As someone who became ill with chronic fatigue syndrome at the age of 11 I have spent my entire adolescence and adult life struggling with the condition.
My personality is one that could be classed as predominantly type A and I like to "burn the candle at both ends" as the saying goes. After being diagnosed with ME/CFS and discovering there was no treatment or cure available this led me to ignore my illness and push even harder during my teens. I continued full-time at school, took part in physical education (P.E.) classes, played soccer with my friends after school and went to parties.
For a while this seemed to work as I was very happy which obviously makes you feel better anyway. Inevitably however things began to go down hill in my late teens and my life eventually came to an abrupt halt after a two semesters of university. I was then virtually bedridden for a number of years.
I'm sure many of you have had similar reactions to your illness even if you didn't develop the condition as early as I did. Unfortunately we can't just ignore it and get on with things as normal so we have to adapt.
I spent many years researching my illness and gradually found treatments and lifestyle changes that have helped. Information about these can be found throughout this site. They include diet, nutritional supplements. herbs, medications and the removal of toxins from my life (I subsequently developed multiple chemical sensitivity).
Old habits die hard unfortunately so I am now running this website single-handedly and also studying for a degree in nutritional therapy. It has to be said though that having a purpose in life as these things have given me can be very beneficial. I realise many of you will be unable to undertake such tasks but doing any task for yourself however small or seemingly insignificant can increase your sense of self-worth hugely. The key is getting the balance right. Having a focus and achieving things is great for our self-esteem and therefore our health but only if we don't overdo it and balance it with rest and relaxation.
It has been a real struggle for me to change my ways but I thought I'd share a few tips on how I now cope with my activities and keep stress under control. Most are obvious but are often surprisingly hard to stick to:
1. Don't Take on Too Much - If you are to avoid getting sicker you must know your limits. Once you accept these limits and live within them you can start to enjoy life again (albeit with less going on and at a slower pace than before). Taking on too much only leads to further exhaustion and worsening of symptoms. If you're like me and find it hard to say "no" to people then learning to be more assertive and taking control is essential. Assertiveness training and other techniques can help here. There is nothing wrong with saying "no".
2. Time Management - Following on from knowing your limits is time management. If I have an essay to write I make sure I start work on it way before the deadline because I know that it takes me longer to do things than it would if I were 100% healthy. This way I can makre sure I get it done on time without adding too much stress to my life. Rushing to do things at the last minute is the last thing you want if you suffer from ME/CFS. It only leads to worsening of symptoms and relapses.
3. Sleep - Chronic fatigue syndrome experts agree that disordered sleep (mainly a lack of deep sleep) is a major contributor to symptoms and that making sure patients get the best night's sleep possible is essential to feeling better. How you achieve this doesn't matter too much but things that help include:
Getting to bed as early as possible is also important as much of the repair work and release of important hormones (e.g. growth hormone) occurs efficiently only if you're asleep before midnight. This is often hard for those of us with ME/CFS as changes in adrenal hormones and circadian rhythm make is sleepy in the morning and more awake at night! Hopefully the interventions above should help.
4. Relaxation Techniques - I've found techniques such as deep breathing, self-hypnosis, and visualisation to be very helpful if I feel things are getting on top of me. Just taking a few minutes to breathe deeply can restore calm and allow you to get on with things.
5. Meditation/Prayer - I am not a religious person but am open to the idea that there is more to reality than we know. Whether meditation and prayer work on a spiritual lvel or purely a mental and physical level they have been proven many times to be effective in relieving stress and even reducing the incidence of disease. I practice meditation every morning and find it wakes me up, focuses my mind and gives me the motivation needed to tackle any tasks before me during my day.
6. Socialising - Having some form of social contact is essential to well-being but make sure it is positive. If you have friends who use you or are a drain on your energy reserves it may be best to limit contact with them. Do things that are uplifting (with people that are uplifting!) without over-doing it.
7. Personal Time - A simple one this. Make sure you have time in your day just to drop everything and be alone. People, activity, light, and noise can all be draining so just take a while to have some peace.
8. Hobbies/Entertainment - Another simple one - do things you enjoy. It may be as simple as watching your favourite tv show or listening to music or it may be a hobby that provides enjoyment and also brings with it a sense of accomplishment.
9. Get Out of the House - We ME/CFS sufferers tend to spend a lot of time couped up in our homes. I work at home and study at home and it does get to me and drive my stress levels up! I find that if I get out for 30 minutes or an hour just to drive to the shops or visit a friend nearby, when I come back I am again able to get on with the jobs at hand much more relaxed and be more productive.
10. Exercise - I'm not talking about running a marathon here I'm just talking a short walk around the block, a few lengths of a swimming pool or whatever you can manage. As you as you don't do too much it can only be beneficial for your health and your mood and stress levels. It's about knowing your limits again. I used to love the really physical sports such as soccer, tennis and athletics but know they are currently not a good idea. I am however able to play golf which allows me to get some exercise and enjoy the sense of competition that all sports lovers crave!
Hopefully some of these tips will be helpful to you. As a long-term sufferer of chronic fatigue syndrome all I can say is that knowing your limits and adapting your life around them is key. Yes you will undoubtedly have to make sacrifices but you can still lead a very productive and happy life.
Best of health friends!