With my chronic illness, I am not stuck in bed all day – but I am much more limited in what I can do. In this way, I am kind of stuck in between “sick” and “healthy” as we normally think of them, not really belonging to either.
Stuck in the middle, I am constantly having to make conscious decisions on things that are generally automatic when you are (acutely) “sick” or “healthy”. The four main balancing acts I have to manage on a daily basis are:
1. Don’t do too little, but don’t do too much.
Most of the time, I don’t need to be in bed all day – but I also cannot just get up and go, doing whatever I like.
I constantly need to find ways to be active, feel energized, and enjoy my day without going beyond my limits. This means I often have to rein in my enthusiasm and only do short, small activities with lots of breaks.
2. Letting what I need overrule what I want.
My body needs rest and lots of it. But I am still a human being and I want to see my friends, work for a living, be independent, be creative, etc.
I have to say no constantly – not because I want to, but because I have to. It’s easy when the invitation is something completely out of my abilities, but it’s agonizingly difficult when I am not sure if I can handle it or not.
“I have to say no constantly – not because I want to, but because I have to.”
3. Staying positive, but also accepting the pain.
I’m generally an “always look on the bright side of life” person. But if I ignore the inherent painful side of living with an illness, it eventually overwhelms me.
I am still learning to mindfully give attention to the sadness, fear and anger of being chronically ill. To give it space to be and share it with loved ones, and then focus my attention back on the good things.
4. Balancing improving my health and accepting my illness.
There are countless things to try to relieve certain symptoms. Some might work, others won’t. But I can’t always be looking at how I could possibly make it slightly better. I have to be able to accept how it is now, so that I can rest and try to enjoy the present.
There is a fine line between making changes that may benefit my health and struggling against what I cannot control to the detriment of my wellbeing.
The Balance Collection
The balancing acts above inspired the Balance Collection with a marble effect. Do you want to be reminded to keep more balance in your daily life?
As I go through my day, I am constantly making decisions about what to do, what not to do, and what to focus on. It can get overwhelming because I usually don’t really know the right thing to do.
There is no roadmap for how to deal with this – at least not that I have been able to find. I try to minimize anxiety by not dwelling too long on decisions, trying to learn from my mistakes, and, when in doubt, lean towards protecting myself from overexertion.
About the author
Hi there! I’m Susan. I created Claymeleon to tell stories about my life with a chronic illness through handmade polymer clay earrings. What started as a hobby to pass the time on sick leave has turned into a small business that hopes to inspire vulnerability through creativity. When I’m not creating, I can generally be found resting on the sofa or doing puzzles with a bucket-sized cup of herbal tea.
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