be grateful for your skin, your body, your mind. Be grateful for the robin singing in the bush outside, for the sun shining and the trees you can see around you. Be grateful for those small things because they really make life rich and they don’t require spoons to be enjoyed.

I am feeling really grateful for this opportunity to let me skin heal through topical steroid withdrawal and believe that I will heal. I may always have eczema but the intense ridiculous roller coaster of symptoms will ease and I cannot wait to see what my skin can be like.

So if you have friends of family who live with a chronic condition, be mindful that they may show you a smiling face and hide the stuff they need to do each day. They may be tired and not let you know. Have some empathy, being flexible and understanding if they pull out plans, seem unavailable when you need them or are constantly tired. They don’t need to to do anything or necessarily help, although that can be wonderful, they just want your respect, understanding and your spoons please if you could pass some over to us spoonies…

If you’re a spoonie…

You may like to connect with other spoonies!

• Iron Spoonie – Father, Iron man and patient advocate!
• One man and his catheters – Mark’s blog about a positive life with MS

You may also be interested in reading…

• 10 tips for caring for someone with chronic eczema or topical steroid withdrawal
• Topical Steroid Withdrawal – Frequently Asked Questions
• Sleep tips for eczema and topical steroid withdrawal

Photo by Miguel Á. Padriñán from Pexels