24 Truths About Living with Fibromyalgia and ME/CFS

I’ve shared my journey living with multiple chronic illnesses for a long time now. Trying to mind the balance between optimism and realism is difficult. While my health has been on an upward trajectory, there’s a lot of ups and downs within it.

I choose to keep my resources positive and hope focused. I like to leave you with practical ideas to try. But there’s benefit in sharing the aching truth of it too.

In the spirit of being transparent I want to share some truths to my experience with fibromyalgia, ME/CFS, orthostatic intolerance/POTS (we haven’t got official answers yet), endometriosis (for which I had excision surgery and hysterectomy) and interstitial cystitis. These are things I would love people in my life to know and I’m sure you’d like people in your life to know.

I’ve created many images to go with this post that you’re welcome to share on your social media if you wish. This is part of my 2024 Awareness Month contribution.

24 Truths About Living with Fibromyalgia and ME/CFS

1. There is never a moment where my body is not in pain or fatigued.
   
2. I have to take a rest every single day. On the days when I don’t or when it’s interrupted, I feel awful. And then sleep worse. And have additional pain and fatigue the next day.
   
3. Learning is one of my highest values, yet my memory and cognitive function is impaired, especially when I’m sleeping more poorly.
   
4. I can’t physically stay upright or control my heart rate when it gets too hot.
   
5. It took 20 years to be diagnosed correctly.
   
6. People think they can tell you to “push through” and tell you you’re not trying hard enough. They can also make you feel like you’re making it up. And that hurts. (Also NOONE has this right, no exceptions).
   
7. I can be exhausted all day, and still sleep poorly overnight. In fact, being overtired makes sleep harder.
   
8. Going to a medical professional with a symptom is like Russian roulette, I don’t know if I’ll be met with understanding or even answers. I worry that one day a doctor will refuse the low dose Naltrexone (which helps me a lot).
   
9. I do all the “right” things and I still have symptoms every single day.
   
10. I get physically sick when my symptoms get too high and if I try to stay up too late (nausea, light-headedness, inability to stay upright).
    
11. I’ve meditated almost every day for 10 years. And it’s the only way I can get real and true rest, and a break from my body.
    
12. I can never truly take a holiday, because going away is harder than managing at home.
    
13. I’m damn proud of myself and what I’ve achieved.
    
14. I share my journey online because I don’t want anyone else to go so long without support, understanding or treatment.
    
15. My stomach is rarely comfortable.
    
16. I love to exercise, but must be super careful about how I do it. Minding my heart rate, the heat, my knees, sacroiliac joints and neck.
    
17. Despite serious, debilitating conditions, I still also experience normal life irritants, such as getting the cold or flu. Or being overwhelmed by expectations.
    
18. I can do more, but I’m learning how not to – for the sake of my quality of life. Because pushing through won’t make me better.
    
19. I can only sleep on my back with a specific pillow for my neck, an electric heating pad, a medium soft mattress and two pillows under my knees. I awaken easily. This is why it’s difficult to travel, one bad night and it sets of a flow on effect that results in higher pain and fatigue levels.
    
20. A medical professional outright told me that no medical specialty in NZ cares about the conditions I have.
    
21. I feel guilt about the burden I am on my family, I don’t want them to miss out on anything, but I want to join in with them (with modifications).
    
22. I’m really mad about my limitations. And more furious about how I’ve been treated over the years.
    
23. I’m scared that my health will go backwards. When symptoms worsen, I worry that I’ll go back to what it was like before. Logically, I know it can’t because I know more and have more coping mechanisms. But there is an element of trauma involved in living with high symptom levels, nothing to help and having no one understand.
    
24. I believe I’m in the middle of living my recovery story. I believe I’ll improve. I’ve been smacked down a lot but that little ember of hope is still burning. And even if I don’t improve further, I am still deserving of happiness.

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