Managing Your Condition
Contents
Where to Access Support
- If you are experiencing chronic pain and fatigue you can discuss the support and adjustments available to you with an appropriate manager. Find out more about support for disabled staff.
- Also consider the support available from HR, Occupational Health, Trade Unions and co-workers.
- Consider applying for Access to Work, a government funded employment scheme that provides financial support to ensure disabled people can start or stay in work.
- Consider applying for the University staff mentor scheme
- Consider joining the Chronic Pain and Fatigue Staff Network
- Contact your GP for health support.
- The University Wellbeing Team and University Staff Counselling and Psychological Support service provide advice, information and counselling which may be helpful. Further information is also available from the Equality and Inclusion Unit about local and national mental health support.
- Charities for your specific condition can be really useful places for information and resources such as the M.E. Association and Chronic Illness Inclusion.
- Patient support groups can provide advice and insights from those with the same or similar experiences. Search for online groups via social media using hashtags such as #spoonie, #chronicillness, #invisibleillness, #pain, #fatigue.
The information provided here is general guidance. Individuals are always advised to seek personalised medical advice directly from a medical professional before taking steps to manage their symptoms or making any lifestyle changes.
Managing Symptoms
Measures that may help manage your symptoms, and reduce their impact on your life, might include:
- Medication for individual symptoms
- Support from a specialist service
- Light exercise
- Resting and sleep management
- Diet and nutrition
- Pacing
- Aids and equipment
- Relaxation and/or meditation
- Delegation and/or asking for help
- Having a setback plan.
Lifestyle changes
Changes that work well for some will not necessarily work for others but making some changes to your lifestyle may help to manage your condition:
- Light exercise such as a short walk, yoga, Pilates, tai chi, swimming, or other forms of low-impact, gentle movement can ease pain and reduce fatigue. For those with limited mobility, sitting in the fresh air for short periods or doing seated exercises can be beneficial too. Do what feels manageable and introduce any changes gradually.
- Making time for rest periods, including naps during the day, and establishing a good bedtime regime can help to manage chronic pain and fatigue symptoms. Relaxing in the bath or resting on a comfortable sofa or bed can help you to rest for short periods. A bedtime regime could include not having caffeine after 4pm, not using screens (tablets, mobile phones etc.) immediately before bed, reading before you turn the lights off, or guided meditation.
- Nutrition and dietary changes may help but avoid making extreme changes or omitting particular foods without first discussing with your doctor or a qualified dietitian.
Pacing
- Pacing is not a treatment but a type of self-management for the impact of chronic pain and fatigue.
- It involves balancing activity and rest to keep activity levels within sensible limits. Its aim is to avoid overly aggravating any symptoms which could prolong the recovery phase after the increased activity.
- Pacing could be used for physical, mental or emotional activity. For some individuals, even minimal activity can have a considerable impact on energy and symptoms, particular those with severe symptoms.
- Making the necessary changes to achieve successful pacing can be difficult. It may take time and patience to deviate from your previous routine, habits, and ways of thinking.
- If you think you may be approaching a setback, take some time to review why this is happening. It may be helpful to keep a log of the activities that you were involved with before the setback (or anticipated setback). If you are having them regularly, it may be that you are attempting to do too much when you are experiencing fewer symptoms.
- Try to learn from your experiences, and develop a personal strategy for preventing setbacks.
Practice self-care
- Rest when you need to rest. Be realistic about what you can and cannot do.
- Create a pain management plan. This might include medications (in consultation with your doctor) and alternatives such as heated/chilled pads, a warm/hot bath, body pillows, massage/acupuncture (if they work for you and you are able to access them).
- Remember to include self-nurturing activities that bring you pleasure. Having a chronic pain and fatigue condition does not mean you do not deserve to treat yourself well.
- Regularly do those simple things that allow moments of calm and comfort, such as having a cup of tea, reading a book, eating a piece of cake, using a face mask, listening to music, playing the guitar, wearing noise-cancelling headphones, lying down in a dark room, cooking, or playing your favourite video game.