5 Things I live By With ME/CFS

Gosh, it’s been a long time since I sat down to do one of these list-type blog posts. Also, I need to add that I’m so sorry there wasn’t a blog post last week, something had to give and the blog lost the short straw. I just was running on low and I needed to go to the hospital twice for appointments. So now that I have rambled a good paragraph I shall tell you five things you should be doing if you have a chronic illness. 


  1. Stick To a Schedule. I know it can be so tempting to sleep more if you had a night of no sleep or to wait an hour to eat but your body might not crash so much if you get up at the same time and go to bed at the same time every day. You might want to eat at a rough time to level out your energy. Some days no matter how much I want to I don’t make it but they tend to be the worst of the worst type days.
  2. Say no if you need to. Sounds simple, doesn’t it? But say no when you don’t think you can travel to Great Aunt Bessie’s birthday party. Say no if you can’t meet friends as arranged. Say no if you can’t function. You have to look after you first and foremost. I know there will be times when you push to be there and that’s ok but make those they exceptional circumstances rather than the norm. 
  3. Know how much you can do per week and stick to it. You can probably find packing worksheets that use colours to rate energy activities from that you can find a baseline of how much you can do without killing yourself each week or day. Stick to how much is achievable don’t squeeze more in because you feel like you want to do more or that activity that you love. It can be tough to do but it might help you level your life and your chronic illness.
  4. You need to not care how people perceive your actions. This is such a tough one but try not to worry what people think of you, your choices and the way you live your life. You can’t live your life to make others happy. Like everything in life, there are exceptions to this one. Sometimes you do care and that’s ok. But if a person giving you a dark look for using a disabled loo or parking space stops you going out then maybe you need to try and produce the titanium armour needed sometimes in the world. Know that you are doing the right thing for you and your nearest and dearest know that too. 
  5. Ask for help when needed. This is so hard to do but ask for help when you need it. I know we all want to be as independent as possible but to ask for help little and often rather than crashing and needing everything is normally better. Of course, crashing can’t be avoided sometimes but asking for help might make your energy go a little further. 

So there you have my common sense mostly tips for co-living with a chronic illness. As always I need to add these are just things that have helped me and if you can’t stick to this then that just means your experience is different to mine. Please let me know your top 5 tips for living with a chronic illness are by leaving a comment or through various social media which you can find on my sat in touch page. 

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