I’m the first to admit that I’m not a pacing expert. Over the years, I’ve ignored signals from my body that I need to slow down, until I’ve crashed and then been forced to rest. Then I’ve got better and doubted that I have ME/CFS at all, got back on the treadmill and started the cycle all over again.
Having trawled through some of the extensive online material on ME/CFS and reading about people’s experiences with the illness, it would seem that pacing, knowing your limitations and breaking the boom-bust cycle are key to improvement. Now that’s all very well but putting this into practice is easier said than done. Becoming aware of your ‘energy envelope’, that is, how long you can spend on particular activities without having an exacerbation of symptoms, is important. But what if staying within your energy envelope is going to mean changing or quitting your job, downsizing your property or handing over the responsibility of parenting and housekeeping to others? The good old ME/ CFS self-help advice, ‘minimise the amount of stress in your life’ seems like a bad joke.
So how can we allow ourselves to pace with all this going on? I don’t have all the answers but here are some starting points. If you have anything to add, let me know:
- Be honest with yourself about whether you can work and, if so, how much you can do. If you have an employer, talk to them and negotiate your hours. You may need to get a note from your GP stating the number of hours you can work. Ask to be referred to your Occupational Health department if your work has one. If you don’t work, do make sure you are getting the benefits you are entitled to. This may also involve getting supporting paperwork from your GP.
- Find a GP who believes in ME/CFS. They do exist. If you are not happy with the service from your GP, ask to see another one, or register at a different surgery if possible.
- Accept help. It is difficult – I am 33 years old and my mum does my washing and cooking. I feel embarrassed because I feel I should be doing these things myself. But if you have people around who are willing to help you, let them. It will help you to get better.
- Try mindfulness meditation. It helps you to become more aware of how your body is feeling, in an objective way, which you need to be able to do if you are going to pace successfully. It also helps the mind to slow down and think more clearly, keeping things in perspective.
- Accept that you will be less well off. Live according to your means. Cut out unnecessary costs like expensive phone contracts, high-interest credit card bills etc. If you don’t have the energy to deal with this, get someone you trust to research it for you. lf you’ve having problems with debt, speak to the Citizen’s Advice Bureau.
- Don’t skip meals. You need energy to get better. A ready-meal is better than nothing at all if you’re not well enough to cook. Obviously don’t eat stuff laden with salt, sugar and fat. Also, make sure you drink enough. Keep water by the bed. If you don’t drink enough fluid, this may exacerbate symptoms of postural hypotension (blood pressure dropping on standing), a common symptom in ME/CFS.
- Remember to have a laugh. Even if it means watching You’ve Been Framed or cats who look like Hitler. Dealing with ME/CFS is a drag and can produce feelings of frustration, anger, worry and stress. But you are not just an ‘ME/ CFS patient’; you are a person, who has ME/CFS. It’s hard but try not to let it define you.
Pacing alert: My brain is tired so I am going to stop now. I’ll add some useful links at some stage. Your comments are welcome.