I have to accept a certain level of responsibility when it comes to my M.E.
And I don’t always like that: I don’t always want to accept that.
The vast majority of the time, my suffering is not my fault. It’s out of my hands. M.E. is cruel and I am unwell every single day.
But ten years in, with even the basic understanding that exertion and activity can/will cause an exacerbation of symptoms, I must accept that sometimes (not often, but sometimes!) I do have to bear some of the responsibility for some of the suffering.
For example, on a Good Day if I don’t quit while I’m ahead (and I don’t always because I am a human being who is often desperate to live a little!) then the next couple of days after that Good Day will be far from pleasant.
If I go so wild as to brush my teeth AND have a 15 minute video call on the same day, I’m asking for trouble truth be told! And I know that. And because I know that, I must accept responsibility when the suffering comes.
I ended up really ill the other day. The day before I’d done far too much (typing that is such a struggle because I don’t want to admit to it!) But I really overdid it. It’s not hard to do at the moment but still.
I did far, far less than the average person, and far less than was my normal pre-relapse, but for me it was borderline ridiculous. The next day I tried to convince both myself and my husband that I was coming down with a bug. I wasn’t, it was Post Exertional Malaise. But the denial was strong! I refused to take responsibility to my actions.
I don’t think anyone would blame me for wanting to live a little, but to do it repeatedly, time after time after time, and then moan, wallow and wonder why….that would be on me.
Whether I like it or not, I cannot live that way. To constantly live in Boom and Bust, when I have the choice not to? To be in complete denial about my limitations and restrictions? That’s on me.
There is little quality of life to found there.
I am speaking of my own personal experience. For the duration of my M.E. I have had the privilege of being able to practice Pacing. But every once in while I will throw a mini-tantrum and just refuse to Pace. Because I don’t want to! Because why should I have to! Because it’s so totally unfair that I can’t do what I want when I want!
But life is unfair. Life with M.E. is even more so. Kicking against it doesn’t make it any less so.
Like all things, acceptance comes and goes. I am still adjusting the my new normal after the relapse.
I don’t have to like my physical limits, but I do have to work on being in complete denial of them.
M.E. myself and I 
Hi Anna,
Thanks for your post. I and my husband know all about pacing. My husband was diagnosed 34 years ago with CFS. He was a runner and noticed over 6 months that his running time had increased an additional 30 seconds for each mile he ran, and he felt more fatigued than usual after the running and in general. His primary symptom, however, was ice-pick headaches & he had them 24/7. We live in Pennsylvania and we went to several doctors, but no one knew what was going on. We finally made an appointment at a prominent research hospital, The Cleveland Clinic, which was an 8-hour drive one way. Fortunately, he met a knowledgeable doctor who spent 2-1/2 hours with him. We eventually found a local infectious disease specialist who worked with him for many years. Over those 34 years, he learned to manage and reduce medication, to pace himself on the days he felt “good”, and set short term goals. Our children were young, so his goals often focused on being able to work till they were through elementary school, then middle school, then high school. He also found that exercise (usually running or walking) is what kept him moving and active, and it still does. He is now retired and the pressure of work is gone. God has blessed his efforts and answered many prayers. He no longer has headaches; he can sleep most nights without medication; we can travel to see our grandchildren. His greatest challenges are neurological issues now and we continue to research. I just wanted to give you some hope that you can live with CFS/ME and pacing yourself and listening to your body is the best thing you can do. I hope when you’re my husband’s age, you can write the same to someone else!
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