Everyone may have 24 hours each day, but living with a chronic illness quickly devours chunks of that time with incapacitating symptoms as well as all the things we have to do to manage those symptoms. Sometimes being sick is a full-time job and during the rough patches, it can become an all consuming 24-hour shift with no time off position.
I think one of the biggest secrets of living well despite chronic illness is figuring out a way to not let being sick bring life to a halt or cause chaotic interruptions. Everyone has sick days and for its important to see myself not as having a sick day every day, but to reserve most sick days for the same reasons other people use them – common infections or severe flare ups in my condition. The rest of the time, life needs to carry on despite pain, exhaustion and other issues.
My personal strategy for getting things done each day is all about scheduling. I use a calendar and to-do list to keep me on point. About twice a year, I clear a morning and sit down with both of these and a clear document and I look at my life, productivity levels and time like this:
1. Draw up a basic daily schedule
I draw up a weekly schedule by creating blocks of time by category with each block taking up 2-4 hours. I start with time for biological things that are unavoidable – eating, sleeping and hygiene. I then schedule time for work, study, appointments and parenting, all the necessary things in life. Next I find slot for relaxation and here I include solitary activities I enjoy, as well as quality time with loved ones and friends.
- Biological: sleep, eat/cook, wash, dress
- Necessary: work, responsibilities, study, medical appointments, exercise/physiotherapy sessions
- Daily grind: cook, clean, errants, chores
- Pleasure: hobbies, socializing, breaks
Having done this, I am left with two categories that I do not schedule in: things I call the daily grind. This includes things like cooking, cleaning, shopping, errands and chores. Then there are health related activities – these are the things I do to keep myself as healthy as can be, like exercise, treating symptoms myself where I can, meditation and relaxation. There are two reasons I do not schedules these into big blocks: 1. They are more unpredictable – I don’t know when I am going to have symptoms flare up that will require me to take some time out to manage them and 2. these are usually energy intensive activities that I cannot accomplish within big blocks of time. Instead, I sprinkle these throughout my day in 5 – 15 minute slots within the big blocks.
For example, if I am spending my morning sitting at my desk for three hours, I use the short breaks I take regularly to do some exercises or get something practical done that gets me up and moving around. Conversely, if I am spending my time quite actively whilst parenting and getting things done around the house, I also take regular short breaks and use them to sit down, put my feet up and maybe do some on-line shopping or reply to e-mails. This kind of loose, flexible schedule works well for me, except when symptoms flare up and suddenly my hour at the gym is not an achievable goal after lunch on a Friday. Now what?
2. Create flexible options for each time slot
One of the big issues with chronic health conditions is that they can be unpredictable. I have found it very helpful to create different degrees of each thing that I do, so that I can stick to the same routine most of the time regardless of how I may be feeling. I use a 5-point scale based on how much I feel capable of doing: Very good (5), good (4), okay (3), not okay (2), terrible (1) not up for anything (0). I then go through my routine and make sure that I have a selection of activities that would be do-able regardless of how well I happen to be on any given day at any given time.
For Example: Getting dressed
Getting dressed is often a high intensity activity for many people with chronic health issues. If I had to shower, get dressed, put on make-up and style my hair every morning, that would be the only thing I did every day. Instead, here’s my list:
- 5: Shower/bath with hair wash or shave, 5 minute break, get dressed, brush hair and teeth, 10 minute rest
- 4: Shower/bath with hair wash or shave, 5 minute lying down break, get dressed, brush hair and teeth, 10 minute rest
- 3: Shower/bath without hair wash, wrap around towel and lie down for 10 minutes, get dressed lying down, brush teeth lying down, brush hair, 15 minute rest
- 2: Skip shower, get dressed sitting, 5 minute break, brush teeth in bed, 5 minute break, brush hair sitting, 15 minute rest
- 1: Skip shower, get dressed lying down, 5 minute break, brush teeth in bed, 5 minute break, brush hair in bed, 15 minute rest after
- 0: Stay in pyjamas, brush teeth lying in bed, 10 minute break, comb out hair, no styling, 20 – 30 minute rest after
Scaling activities means that I can still do what I set out to do most of the time and I don’t fall behind schedule because I’ve over taxed myself and need long rest breaks to compensate. I also vary activities on specific days to avoid hugely overdoing things. For example, if I know that I have an intensive meeting in the morning, I keep all activities before and after on the easiest level.
3. Make continuous small improvements to the system
One of the most valuable lessons I have learned is that making environmental and life-style changes, i.e. changing how you do things, can make tasks easier to carry out. I spent 30 minutes each week looking at one particular activity and aim to make a small improvement to make it more accessible and easier to do. I focus on three things:
I have schedules and plans for everything. Exercising regularly is much easier with a set program worked out and written down in advance. Meal preparation is much easier with a meal plan, set recipes and all ingredients in the kitchen. The more life runs on habits and routines, the less effort and motivation is required to stick with the plan.
Two: Minimize the effort needed
The more I do, the more time a particular activity takes and the more tiring it is. I aim to minimize the effort and intensity of daily activities so that I have more time and energy to do more things.
Things that work for me: If I can do something sitting down instead of standing or lying down instead of sitting, I do so. I keep useful items at hand and create little work spots throughout the house. For example, I keep toothbrushes, toothpaste and a towel next to the sink that has a perch chair. I have a reading seat next to a drawer that holds reading glasses, a reading light and my e-reader (with charger and charge point).
The most important thing is that I try to it easy to carry out an activity without a lot of rearranging required – don’t put things away that are used regularly. If this is not possible and help is at hand, ask someone else to move things for you before you hit that point in your schedule.
Three: Make use of ergonomic, suitable equipment
There are so many ways of making things that were impossible or hard to do easier these days. I work hard to invest the effort, time and resources to adopt new things into my day-to-day life. I always have Sugru, Duct tape and Velcro because a small adjustment here or there can make the impossible unbelievably easy or at least possible again. If hacking things yourself falls outside your area of expertise or ability, ask for an occupational therapy assessment of you and your home if possible or contact a charity like Remap or SpecialEffect who specializes in appropriately adapting and even making things to suit an individual’s specific requirements.
One of the most difficult aspects of living with a chronic illness is the unpredictability it brings, but I find that when I actively work to keep my life simple and organized, I do much better and I feel much better. Symptoms and how they are managed does not have to consume life and often, even when I wake up thinking today nothing is going to get done, by having a plan and schedule in place, what would previously have been wasted days end up still being quite productive.