“Oh, you just need a good night’s sleep”
“Oh, you just need a good night’s sleep”, “Everyone gets tired”, “You need to stop eating sugar/be vegan/eat more meat/lose weight/exercise more”, “You look fine/don’t look sick”, “Maybe it’s depression”, “Oh, you’re just getting older – it happens to all of us”, “You need to think positive/stop focusing on being sick”, “It’s all in your head”, “It must be nice – I wish I didn’t have to work”.
Chances are, if you’ve been diagnosed with Chronic Fatigue Syndrome and/or Fibromyalgia you’ve heard at least one of these, and plenty more. I certainly did. I was sleeping up to 20 hours a day, had shoulder pain so bad that I couldn’t brush my hair, and constantly felt like my brain had turned to mush (and these were just a few of the things that I was dealing with). Add in the fact that you can’t work, miss out on special occasions, etc, and it becomes really overwhelming. I know. This is where I was in 2014-2016 (although, in hindsight, I think it was building for a few years before that).
I knew something was very wrong, but didn’t know what. Thankfully, one day, I ended up going to a different GP as my usual one was booked out. This new GP actually listened to what was going on with me, then sent me to a rheumatologist who was able to diagnose me almost instantly. You’d think after being sick and not having any answers for that long, I’d be pleased to know what was wrong, right? Well, no. It took me a good 12 months to come to terms with my diagnoses. Most of what I knew about CFS was derogatory. I remembered in the 90’s it was called the “Yuppie Flu”. People assume you’re lazy, or making it up, or just need to eat better and exercise more, and I judged myself in that way, too.
A pathway forward
Unfortunately, it’s not that easy. Sure, eating a better diet, exercising (to your capability), decreasing stress, and having good sleep patterns are very helpful, but I think the one thing that has changed my life is starting Low Dose Naltrexone (LDN). On a bad day, I’m probably back to 75% of what I was like before I got sick. On a good day, I’m at 90%. No, I’m not back to where I was, but where I was when I got sick, wasn’t a good place.
I’ve now completely changed careers. I’m studying part-time, and I’m working for myself. Sure, I’m making less money, but I’m loving every minute. I have less friends, but the ones I have I know I can count on. I sleep on average eight hours a night, and don’t need to sleep during the day. My fibro pain is non-existent, and my brain fog has almost completely lifted. I can actually go out and enjoy life, like it’s supposed to be.
I really do understand the hopelessness that you may be feeling, but there is light at the end of the tunnel. I can’t guarantee that your life will be exactly the same as it was, but it can be just as good.