How it affects your life

Pain or other unpleasant sensations can affect important activities in your life. These might include seeing friends, eating foods you enjoy, working, doing hobbies, or exercising.

This can add to the distress of living with a painful health condition. People can also:

• feeI stressed
• have problems sleeping
• feel low in mood
• feel extremely tired (fatigue)
• find it hard to talk about their condition and feelings

Some medicines can help, but there is not always a way to get rid of the sensations completely.

It’s useful to focus on ways you can live with your condition, and understand how you can manage the impact that it has on you.

• It is important to remember that you should still get medical treatment when you need it.
• You should not stop taking medicine that is working well for you.

Changes to your normal activities

Pain and unpleasant sensations can make it difficult to continue doing the activities that are important to you. However, it’s important that you do not put your life ‘on hold’ waiting for the symptoms to get better.

Meeting with family and friends, enjoying hobbies or exercising can help to shift the focus elsewhere. This is important when the symptoms might be long-term.

Doing these things will lift your mood, calm you, soothe you and restore a sense of wellbeing. 

This also applies for food and drink. If you really want to eat or drink something that you know might make your mouth feel a little sore afterwards (for example, spicy foods or orange juice), you should have it.

If you completely avoid food and drink that trigger the soreness, it could make you more sensitive to those things.

So, try to keep doing things as you usually would. Try to be kind to yourself, and seek out things that you enjoy doing.

Stress

Some people find that their mouth, jaw or face condition gets worse when they feel stressed.

Take control and set goals

These are 3 things you can try to help you feel more able to cope with stress:

1. Think about the different sources of stress in your life. These might be big life events, or a build-up of many smaller things. Be kind to yourself as you recognise what you are dealing with.
2. Think about the areas you can have some control over, and do not focus on the ones that are outside of your control.
3. Pick 1 area that you can do something about, and make a list of everything you could do about it. Pick 1 action you would like to try first and write down how you will do this.

As you do this, remember to set realistic goals, and break down tasks that are overwhelming into smaller steps.

Choose 1 area to start with, do not try and change everything at once.

Practice breathing exercises

If you’re getting overwhelmed and your thoughts are racing in different directions, pay attention to your breathing.

Notice your breath going in through your nose or mouth, filling your lungs, and coming out again. Focusing on your breath can bring you back to the present moment, even at times of stress.

Notice your thoughts

Notice the thoughts that show up when you’re feeling stressed. Let them come and go without reacting to them.

Notice your response to stress

Notice how you respond at times of stress. For example:

• your eating patterns
• your alcohol use
• your interactions with others
• you avoid difficult situations

Sometimes, our responses to stress can make us feel worse in the long term.

You can take steps to change these responses, even if you cannot change the source of stress itself. For example, tackling, in small steps, a pile of unopened letters.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust  have a range of self-help information, including topics such as stress. 

Low mood and depression

We know that depression is more common in people with physical health conditions.

Symptoms include loss of interest or enjoyment in activities, loss of motivation, and feeling numb.

Feeling tired and having appetite changes can overlap with symptoms of a physical health condition, making depression harder to diagnose.

Actions you can take

• Plan activities that are important to you, or that give you a sense of achievement. Deciding on a time and place that you will do activities makes it much more likely you will do them.
• Break activities down into manageable steps so they feel less overwhelming.
• Remember that motivation follows action. Do not wait until you feel like doing something, you might be waiting a long time.
• Reward yourself when you have completed a task.
• Notice what actions you take in response to low mood that might not be helpful in the long term. For example, stopping seeing friends or drinking alcohol might feel helpful in the short term, but can have long-term effects.
• Take care of yourself by eating a well-balanced diet and doing a manageable amount of exercise regularly. For example, go for a short walk each day.

Negative thoughts

Notice how your thoughts can feed into the problem. For example, listening to thoughts such as ‘there is no point going’ might stop you going out. This can make you isolated and feel worse over time.

Can you recognise these thoughts, and let them come and go without reacting?

The NHS website has information on how to deal with depression.

Read the NHS information about managing suicidal thoughts, and who you can contact for support.

Sleep problems

Poor sleep is common in people with physical health conditions. Sleeping well can make a big difference to how you feel.

Read the NHS information about how you can improve your sleep.

imparts has information about sleep.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust have a range of self-help information on topics such as anxiety or sleeping problems.

Extreme tiredness (fatigue)

Fatigue is common in some health conditions, and can also be a side effect of some medicines.

Emotional factors can make fatigue worse.

Planning your activities

A lot of people are tempted to do more on good days where they have more energy. However, this can make you feel more fatigued and do less the next day.

This is called a boom and bust cycle. Over time, there are fewer good days and more bad days.

This is why pacing your activities is really important. Keep doing a regular amount, by basing your activities on a plan, and not how you feel. Planning means it is you who decides what you do, not the fatigue.

• Choose the most important things that need to be done, and decide what can wait. This means accepting that not everything will get done at once, and some things will take longer.
• Spread out plans and activities that you find particularly tiring.
• Think about activities that you can do sitting down when you feel tired.
• Break activities down into small steps and set goals. What could you start now, without anything (including fatigue) needing to change?
• Notice your thoughts and emotions, and how you respond to them. For example, thoughts such as ‘I cannot leave this unfinished’ or ‘there is no point starting if I cannot do as much as I used to’. Try to recognise these thoughts, and let them come and go.
• Plan times to rest. Limit the length of these, as too much rest can make fatigue worse in the long term. This is because you lose fitness and get tired more easily.
• Reward yourself, especially when you stick to a plan on a bad day.

Planning will often mean doing a bit less than you could on good days, and a bit more than you want to on bad days.

However, over time, you should find that your activity levels increase.