What does it mean to be tired, really tired? Just because we are sick and tired, doesn’t mean we don’t have goals and ambition. The question isn’t “Should I give up?” but “How do I get it done?” We know that with a chronic illness, fatigue can be a part of the mix, along with pain and reduced function, so how do we adjust and succeed.
READING TIME: 6 MINUTES
You could be really, really tired for a wide variety of reasons (and not just because you stayed up too late last night). It might mean: you aren’t eating well; you’re lacking an important something in your diet (like iron); you are not exercising enough (or too much); some medications you are taking are contributing to your tiredness; you may be stressed; or not sleeping well (or sleeping too much). Feeling tired is complicated to sort out, but important not to dismiss.
People with Chronic illness are often tired. One of the other reasons for feeling tired is that you have an illness which contributes to your tiredness. Do you, or does someone you know, have a chronic illness? A chronic illness isn’t one specific disease type; rather, when compared to an acute illness which is very short, it is a way of describing illnesses that are long lasting (usually more than three months and often for many years). Chronic illness can lead to disability for long periods of time, and can impact an individual’s quality of life. Having one chronic illness is a risk factor for having a second, which is why risk reduction for chronic disease is very important. Prevention activities focus on improving physical and mental health and well-being. Examples of chronic illness are: dementia, diabetes mellitus, high blood pressure, cardiovascular disease, obesity, hypertension, and tobacco use, to name just a few. Fatigue is a common symptom associated with chronic illness.
Fatigue, or being really, really tired, is very challenging. Fatigue is hard to describe and fairly personal (and therefore hard to measure) but this doesn’t detract from how important it is to recognise and manage. Fatigue can be physical, emotional and cognitive (how we are managing to think and make decisions). People who are fatigued find it difficult to manage the load (physical, emotional and/or cognitive) of activities in a regular day. If they do manage a regular day, the burden of managing is very draining and extended recovery time is often needed.
While not a lot is known, there are things that can be done about feeling very tired. Research that has been completed on fatigue, particularly for people with chronic illness, has identified the importance of:
Detecting fatigue symptoms
What to do while you are seeking help. People often give advice telling you to not do as much, if they see you struggling with being tired; which generally infers putting aside your goals and dreams. Your goals, dreams and ambitions are fantastic. People often assume that because you are frequently tired and/or have a chronic illness, that you shouldn’t try so hard or aim so high. It’s ok to have an amazing vision. You can still make it happen even while sorting out the ‘I’m so tired’ problems. This blog is focused on how to pursue your dreams while you are sorting out your health issues (however long that takes).
Identifying your core values. There will be things you can and can’t do. You need to think carefully about what these things are going to be, and choose strategically. If you let other people choose, or if you choose randomly, you will become increasingly frustrated by your situation.
What are your core values? You have core values that are important to you. These are different for everyone. Being able to maintain your core values throughout this period of your life will help to bring you joy and satisfaction. Core values are deeply held and cherished and are often hard to give up ideals.
You need to identify the difference between a core value and the execution of a core value. Which core values are most important? If some need to be traded off against another one for the time being that is ok.
Create a plan to fulfill your priority core values. Not living up to our core values as a result of our fatigue can create a sense of disharmony and sadness in our life. Unless you plan and choose a way to resolve this lack of alignment in the way you are living you will live with unresolved internal stress.
Identify your dreams and visions. Are they connected to your core values? Choose to spend your day doing things which are a priority, and don’t waste significant energy on things that aren’t connected to your core values. These other things whenever possible should be: outsourced; redirected; ignored. Put off till tomorrow anything that is not a priority.
Establish a routine that minimises time on things that aren’t significant and leave your energy for things that bring you joy and peace. It is possible that we can make adjustments to accommodate a routine that will work in harmony with your current capacities.
Three examples from my life that are minor or major by way of illustration. Learning by reading is a core value that I haven’t done as much of in recent years because I struggle to hold the book up and stay awake later at night. I have resisted eBooks and audio books as I love holding real books, owning them and reading them. I was becoming really sad because I was reading so little, and reading is a part of who I am. A few months ago I decided that I valued reading more than my need to own or hold the book. So I bought an audio book and listened; I’ve been listening regularly ever since. I’m enjoying it, as a completely different experience to reading the book for myself – not controlling the pace is very weird or the intonation, but it is good, and I’m zooming through books. My core value was learning, absorbing, and experience books; I could adjust the way in which I made that happen to suit my current limitations. Secondly, I am hopeless at mornings. As a chronic migraine warrior this is made even worse with significant medication – mornings are sluggish particularly if acute migraine medication was taken the day before. My research centre has moved the majority of meetings that I attend to mid-morning or later to accommodate my ‘I am not good at mornings’, for which I am greatly appreciative. I am always looking for ways to start earlier - but this is not a regular thing yet. It is a goal I’m working on. Most days I’m a morning zombie. But participating as an academic is really important to me (contributing to my community) so I get up each day and go to work because I love it. Finally, I wanted to cook dinners for my family that were interesting, but I didn’t want to choose the meals or go shopping (too tiring and it was just all too hard for someone not very good at it). So I ordered meal kits to be delivered to the house. In this way I could prepare the meal for my family (my core value), with none of the prep beforehand.
What this means for you. Many people with chronic illness and/or fatigue want support to be empowered in as much self-management as possible. This may include treatment options, but it also means personal systems. What can be done to manage choices to help get things done?
Firstly, acknowledge that being tired is real. You are not lazy. Do you have fatigue? How fatigued are you? Take time to go and have a chat to your health care professional if you feel that fatigue is an issue for you.
These steps will be helpful after you have identified your core values.
Think about restructuring priorities according to your energy levels and minimising stress (but don’t expect to eliminate it completely).
It is important to have a reasonable balance between rest and activity (excessive rest is not helpful).
Identify your dreams and vision, and work out what you can achieve in your current situation.
I am filled with admiration for all of the people who struggle with illness and/or fatigue and yet they manage so much and contribute to their families and the community in magnificent ways. I am inspired by their journeys. Remember, it may take you longer to get where you’re going, but that is ok, as long as you are moving forward with your plan. In the comments below let me know what things you have adjusted to help manage your fatigue and to achieve your goals and dreams.