Last Updated on June 22, 2023 by melissanreynolds
The most surprising part of getting better with conditions like fibromyalgia and chronic fatigue syndrome is the sheer amount of work it takes to maintain it.
I feel like no one talks about this part of the healing trajectory.
The middle ground. You’re not as sick as you were, but you’re far from normal.
You’ve improved and found a way to achieve what you need to. But you’re not 100% and your management techniques take a lot of work.
That’s a shock.
I used to be high moderate on the fibromyalgia impact questionnaire rating scale. Over 12 years I’ve slowly pulled myself to mild. Surprisingly, mild doesn’t mean near normal.
See the video here
How much work getting better with fibromyalgia is
Use sleep as an example. I now sleep fairly well, I get into the normal range for deep and REM sleep often and fall asleep pretty fast. It’s a dream come true.
But in order to achieve that sleep I must do many things. I can’t overdo it during the day (missing my Yoga Nidra guided meditation rest especially will make me so overtired sleep is poor). I follow a rigorous sleep hygiene regime (no caffeine after 10am, rare alcohol consumption is hours before bedtime, comfortable bed, regular bedtime and wake time etc.).
Would you like to try a free Yoga Nidra? And three other yoga classes designed especially for people with chronic pain and fatigue? Sign up here.
I take three things in the evening and generally start taking them at 8.30pm. I found they don’t work well when taken all together. So I take them 20 minutes apart. Starting with Recovery Factors, followed by quetiapine and then low dose naltrexone.
If I’m in high levels of pain, then they need to be managed. Or there will be no deep sleep.
After the medicine/supplement doses, I hop into bed with my heating pad. Read for a while. Turn off the light, do a body scan meditation if needed, and fall asleep.
My bed is the right level of firm vs soft. My pillow must be 80/20 down/feather. I need the electric heating pad and a pillow under my knees. I must lay on my back.
And then I sleep. And it’s good.
But it’s a lot of work!
Finding and holding boundaries as you’re getting better with fibromyalgia
The second surprising thing about this middle place is the fights I have to maintain it. With myself and then with others.
I find it difficult to maintain the boundaries. There are things I want to achieve. I have responsibilities and a family. They need a lot of energy.
It’s a constant balance with myself. I take a cost vs benefit analysis all the time. Is this thing worth the consequences? Can I make this thing more me-friendly?
It’s a whole brain game.
The final most surprising and most difficult thing of improving is others. The people around me. They see me improved from before. But they don’t seem to see all the things I must do to maintain it.
The amount of energy I expend to maintain my wellness, perform my responsibilities and stand up for myself is considerable.
Explaining myself is like a full time job.
Retaining the why so you can get better with fibromyalgia
But I remember, vividly, what it was like to live in very high levels of pain and fatigue with no reprieve. I know what it’s like to be able to do nothing to feel better. And I will fight going back to that tooth and nail.
This should be respected. But everyone has their own wants, needs and battles. So sometimes even open communication doesn’t bridge the gap.
And I’ve got to be OK with that. Being human, while best done communally, is a unique experience. And no one can understand my journey.
It’s just hard when you want to be understood and accepted.
If this is familiar, what’s your experience been like living in this middle place? Not in remission but not as sick as you were? How do you maintain the boundaries needed to maintain this level? And keep moving forward. Please share!
I’ll keep you updated as I learn too.