Monday, 21 November 2011

Having a Chronic Illness is a Full Time Job

This has been mentioned a few times on Twitter and Facebook - having a chronic illness is hard work and time-consuming.

Despite the fact that many chronic illnesses cause extreme fatigue, requiring lots of rest/sleep, and the fact that most people don't feel like doing anything at all if they're horribly nauseous, in severe pain or dizzy and faint, there are still lots of things to be done!

My medical appointments can be split into essential and non-essential. The essential ones relate to immediate management - appointments with the Chronic Pain team, the asthma clinic, nutritionist, etc. Physio, OT, psychology and some of the others fall in between essential and non-essential. Non-essential are things like appointments with the geneticist and ob/gyn. I've just got married, so these appointments will be relevant at some point, but not immediately now! My energy levels have to stretch to getting to all the essential appointments, but there are so many of them that it can be hard to get to all of them, and even harder to keep track!

In addition to the medical input from my doctors and therapists, I have to take responsibility for my own care. That involves taking my medications as prescribed, looking after my equipment, doing my physio exercises, keeping a record of symptoms and important observations (e.g. blood glucose).

Of course, there are other things that I can do to improve my physical and psychological well-being. I can practice yoga and meditation, have regular massages and seek help from complementary therapists; I can listen to my guided imagery tracks when I'm in pain, take supplements and ensure that I get the best nutrition that I can, given my dietary restrictions.

But how to keep track?

Crystal from Living with Gastroparesis posted a brilliant picture on Facebook last week, showing the chart that she uses to keep track of her daily medical and holistic routines. I've copied her idea, producing three charts, for regular medications, 'as required' medications, and lifestyle inputs, including physical observations. I plan to keep these in my medical folder (more on the medical folder in another post - I don't want to bore you too much all at once!).

Cat likes to be in photographs

Living well with a chronic illness is like having a full-time job. By approaching like a job, I hope that I can take more responsibility for my own care. I don't mean that my whole life should revolve around my illness (that's just boring!) but by taking it seriously, making self-care a priority and thinking proactively about my care so that I can ask good questions of my doctors, I am making the most of the life that I've been given. This is the way to be as healthy as I can be!

This post was written as part of NHBPM -30 health posts in 30 days:


  1. Hi Jo! I can't tell you how much this post means to me. I've been thinking about this exact same thing lately and may just borrow the chart idea! I don't think people realize just how much it adds to an illness when you are both the patient and a primary care-giver. (Or in my case, sole care giver) I think someone needs to start a grant to provide adults with chronic illness a full time personal assistant to handle all the scheduling, med refills, paperwork, etc! Famous people get to have assistants that do all that for them, why not us! :)
    with love, hugs and prayers -Allie (cb allie1)

  2. Hello Allie and welcome to my blog - it's great to see you here!

    Feel free to borrow the chart idea. I made it in Excel (happy to send you the file, if you think that it might make it easier for you - just drop me an email via CB).

    I've been quite slapdash about my medical care, in a way that I absolutely wouldn't be with my job, so it was quite a revelation to realise that I should be approaching it as a professional!

    A full-time PA is a brilliant idea. You and I could probably employ one each, but happy to jobshare if you'd still want to do some of it yourself!

    Big hugs back to you, and happy Thanksgiving.

    Jo xxx