Many people with chronic diseases have what’s called an “invisible illness.” This means that although they’re very sick, they don’t have any visible signs of illness so many people assume that they’re not really sick at all.
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This is a constant source of frustration for many chronic disease sufferers. They’re always trying to get friends, family and co-workers to understand that just because they don’t use a wheelchair or look like they have a disability, doesn’t mean they’re not suffering from symptoms such as constant chronic pain and debilitating fatigue.
Kari Lingren wrote an article for The Mighty where she answers in great detail one of the questions she regularly gets asked by those who don’t (or can’t) understand what it’s like to live with a chronic illness: “What do you do all day?”
She explains how difficult is it for people like her to just get out of bed in the morning; how she needs a couple of hours to adjust from being asleep to being awake; to summon the strength needed to go and fix herself some breakfast. And her day doesn’t really get much better. Everything she needs to do takes up so much of her limited energy supply that it takes her a long time to recover from even the simplest of tasks. The biggest thing she can do all day is concentrate on resting so her body can begin to heal itself to start over again the next day.
Read Kari’s article “My Response to “What Do You Do All Day?” as a Chronically Ill Woman.”
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What do we do all day?
I find it helpful to have structure in my day, so that there is always something, however small, to look forward to, like watching Pointless at 5.15pm with a cup of tea.
*On awakening; relax and plan the day with a list of things that need doing, putting the most important, first. For me:-
* Dress in comfortable clothes that I feel good in.
*Have food delivered
*Plan a day of healthy meals
*Plan to walk if possible, and the days I can walk, I shop for top-up food in my local store, or have a coffee out.
*Prepare as much food for the day as possible, first thing in the morning.
*In between ‘jobs’ I relax my painful body in a reclining chair and put on the TV (holding a newspaper or book to read, is too tiring and painful). Whist in this position, I sometimes do stretching exercises.
*Bath in hot water at any time of the day.
Gone are my days of rambling; keep fit; holidays and hill climbing and once I’d accepted that, I was better able to be content sitting most of the day in my recliner, when I one time, I’d just become very depressed at doing so.