One of the biggest challenges of living with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is sticking within our energy envelope  when we really want to do something! This can be even more challenging when others really want us to do that something too!
On one hand, we might have every good intention of managing an event carefully, pacing ourselves  and perhaps limiting the time we spend there. But on the other hand, when we’re enjoying ourselves and others are encouraging us to continue, often those intentions fly out of the window. The inevitable result is a flare-up of ME/CFS symptoms or a full-blown crash!
So how do we avoid this roller coaster? How do we take control when our spirit is pushing for the delight and so are those around us? For me, it’s always been about three things: recognizing that I have a choice, making sure I get the right support, and assertive communication. Let’s take a look at each one.
Learning to Manage ME/CFS Symptoms
1. Recognizing choice.
With ME/CFS, sometimes, it feel like there are few things we can control. But how I manage and prioritize my time is one area where it’s up to me — I control how much energy I expend on a certain activity, and I remind myself that I can choose to continue if I want to. I can choose to feed my spirit and continue on the wave of my enthusiasm, but when I am making that choice I am also choosing the consequences. However, it might be worth a few days of feeling terrible to have this much enjoyment, especially if I can rest up over the next few days to get back on track.
Whichever choice I make, I understand that I am in control. If I choose the fun, I accept the consequential crash, and I do what I can to make myself as comfortable as possible while I wait for it to pass. If I decide to let go of the fun, I focus on the positive value of making my health and my ME/CFS recovery my number one priority.
2. The right support.
I feel extremely fortunate that several of my close family and friends are extremely understanding of the nature of my ME/CFS diagnosis . They are the people who have seen me suffer, the people who knew me in vibrant health and have recognized the full impact of the illness. These people are great to have around me when my enthusiasm is threatening to overcome me. They often recognize the signs of my fatigue  as early as I do, if not before. When they are going to be with me for an event, I always tell them beforehand how I’m planning on managing it, how I’m going to take breaks, how long I think I can manage to be there etc. and seek their support in staying on track.
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3. Assertive communication.
Sometimes though, that support isn’t available and the people around us may be less understanding of the constraints of chronic illness. It may not always be possible or even desirable to educate everybody fully about your needs as a result of the illness, even if they were willing to understand (which many people aren’t). But keeping quiet can mean you are pulled in directions in which you hadn’t planned on going.
It’s important to remember that you are responsible for keeping your needs met. You don’t have to explain everything in detail, but you may need to assert what you need out of a situation. For example: “I know I’m going to be having so much fun that I could easily get carried away, so I’m going to have to be firm about leaving in half an hour,” or, “Although I’m really happy to be here, today I need to sit quietly and take a back seat.”
Sometimes, we, as ME/CFS patients, put our own needs aside when the needs of others seem to shout louder for fear of being judged. Well, people will either treat you with compassion or they will judge you. Either way, that has nothing to do with you and everything to do with what kind of a person they are. You can’t control that so try not to let it factor into the equation of whether or not you devote more energy to something or decide your body needs to rest.
Own and express what you need out of situation as simply as you can; understand that sometimes there will be a conflict of needs, but don’t feel guilty about taking responsibility for meeting your own. Remember you are choosing health and a better future! You’ll have more to give in the long run if you look after yourself now.
A Personal Note:
A couple of months ago, my parents celebrated their 50th anniversary with a big party. I knew the festivities were going to take it out of me, and I planned a lot of rest before and after the event. I made arrangements to arrive late and leave early, and I had the support of a couple of close friends to keep me paced and on track. Although my Dad is usually very understanding of my health needs, he wanted to introduce me to all of his friends and relatives that I’d never met, and it was exhausting. I understood that there was a conflict of needs, that he wanted to show me off, but I also understood that it was my responsibility to make sure I looked after myself, so once I reached my limit I slipped away. In the end, everything turned out fine.
This article was first published on ProHealth.com on March 3, 2016 and was updated on February 11, 2020.
Julie Holliday is a holistic life coach and writer committed to helping people overcome their challenges and live a great life despite chronic illness. Writing as the ME/CFS Self-Help Guru , Julie shares tips on her weekly blog. You can also follow her on Twitter and Facebook .