Trying to describe fatigue to someone who has never experienced it, is extremely difficult. Fatigue isn’t just being tired or experiencing a loss of energy; it is an overwhelming, all-consuming feeling of exhaustion, that words cannot truly explain. Your body feels like it weighs a ton and you have to drag it around with you all the time, it can, quite literally be a fight to place one foot in front of the other or to string a sentence together. Your energy levels are constantly running low, regardless of how much sleep you get. Tasks that you once took for granted, like brushing your hair, now seem like a challenge. Most people get up in the morning and don’t have to worry about running out of energy before it hits lunchtime, unfortunately for those with fatigue, that is not the case. It is exhausting having your body fight itself in this way.
A good way of thinking about fatigue is by the use of The Spoon Theory, which was designed by Christine Miserandino. The Spoon Theory is a metaphor for the energy levels of a fatigued person. A spoon represents a unit of energy. We start the day with a set number of spoons. Healthy people have unlimited energy and therefore have an unlimited number of spoons, compared to those of us with a Chronic Illness. Someone with fatigue may only start the day with 12 spoons. The allocated spoon numbers are not set and varies depending upon our energy levels on a specific day; this is influenced by how well we slept, how our other symptoms are doing and how busy we were the day before. For every activity that we complete, we give away at least one spoon. The more energy involved in completing a task, the more spoons that will be used. Every activity we complete in a typical day include; getting out of bed, going for a shower, brushing your teeth, getting dressed, brushing drying your hair, putting makeup on, making breakfast and eating breakfast uses our spoon allowance. When starting the day only having a limited number of spoons, it is inevitable that you will run out of spoons. When you have no spoons left this results in you being exhausted, both mentally and physically and unable to complete anymore tasks. When this happens, you have the option of stopping and resting or borrowing spoons from tomorrow. When borrowing spoons from tomorrow, you may create a cycle of doing too much, which in turn could lead to other health complications in the future. As well as a way of monitoring your energy levels, The Spoon Theory, is also a good way to help healthy people understand why, at times, we have to say no to activities, or cancel plans. Those who suffer with fatigue have to decide, extremely carefully, how to use their allocated energy/spoon allowance, as we never know when it will run out. It is worth asking yourself; is this activity worth sacrificing my energy (or a spoon) for, before carrying out any activities?
Fatigue is a symptom of many chronic illnesses; including Lupus and can disrupt many aspects of your daily life. It is reported that at least 80% of people with a chronic illness, struggle with fatigue. Like the Chronic Illness journey, the fatigue journey is different for everyone but those who struggle with fatigue, fear being viewed as lazy or unreliable due to them being unable to carry out simple tasks or participate in social events. The reason for fatigue is unknown, which means finding a solution for it difficult. Causes have been suggested to include, anaemia, depression, trying to manage your pain levels, a Vitamin D deficiency, your overlapping diseases, going through a flare, stress or even the medication you take to control your other symptoms.
Fatigue can affect you both mentally and physically. When fatigued you may find your cognitive function impaired. You may feel as though your brain isn’t functioning properly, you feel constantly confused and disorientated and you have difficulty concentrating on something, regardless of how simple it is. You can’t remember simple words or people’s names. It is so frustrating. Other symptoms include chronic tiredness, muscle and joint pain, you may find yourself getting ill on a regular basis and having constant headaches.
It is important to find a way of balancing fatigue with your other symptoms and living your life. Fatigue, at its worst, may lead to depression, anxiety or a feeling of helplessness. It is therefore important to do what you can to combat it. Although there is no way to recover from fatigue, there are several, possible solutions that may alleviate your fatigue to a more manageable level. These strategies include:
· Being in tune with what your body is telling you. You need to learn what your limits are and accept them. Your body knows what is best for you and if it is telling you to stop and rest, then do it. It is crucial that you avoid pushing yourself too far, as this may result in further health issues.
· Organise your day in accordance with your energy levels and be adaptable to your situation. If you can do something great, if not don’t beat yourself up over it and only do what must be done that day.
· Regular exercise can help with fatigue due to increasing your energy levels. As someone with a chronic illness, the thought of exercise is probably the furthest thing from your mind but low impact exercise, such as swimming, walking or cycling, may be beneficial to you. Exercise at a time when you feel more energetic and start slow. Carrying out a little exercise may only add on an additional hour of non-fatigued time but at least it is something.
· Ask for support from friends, family and work. Let them know how fatigue is impacting you and how they can help you with it. Doing this does not mean you are weak.
· It is important that you take multiple rest periods throughout the day and if you can, take this time outside to get some fresh air.
· The time that you take your medication can impact, both sleep and fatigue levels. Something I only found out recently was, that corticosteroids should only be taken in the morning, as they can cause sleep disturbance. It may be a good idea to check all your medications to see if they have a suggested time to be taken.
· Good sleep habits are vital for those with a chronic illness. I have found it is important to take some time to relax before bed. This could be a nice, warm bath or reading a book. It is important to avoid the use of technology before bed. Also, avoid any form of caffeine after dinnertime, as this may upset your routine. If I don’t sleep well, the next day is hit or miss. My level of fatigue and therefore my ability to cope with daily demands is significantly compromised.
· I know, at times, it is easier said than done, but it is important that you avoid stress, as it is a major trigger of fatigue.
· It may be beneficial for you to track your fatigue (and possibly all of your symptoms) to be able to identify:
- What is it that makes your fatigue worse?
- What is it that helps you to feel less fatigued?
By tracking this, it may help to put together a bigger picture of what is going on with your health and allow for you to deal with it appropriately.
As I always say, staying positive helps, otherwise your fatigue and chronic illness can become overwhelming and consume you. To enjoy life, you need to take control, wherever you can. Remember you are not lazy; you are doing want you need to do to get through the day. It is important for you to accept fatigue for what it is; part of your condition, that unfortunately, will always be there in some shape or form. It takes a lot of strength and determination to work and manage the symptoms of fatigue, along with your chronic illness and day to day life, so be proud of yourself for what you do manage to complete on a daily basis and don’t get hung up on what you can’t.
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