Having established contact with many people who are struggling with chronic illnesses like my own, I have been asked more times than I can count how I managed to study for a degree and now to write and work, while living with an illness. Admittedly this is more of a struggle than I like to let on, and to say I have stubbornness issues would be to put it mildly. However, there is one strategy I have found invaluable in the management of my disease and instead of being a fancy, marketable, secret trick, it’s actually quite boring. I manage my time very carefully.
On days when I have more academic or written work to get through than normal, I cannot manage any other tasks such as housework or going out to socialise. On these days I make sure to avoid any additional tasks where I can, focusing my energy on completing the work, leaving me time to pace myself with regular rest periods throughout the day. On days when I have an average workload I may do something such as go out to a coffee shop, or spend a little longer preparing an evening meal, but again the work becomes the main focus of the day. On days with a light or minimal workload I do what housework I can, and when I’m not doing housework I have time for social and recreational activities, usually involving cake somewhere along the line.
Inevitably schedules change at the last minute and so this system has some flexibility to it. I swap round when I am going to do which activities, or what night I’m going to cook each meal, giving me more or less time as needed depending on the day. However, on the whole this little trick keeps my daily energy expenditure approximately equal, reducing the chances of having a complete energy burnout. Although this system is perhaps a little dull it works well for me and my lifestyle, and allows me to make the most of my time and energy.
Obviously this doesn’t always work. On some days, perhaps because my body thoroughly dislikes me, even the most careful time management fails and I end up flat on my back in bed feeling like I’ve been run over by my own wheelchair while suffering from a bad cold. On these days I can do nothing more than maintain essential bodily functions, and these are the hardest days. As someone who gets bored very easily the days when I can do nothing are the most frustrating, as my mind will insist on remaining active while the rest of me just wants to lie still. These occasions are not as commonplace as they used to be, though.
My system won’t work for everyone; I’m a naturally organised person who likes to plan ahead. I simply utilised the skill that I already had to benefit my adopted lifestyle when I fell ill. There are other little life hacks that other people use to manage their own illnesses, often based on skills they are already well-practised in. They can be tailored to our individual lifestyles and used to help us whatever situation we may find ourselves in. There is no one solve-all trick.
Asking for advice from others who have experience at handling chronic illness for a long time is useful, and certainly things that help one person may become useful to another. However it is essential that we remember the individuality of our cases; the same things won’t work for everyone because everyone’s story is slightly different. Simply embrace the skills you already know and use them to your advantage.
