I've heard of three people this week who have been diagnosed with M.E and spoke to another who has it. It's so sad how common this debilitating condition is. I can't cook them meals, or clean their houses like I would like to do to help them. But what I can do is share what I find has helped me manage this condition and have some sort of life. They are not cures (I believe I can be cured, but what cures one might not work for another, plus it takes time and money - time we've all got, money is a different story)but ways of coping.
1) PACING - I was so annoyed with the NHS for what I thought was 'fobbing me off' when they told me how to pace myself and said that I'd finished the treatment. Is that it? I thought. However, I firmly believe this technique is what has kept me from regressing. The level of the activity that you pace is dependant on your energy levels. The idea is to only do half of what you think you can do, and to make sure you rest afterwards. I know how frustrating it can be when you can't accomplish a task in one sitting anymore, but pacing yourself prevents those awful consequences that come every time you burn all the energy you have.
2) TEST YOUR LIMITS - this sounds Like an oxymoron after the first point, but I do think it's important on some occasions to push yourself a little to see if you have made any improvements. If you don't try you'll never know.
3) KEEP CALM - its not just physical activity that bring on my symptoms, they also worsen when I feel stressed or angry or upset. So, as hard as it can be sometimes I count to ten, take a deep breath and calm myself.
4) EAT HEALTHILY - there are specific restrictive diets that I have found work, but they are pretty hard to stick to. For the purpose of this post, I'm talking about eating your five a day, cutting down on refined foods and most importantly of all - REDUCE YOUR SUGAR intake. The crashes after a sugar fix are not what your chronic fatigued body needs.
5) PROPER REST - I mean putting down your book, switching off your tv and closing your eyes, taking deep breaths and clearing your mind. If you can't switch off, then change your thoughts, remember what it was like to feel well. Remind your brain and your body how it feels to be well. Let yourself rejuvenate and repair.
6) SAY NO AND ACCEPT HELP - everyone I've spoken to who suffers with ME/CFS used to be active, focused, busy people. The kind of people who do the helping, yet now we are the ones that need help. Saying no or accepting help does not come easy to us, but it is so essential. It's also essential to ASK for help too. 4 years on and I'm still learning how to do these things!
This list isn't exhaustive, I'm sure there's things that I've missed, but these are the important ones for me. Feel free to add your comment on what has helped you :)