Today I’d like some help. The Shropshire ME Group are working with the Clinical Commissioning Group to provide doctors with a simple pack that can be given to patients when they are first diagnosed. I’ve written a rough draft of what I’d like to have been told, including titles of leaflets providing more information. (It is a very rough draft as I haven’t been very well this week!) Before I offer it up for their consideration, it would be great to have some feedback. Would this have been helpful to you? What more would you need to know? Is it too detailed or not detailed enough? I’ll update this info with your feedback for recently diagnosed readers:
ME is a complex illness which medical research hasn’t yet fully deciphered. There are many conflicting opinions about it and so far there is no failsafe diagnostic tool and no cure. Your diagnosis will be based on your collection of symptoms and on having excluded other illness which present with similar symptoms. However researchers are exploring a variety of promising avenues and there is hope that more will be understood about the illness soon.
Although there is no cure yet, appropriate illness management can make a huge difference to wellbeing and for some may even lead to a complete recovery. At the beginning of the illness the key to illness management is getting enough rest. Although rest is still important as the illness progresses the next most important thing about living well with ME is to make sure you live within your energy limits. In fact it’s not only important to keep to the energy that’s readily available to you on any given day, it’s also important to save some energy for your body’s healing mechanisms to use. This can be extremely difficult at first, because those limits can change unpredictably from day to day and are much lower than you have ever known before. One great tip to start using energy more carefully is to always avoid exertion. Aim to only use 50% of your effort on anything that you do. As well as the need to rest and use your limited energy carefully, gentle, exertion free movement is also important.
Although your doctor may not be able to offer you a cure, she/he can help you manage your illness and improve your chances of a recovery. ME often disrupts people’s sleeping habits which can make the rest of your symptoms worse. Your doctor in an important source of help for both sleep disturbance and pain management. She/he may also be able to refer you if you need specific help with other aspects of illness management.
Coping well and improving your chances of recovery can involve learning new skills:
- Learning to identify your energy levels and how they change from day to day/ moment to moment.
- Pacing: Spreading out how you use that energy into small chunks with frequent rest. Pacing rest is also important, that means breaking it up with a couple of minutes of gentle movement from time to time.
- Choosing and balancing what you spend your limited energy on and learning to say no to things that will use too much energy
- Learning about and avoiding the things that can make the illness worse for you e.g. stress; being too hot or cold; light sensitivity; noise sensitivity; chemical sensitivities; food sensitivities, alcohol sensitivity. These can all vary from person to person so it’s important to learn what effects you and how to avoid it.
- Healthy living skills: Relaxation, healthy eating, good sleeping patterns, and appropriate exertion free movement/exercise (within your energy limits) can all add to your chances of improvement. Giving up smoking and limiting caffeine are also likely to help.
- Learning new ways of being happy that involve less energy
Individual leaflets are available with more information to help you learn these skills.
The emotional impact of the illness:
Although there is a great deal you can do to improve your chances of recovery it is usually a slow process. It is very common to have all sorts of difficult feelings when faced with a potentially long-term illness which dramatically limits the way you can live your live. Many people need to grieve the loss of their old life before they can reach an acceptance that life will need to be lived differently for a while. Reaching that acceptance usually allows them to focus on how to make the best of what life has dealt and manage their illness better. It is perfectly normal to feel a great deal of sadness or anger about the losses involved in your illness. However if this goes on for a long time without change, if you feel stuck at all with those emotions, talk to your doctor who might be able to refer you to someone who can help. It is also important to talk to your doctor if you find yourself dealing with a lot of anxiety or feeling depressed.