Tiredness / fatigue
What is it and why does it happen?
5-20% of the general population suffer from such persistent and troublesome fatigue – according to reports in the British Medical Journal ( https://www.bmj.com/content/325/7362/480 , but in a survey conducted by Action on Gilbert’s Syndrome, over 80% of people said they had problems with fatigue.
Fatigue is more than just feeling a bit tired. It’s overwhelming. You find daily life difficult, and fatigue can include the brain fog that so many of us with Gilbert’s Syndrome recognise. Heavy limbs and sleepiness can also play a part. It isn’t relieved by a good night’s sleep.
For people experiencing fatigue it makes a big difference to your quality of life. For medical professionals it is perhaps of less interest as it is common to so many conditions, and so gives little information about what specifically it relates to.
There are many reasons why anyone might feel tired – working patterns; having children and other caring responsibilities which don’t keep regular hours; hormones and the menopause; vitamin deficiencies or a poor diet, and other aspects of your health and wellbeing or chronic conditions. These can build up into fatigue.
For people with Gilbert’s Syndrome there may be additional reasons – your reduced liver function can make you feel under the weather and groggy.
If you don’t eat well this can have more impact. For example, eating a diet high in refined carbohydrates such as cakes or white bread can result in highs and lows of blood sugar, energy and fatigue. Balancing your intake of sugars, which means eating complex carbohydrates (such as plants and wholegrains), gives your UGT1A1 enzyme a consistent energy store to do its work.
Also linked to tiredness are the stomach problems associated with Gilbert’s Syndrome. As food takes longer to leave your stomach you can feel sluggish and your body can feel slow and tired. This is a symptom that has also been linked to Chronic Fatigue Syndrome ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC544348/ ).
Anxiety – one of the common symptoms of Gilbert’s Syndrome, has a side effect of lethargy. https://www.anxietycentre.com/anxiety-disorders/symptoms/low-energy-anxiety/
Feeling generally unwell is also exhausting.
Managing your fatigue
In the first place, a strategy to manage your fatigue is vital. It will help you deal with it day to day, until you can put in place the pillars that will help you build resilience and your energy can improve. This video is a simple explanation of how to pace and prioritise. With practice you will get a sense of your energy budget and work with it to manage what you can do. With a variable condition like Gilbert’s Syndrome, you might get periods of fatigue and feel fine other times. ‘Pacing up’ might not be relevant for you, but if you have longer term tiredness it could help you to increase your range of activity over time.
Most importantly – give yourself permission to feel tired! It’s OK! Getting frustrated, angry or upset about the limitations of your energy are normal, but aren’t a good use of your emotional energy. Yes, it is frustrating and you can feel really down. It’s ok to accept that you are affected that way. Then it’s time to be kind to yourself and allow those feelings to move through you as you build ways to cope.
Gaining Energy and Resilience
I place the foundations of energy and resilience on four pillars. More in depth work on these is the subject of a separate course on fatigue. Working one to one with a health coach can develop a more personalised programme that suits you. But to start off, in brief – these pillars are diet, exercise, sleep and mental resilience. You can make a great start by following the guidance below.
Diet
The best fuel for your body is based on lots of plants, especially broccoli, kale, seeds and nuts and whole grains.
a diet that is predominantly plant-based and low in salt, saturated fats and added sugars
is recommended as part of a healthy lifestyle,’ World Health Organisation
Reducing refined carbohydrates (these are things that have been processed or ‘refined’ such as white bread and pasta, cakes, sweets, sugary soda, sugar, cooking sauces and pre-prepared packaged foods) can be important for people with Gilbert’s Syndrome. This is because the enzyme we are deficient in needs a steady supply of glucose to work best.
Refined sugar creates high and low levels, which result in a crash in energy. Plant foods high in fibre create a steady blood sugar for your body to use over a longer period of time. They also mean you will feel less hungry and less likely to seek out quick energy fixes through sugary and fatty snacks.
In my opinion and experience, extreme diets can trigger Gilbert’s Syndrome symptoms. Healthy eating on a daily basis is key. Fasting is a trigger for many people who may become jaundiced after missing meals. It is one of the ways Gilbert’s Syndrome is diagnosed, as fasting will tend to raise bilirubin levels, as your enzyme doesn’t have what it needs to work well.
Many people are also deficient in common vitamins such as vitamin D, which can have a significant impact on energy levels. A balanced diet and supplementation in consultation with a health professional or nutrition coach could transform your energy.
For a free recipe booklet with recipes designed to support the health and wellbeing of people with Gilbert’s Syndrome click here. Recipe’s for life with Gilbert’s Syndrome
Exercise
Regular exercise is good for mind and body. However, intense vigorous exercise is not necessarily good for people with Gilbert’s Syndrome as it can trigger our symptoms.
Daily medium intensity exercise such as walking is a great place to start. Aim for a minimum of 30 minutes a day. If you can include strength training such as lifting some weights or squats and push ups, then you will benefit further. Don’t overdo it and ensure you warm up and down gently. An exercise programme can be developed with goals that suit you, alongside a health professional. There are also many online resources that can show how to begin exercising at every level.
Sleep
Getting enough sleep has many benefits for wellbeing, including immunity, alertness, strength, mental health etc. Planning for eight hours a day is optimum. If you can’t achieve this, then a nap during the day is a way to supplement your sleep debt if necessary.
Sleep is not something you can do without. It’s vital to all bodily functions for now and for your future health and wellbeing. Sleep is another topic I will cover in detail in a separate course on fatigue.
For simple tips on getting good sleep Matt Walker has a simple video below. If you want to hear more in depth about sleep disorders and mechanisms, you can see more of his videos on YouTube and get his book ‘Why We Sleep’
Mental Health
Feeling anxious and down can be a symptom of Gilbert’s Syndrome, and any long term health condition. You can feel frustrated and angry, upset and sad because you don’t feel well. Adjusting to symptoms is a process of building resilience.
For good mental health and resilience, there are many tools to help. You can find more resources at the Mental Health Foundation, here https://www.mentalhealth.org.uk/explore-mental-health/a-z-topics/long-term-physical-conditions-and-mental-health From antidepressants to meditation, and other tactics for wellbeing, there are so many opportunities to help you feel better.
Your brain can be adapted away from negative thinking. Cognitive Behavioural Therapy and mindfulness meditation are two ways to build positive thinking and calmness over time.
Here’s a simple explanation of Cognitive Behavioural Therapy (CBT):
Here is a simple explanation of mindfulness and some ways to practice it. You can find lots more videos on this and there are many more resources on mindfulness available as books, podcasts, apps, downloads, online courses and face to face training and meetings.
I’ve put together a free meditation, that’s just 8 minutes, for you here:
If you are adapting your lifestyle to include many of the tips and tactics mentioned here, then you may already be feeling better and more able to balance your mental health and be more mentally resilient.
This article on how to hack your liver to improve your mental health has many resources for people with Gilbert’s Syndrome.
My video story
My video story text
I have spent many years trying to find the secret to gaining more energy. Some of the things I tried actually made me much more tired! I tried exercising more to get fitter. This was a big mistake as I’d go jogging and get knocked out by a flare up in symptoms. So I moved to walking instead – which has been transformational. I tried to eat little and often, but was just hungry all the time and it was really inconvenient. Instead I now just eat as many vegetables, healthy fats and protein as I want and I’ve much more energy. I found supplements such as rhodiola and ashwaghanda which are both purported to reduce anxiety and stress and support endurance.
I’ve had occasional deficiencies over the years, iron, and vitamin D, which have caused me excessive tiredness. Blood tests identified them and I was able to sort them out with the support of my Dr.
The important message I want to give you here is that there are basic principles of good nutrition and living, but you need to find what works for you. Plus your body’s needs can change depending on your age, lifestyle and so on.
A health coach can help you keep tabs on your energy and support you in finding what works for you. I’ve spent years trying lots of different things, and trying not to get caught up in the latest fads. Finally, I’ve studied a health and nutrition diploma to support my own journey and that of others.