My self help manuscript on managing a life filled with unrelenting fatigue is with my editor! So Exciting!! Before hitting the send button, I spent some time tidying up the chapter on why and how to use a fatigue diary. I think it’s one of the most helpful things someone with a chronic illness or fatigue can do.
It’s hard to believe that it’s been seven years since an auto-immune illness left me with chronic pain and fatigue that changed my life forever. I’ve learned many things in these years. Two of the most important things I can do to help myself, are:
- clearly articulate what and how I’m feeling to health professionals as well as friends and family,
- pre-prepare and be organised when I attend appointments with medical professionals.
It’s not easy to explain what fatigue feels like. But, learning how to describe fatigue in language that others can relate to is one of the keys to successfully managing fatigue. Everyone knows what it’s like to be tired, and most people assume that how they cure their own tiredness will also work for you.
But fatigue isn’t tiredness. It isn’t relieved by sleep.
Trying to explain what your fatigue feels like – to your colleagues, your boss, your friends and family, even your doctor – can be challenging. But successfully explaining how you feel, and how fatigue affects your life, will make a big difference in how successfully you can live with fatigue.
The Benefits Of A Fatigue Diary
I’d never heard of a fatigue diary, and to be honest, I was reluctant when my neurologist suggested keeping a pain and fatigue diary. I didn’t want to focus on either symptom – I was too busy trying to ignore them and get on with life. Of course, that tactic didn’t work very well, so I took the neurologists advice and kept a pain and fatigue diary for a couple of weeks. It helped to highlight key patterns and triggers for me, especially with what activities caused more pain than others. It very quickly became obvious that increasing pain led to increasing fatigue and vice versa.
Keeping a diary for a week or so helped me to consolidate, in plain language, what my symptoms felt like. And it helped me to identify and articulate the impacts of fatigue on my life.
Knowledge is power when it comes to dealing with chronic illness and fatigue. You don’t need to keep the diary forever – or you could risk getting bogged down in focusing on the symptoms themselves. Keep the diary just long enough to get a better understanding of what’s going on with you.
My Tips For Creating A Fatigue Diary
Complete the fatigue diary every day for at least a week, and complete it on good days as well as bad days. You can use a purchased diary – you will need one that has a day to a page, preferably with time slots, so that you can fit in all the information that needs to be recorded. Or you can use an online diary, or create your own spreadsheet if you are nifty with spreadsheet applications.
I recommend starting with a note of how well you slept and how you felt when you woke up.
Then list your activities through the day, with enough detail to make the diary useful. For example, ‘shopping’ could be: short trip to a local shop for a few items, or longer outing to a big shopping mall with lots of walking and bags to carry.
Score how fatigued you feel when, or immediately after, you are doing the activity.
There isn’t one agreed and readily available scoring chart for fatigue, but there are a number available on the internet. When I first became ill, I found one (though I can’t remember where) that with a little modification worked perfectly for me.
Change this to reflect what you do, and make it meaningful to show your fatigue ups and downs.
- I feel great, let’s go out for lunch!
- I’ve written a blog post and done some light gardening today as well as 15mins of tai chi
- I’ve achieved my steps and exercise goal for today, and have a little energy spare
- I’ve done a quick shop for a few items but can’t go out with friends
- I can get around the house, but can’t go out
- I can read or work on the laptop while lying down
- I can play a game on my phone, and hold a conversation at the same time
- I’m moving, but can’t do much more than watch TV
- I can barely move, but can still talk though I’m slurring my words and forgetting sentences half way through them.
- I can’t move, can’t smile, can’t talk
I also note what kind of fatigue I’m experiencing. For example fatigue can be:
- Cognitive functioning,
What To Use The Fatigue Diary For
In a nutshell: three things – managing yourself; explaining to others; preparing for appointments with health professionals.
- Managing yourself.
- Before you can even think about managing your fatigue, you need to work out whether there is anything that triggers it, what things make it worse, what things make it better, if there are any.
- A fatigue diary can help you to see patterns in your fatigue. For example, you may notice your fatigue is worse after large meals or in the afternoon, but better after an hour’s rest. You might find that certain activities make you more tired than others.
- Explaining to others.
- We usually do our best to disguise our fatigue, so it’s no surprise that our fatigue is not always obvious to others. It’s an ‘invisible’ symptom, and without understanding what it’s like, people may tell us to ‘make more effort’ or ‘stop being lazy’. Fatigue is difficult for us to describe, and hard for other people to understand. This can be distressing, especially when we are trying our hardest, despite unrelenting exhaustion.
- If you usually stumble over your words when trying to explain your fatigue, study the fatigue diary. Take a few moments on a good day, to write down how fatigue makes you feel. Use words that are meaningful for you. You might need to go through a few analogies until you find one that your friends and colleagues can relate to.
- Prepare for appointments.
- Being prepared means being able to explain what my symptoms feel like and sharing information with the health professional so they can assess what’s happening to me and provide full answers to my questions.
We’ve probably all spent days or weeks functioning on autopilot thanks to burning the candle at both ends. Modern life is hectic and sleep is a luxury, tiredness affects everyone. But having fatigue is very different to feeling a bit drained. Tiredness is usually relieved by a few extra hours of sleep, a holiday, even a change of pace. But fatigue is a daily lack of energy; an extreme weariness that no amount of sleep eases. It’s bone wearying, debilitating and sometimes disabling.
If you are struggling with fatigue and haven’t already kept a fatigue diary, then give it a try. It can’t hurt, and could help you to manage yourself, explain how you feel to others, and better prepare for appointments with health professionals.
I don’t have a cover design yet … but will do soon 🙂
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