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If you can somehow teach yourself how to live with ME it will make your life a lot easier and less of a rollercoaster. You need to convince yourself of the fact that you can avoid relapses and that your health is, to some extent, within your control. I have had many relapses in the course of my illness and have only recently (after 7 years!) worked out the right level of activity and rest. Sometimes it just isn't that easy as you will find, for example, that you have to visit a relative, make it to an important appointment or perhaps go to a friend's wedding. There is no way you can or maybe even want to get out of doing it. I have certainly found that, for your own sanity and continued enjoyment of life, if you are well enough to just about manage something enjoyable it can be worth making small sacrifices to achieve what you want. However, the emphasis must be on small and I always try (though not always successfully) to remember the words of a fellow M.E. sufferer who told me that I should be doing 70% of what I think I am capable of doing on a particular day. I think that is good advice. Some of my tips for avoiding relapses, discovered through painful experience, are listed below.

  • Pace yourself - don't get over-excited when you are feeling better. Take a deep breath and be rational (yes, I know it's difficult when you've been feeling truly awful and now you feel like a weight has been lifted off your head). I have ignored this advice at my own peril and frequently come unstuck because I was too stupid to listen to my rational side. Remember how ill you have been feeling and how little you want to feel like that again. See what I mean! It isn't worth the brief thrill of excitement to go to a night club or to try cycling up that steep hill behind your house for the first time in ages. No, steady on and go for a short walk instead or a quiet drink in the pub round the corner. Maybe one day when you are consistently better you will go clubbing or cycling again. Maximise the chances of that happening by being cautious.

  • Avoid alcohol - a really bad one this and difficult to get used to for us regular topers. Believe me it really is important that you become a tee-totaller as alcohol can do strange things to healthy people let alone those of us with something neurologically hay-wired! It is best to treat booze like a drug and if you think of it as such then if you are prepared to take it into your body then you should expect to feel worse and make your M.E. worse. Many authorities on the disease, including us sufferers, recommend giving it up for good!

  • Learn to relax - stress is another big "No-no". I know that it is impossible to completely avoid stress in one's life. Therefore, it seems to me that the important lesson here is to think about ways in which you can deal with stress. I have taken yoga classes and found this very helpful, but you need to practise. There are many different relaxation techniques, but do look into something because one thing that M.E. teaches you is how close the connection is between mind and body. Interestingly I think that it is this loss of belief in the connection between these two intertwined facets of human health that has led to the scepticism about M.E. See my "Links" page for useful contacts and publications.

  • Alter your lifestyle - slow down, accept your limitations and learn to achieve something at a much reduced level of activity. I took up photography and have found this very rewarding. Doing something creative when you are very ill is a great way of regaining some battered self-confidence and reduced self-esteem. One thing that I do heartily recommend is making sure that you have a routine to your day, and this is particularly important if you are not working and are stuck at home. It is so important to establish a time to get up and a time to go to bed (roughly) and a goal to achieve for each day. This way you will feel your fractured self-confidence return as you notch up your small but significant achievements! Don't sleep during the day if you can help it - I find that this often leads to me feeling grotty for the next few days, as if my body clock has been completely scrambled.

  • Stay positive - I know that this is very difficult during the really bad patches and this statement probably sounds rather glib to a lot of you who are reading this, but think of the things that you have achieved no matter how small, and believe in the things that you would like to achieve. It takes a long time to find your own level of capability, but all of us have a brain and if we can use this brain to think so much about why we are ill and what it all means then surely we can also use that same brain to explore something creative and purposeful outside of that illness. Remember not to be ruled by the illness - it is so easy to think that M.E. is controlling you. Well, start un-thinking M.E. and rethinking about your own skills and strengths! A recent study has shown that the placebo effect can give rise to an improvement in 30% of patients in a particular trial. Conversely patients receiving a placebo in drug trials have been known to experience symptoms as diverse as headaches, pharyngitis and even hair-loss in a chemotherapy trial! Don't ignore the power of the mind!

  • Eat better - this is easy. I'm a bit of a sceptic when it comes to the myriad therapies that are supposed to work for M.E. sufferers, and though the jury is still out on whether diet can make a significant difference to the course of M.E. it seems quite logical to me that what we put into our bodies on a daily basis can have a major impact on our health. The theory goes that if you are digesting food with loads of refined sugars and few vitamins and minerals then you are putting unnecessary strain on your body to produce hormones such as adrenaline and cortisol to counteract the effect of giving your body only short bursts of energy. I have altered my diet to include much more complex carbohydrates like rice and potatoes. I've also concentrated on buying more fruit and veg in my weekly shop and I've also eliminated goodies rich in sugar, such as doughnuts, and ditched convenience food for good. As I enjoy cooking and only have to cook for myself this has not been a major upheaval for me, though I can easily see how it might be a lot harder for people with families or those who detest the kitchen! However, you can get real enjoyment out of cooking if you feel strongly that what you eat will have a bearing on how you feel - that mind-body interaction again. See my "Links" page for contacts and useful publications

  • Keep in touch with friends and family - it is so easy to feel isolated when you have M.E. and what you will probably find is that the people that really matter to you will keep in touch, but that more distant friends may quickly forget about your plight. In some ways this is good as you will whittle down your acquaintances to those who actually care for you. Sometimes I wonder whether some of my friends think that I'm so tired that I won't want to talk, so they leave me alone. In circumstances like these, swallow your pride and be the morally superior one - phone them! Make your mates feel guilty for not contacting you. Even if it seems unfair that you have to make all the effort it is better to give in to your friends' apathy than to be sitting alone waiting for the phone to ring, isn't it?

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