Another day on the chronic illness rollercoaster, and I’m tired. What felt like a flare a few days ago, doesn’t exactly feel like that today. Yesterday, my pain levels were much improved and the fatigue was less, too. Today, my fatigue was the same, but my pain was worse. I don’t know what to expect tomorrow.
Life with chronic illnesses is certainly crazy! You don’t know from one day to the next what you can expect. Over the years, I had grown very accustomed to severe pain and fatigue on a daily basis. When the 8mg dose of LDN was reached, it seemed that my fatigue was going to be so much better.
But, flares can wipe out any gains from a great new drug treatment. Hopefully, this will be what I can look forward to when the flare subsides. I really liked that new improved body. It certainly was no cure or pain-free, but the improvement was very noticeable.
I’m trying really hard to stay on my diet and huge list of supplements. Eating becomes a huge chore because of all the requirements. To try and make it more appetizing, I’m doing my best to try new recipes. Recipes with no sugar or delicious condiments can cause me to lose my appetite.
Some days, I just want to chuck it all and eat something good. Life is short…eat dessert (is what my hungry brain tells me). But, I committed to trying this better way of eating for at least 6 months to a year. I can’t very well know if the results will be worth it, but that’s how it goes.
What things have you tried to help your health improve? Have any of them been beneficial? Have some of them been a total waste? I really hope that you are all getting treatment options that are valid and work well for you.
Chronic Illness life is truly a life of ups and downs. As we feel like we’re about to crash on our never-ending rollercoaster, let’s keep trying things that are really helpful. If you possibly can, care for yourself.
@2020, copyright Lisa Ehrman
So funny Lisa – the first chapter of my book is called Riding the Chronic Illness Rollercoaster! I think we can all relate to that feeling. In fact, I used this phrase this week, as I have also had my ups and downs lately. It’s so frustrating, especially when you can’t figure out exactly WHY you are having a bad day after a good one! You’ve described it perfectly.
As for LDN, I don’t know how long you’ve been on it, but with LDN, less is more. It’s quite different from any other medications or supplements in the way it creates a cascade of effects in the brain. After my son and I had been on it for a number of years, I wasn’t sure it was helping any more. I read about it and asked other patients, who advised trying either a LOWER dose or switching to every-other-day dosing. We did the latter, and like magic, it was working again! Just keep that in mind over time, as it is the opposite of what you might think with other meds.
As for diet, yes, we switched to a Paleo diet (no sugar, no dairy, no grains, among other things) years ago. It was easy for me but harder for my son. This post explains all about a Paleo diet, the modified Paleo diet we eat, and how it has helped us – with LOTS of meal and recipe ideas! You don’t need sugar for flavor – it can come from lots of other ingredients. And we eat Paleo deserts, too! No need to go without 🙂 Hope this helps give you some ideas:
http://livewithcfs.blogspot.com/2017/09/eating-paleo-for-immune-disorders-our.html
Thanks for the great post!
Sue
Thanks for sharing those ideas and experiences. I’m going to read this post and see what I can learn from you. It helps so much when diet recommendations come from people who are in the same boat. 🙂