I’ve recently come across the writing and videos of Dan Neuffer (@cfsunravelled on twitter), a man who has achieved full recovery from ME/CFS. Not only have I found his thoughts and experiences to be profoundly inspirational and personally relatable, he has a great deal of wisdom to share.
The video I want to share today talks about the journey to wellness, where to start, the opportunities we can take advantage of and how attitude about the bigger picture can make all the difference between remaining mired in it or slowly advancing our way forward. The video is 8 minutes long and completely worth your attention.
The most important take away is to understand that every advancement toward recovery you make, no matter small, is a victory that can be built upon. In fact, the only way to do it is really one step at a time, otherwise you never truly know what exactly is effective or what to blame if something goes wrong in the trial period.
By the same token, no matter how many set backs you incur, you aren’t really losing ground either. Therapies that don’t work are simply ruled out and you’re able to move on to others. But also remember this is a cyclical illness complete with flare ups and times where you might feel even close to your good old self. Sometimes that might have something to do with actions you’re taking, too much exertion, the wrong meds, poor diet or vice versa. Other times, it has no apparent cause. These things can be difficult to determine, which is why it’s so important to make changes slowly and deliberately.
Once you find a winner and that therapy brings you some improvement then it’s time to add something else, beginning the process again and so it goes until before you realize it, you’re actually spending time out of bed and it no longer feels like a punishment fit for a serial killer.
If you start to go downhill, this doesn’t mean you toss everything out and assume it doesn’t work anymore. You make sure you aren’t doing something else to sabotage your recovery, like not getting enough rest, or see if maybe you’re developing an infection or could use a steroid injection to fight off some new brain inflammation.
If this doesn’t work, then you start to tinker with your dosages and go back to your research, attempting to get your mitochondria back in working order. Like AA, it’s a one day at a time kind of thing and you, not your doctor, must be the owner of your recovery. Your doctor is simply a partner in that recovery.
I myself am spending the day in bed, the last place I want to be, but I earned it, running around the last week acting like a fully recovered healthy person. I’m not in bad shape, but I’m listening to the early warning signs. So here I am setting up camp mid-mountain so I’ll be fully refreshed tomorrow and ready to start my hike again tomorrow.
There will be many more stops along the way. I’m a long way from even spying the peak with binoculars, but I know if I keep taking it one step at a time, eventually, I will get there, flag in hand.
If you’re interested in learning a little more about Dan, check out this incredibly touching blog post on Health Rising where he reflects back on his illness and how difficult it was: Nobody Knows What It’s Really Like to Have ME/CFS &FM.
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