Last Updated on February 3, 2024 by melissanreynolds
Welcome to the first update of this kind. When I began this blog, in 2013, it was to be able to share my experience with unmanaged chronic pain and fatigue and pregnancy. None of the specialists knew what to do with me. No one in my real life understood what I was going through. And so, through diary like entries, my blog began.
It’s evolved to share anything I learn that might help you. When I first started experiencing symptoms, I was young, and no one talked about fibromyalgia or chronic fatigue syndrome (ME/CFS). I was gaslit for a long, long time. Too many people, medical and lay, have told me some version of “just push through” or get on with it. And that got me sicker and sicker.
For the past 12 years I have improved dramatically. And part of that is by stopping pushing through, adapting and pacing, and accepting my current limits.
I’ve diligently shared anything I’ve learnt. It’s been exhausting, but it needed to be done because there was limited information out there.
Now, there is a plethora of information. Fibromyalgia and ME/CFS specialists who have written books and presented talks for us. Researchers trying to figure out how to eradiate chronic pain and fatigue.
So I return to my roots. More than 300 posts, 300 videos and four published books here for you. And I share my personal journey, in case what I learn translates for you. I’ll still share educational posts because there are key areas that are underrepresented. But I’d like to share the journey with you.
And the foundations of my recovery story will start with:
- Low dose Naltrexone
- Sleep and quetiapine
- Yoga Nidra and nurturing my nervous system
- Chiropractic care
- Movement that is appropriate for current abilities
- Hydration, nutrition (and correcting deficiencies)
- Treating other conditions
- A good pain management plan
- Appropriate and correct diagnosis
With these foundations solidified, particularly the treating other conditions part (namely endometriosis), and gaining appropriate and correct diagnoses, I’m working my way to the next level of improvement.
Please pay attention to this section – I’m not near normal
Please note that this doesn’t mean I’m in remission or that I’m near normal. I’m currently at about 60 or 70% with a lot of work (the above 10 things and the below things). But my quality of life is far improved on what it was. Every symptom has been improved by what I’ve shared. I have gone as far as current research/the medical system can offer for my conditions.
What I call healthy human habits or normal human needs
This is my next focus. What regular people should do to keep their human body and mind healthy. But we need to supercharge.
You can’t meditate or exercise your way out of fibromyalgia and ME/CFS (and related conditions). But they are part of the puzzle.
- Stress reduction/nervous system support
- Sleep (easier said than done with fibromyalgia and insomnia)
- Healthy boundaries (easier said than done in our culture)
Update on where I’m at with these February
It’s easy to feel like I’ve got it under control because, despite having to be very careful of the hot summer we’ve been having, my children have been away on holiday. However you approach it, children take a lot of energy. They are an endurance race.
But my key foci at the moment are
Fresh air and natural light first thing in the morning – When I get up, I sit by an open window or door). I also spend more time outside where possible.
Gentle movement – I have slowly built back up (again) since my major surgery last year. Now I am at around 6000 steps per day (8000 when the kids are around). I’ve added a one mile aerobic/toning walk every two days. I always need to adapt them, but I do the mile (15 minutes). I hope to build my strength around several tricky spots on my body and my energy. My next goal (with stops along the way) is to get to two miles/30 minutes.
Hydration – I got a 1.5 litre bottle with the marks to remind you to drink a certain amount at each notch (8, 10, 12, 2, 4 and 6pm) to get a sense on if I actually do drink as much as I thought I did. I do not. I was also reminded by a friend that I need to add the electrolytes before it gets desperate.
Stress reduction/nervous system support – I haven’t stopped doing my Yoga Nidra which serves as a rest (pacing), stress reduction and nervous system support. But I’ve found that I need to do it a bit later in the day and I can struggle to focus. My mind is a bit hyperactive. I’m told that’s a weird occurrence that signals you’re improving with ME/CFS. So it’s been a bit wonky.
Healthy boundaries – I’m a woman, with chronic illness and four small children. What even are boundaries? Life with four small children often feels like a runaway train and you just can’t catch it or change it’s direction. I’m working on it.
I’m also continuing with chiropractic care, which has been making a big difference.
Are you working on any goals? If so, do share in the comments!