Chronic Rants

Well this is different. And I’m not sure what to make of it. It’s not bad, and I’d love to just

Yesterday’s visit to the shore wasn’t thoroughly exhausting!

go with the flow and enjoy it. But that’s hard when I don’t know why I feel this way. Not knowing why means that I don’t know how long it will last, or what I can do to help it along.

But I’m getting ahead of you here. I should explain.

It’s common to have fatigue with chronic illness. A lot of people say that pain causes fatigue, but that wasn’t my experience. Yes, pain can be tiring, but there’s a difference between “tired” and “fatigued.” If you’ve never felt fatigued, it’s hard to explain. Have you ever had the flu? Have you felt so exhausted and drained, it was like something was sucking the life right out of you? Was it hard to muster the energy to sit up, much less walk across the room? That’s fatigue. That’s what I felt many days. But I had pain for 8 years before that ever started. So it wasn’t only from the pain.

I’ve had a lot of time to think about things, and I believe the fatigue started after a bout of mono when I was 20. It was minor back then. It got worse and worse over the years, but it wasn’t until my early 30s that it became disabling. I couldn’t work at all – even the idea of part time work was laughable. Some days I couldn’t shower. Many days I couldn’t leave the house. It was bad.

If you’ve read this blog for a while then you know I’ve worked hard to fix the fatigue. It’s improved bit by bit, not all at once. Each thing helped. My new diet helped. Reducing pain helped. Improving sleep helped. Various supplements helped. Changes to my lifestyle helped. More diet changes helped. More sleep changes helped. Everything helped a little bit, and it added up to more and more improvement. Life felt manageable. Then last month something changed.

I didn’t notice at first. I thought I was having a good day. But that turned into several good days. And then a good week. I used to have 3-5 recovery days per week at my worst. As I improved that number went down. But lately I noticed that I was having even fewer of those days. And when I did have one, I didn’t have to rest nearly as much. Maybe I couldn’t run errands those days, but I could often do little chores around the house.

Then I realized I was doing more per day. Whereas a short time ago I could only do 1 activity per day, suddenly I could run an errand in the morning and still feel up to doing something in the afternoon! What the….? Ok, this wasn’t every day, but it was more than once, and that was shocking.

Then the most shocking thing of all: in the last week I’ve been waking up naturally between 6am and 7am every day and I actually feel ok when I wake up! That has never happened in my entire life (except when I was on Prednisone, of course.) Until recently I rarely woke up before 8:30, and that was with an alarm. Now, after reading in bed for a while, I get up and feel…. not bad! Feeling not bad in the morning is a big deal when you have chronic illnesses!

I think I might know what’s causing this. I started a new supplement to help stabilize my breathing for the sake of sleeping better. This seems to have calmed my sleep apnea and I feel that I’m sleeping better. Even on the nights I don’t use my sleep machine as long, I still get more benefit.

But could that be it? It seems so…. simple. Of course, it isn’t simple at all. I’m sure it wouldn’t be working if I hadn’t changed my diet, changed my life, started using the sleep machine, started those other medications and supplements, and all the rest. Still, could that be it? I haven’t changed anything else.

But the fatigue isn’t all gone.

And that makes sense. It’s not that the fatigue is gone and I’m all better. It’s that the brutal fatigue is gone and it’s been replaced by something else.

I’ll use a cell phone battery to illustrate what I mean. Before, my energy was like a cell phone battery that wouldn’t fully charge. It would only go up to 30% many days, 50% others. But the higher it was, the faster it would drain. Cooking dinner would use twice as much battery as it would for a healthy person. Sitting upright and watching tv used up battery energy. Sometimes it would drain quickly for no apparent reason.

The most striking difference is that now I wake up with my battery at 80% every day! This is amazing! Watching tv doesn’t use up battery energy at all! Cooking dinner uses up the battery a bit, but not nearly as much as it used to. In fact, no activities use up the battery as much as they did just 2 months ago.

Before I would go to bed at night with the battery at 3%. I could barely drag myself to bed. Now it’s at 15%. I’m tired and sleepy. I’m ready for bed. But if something important suddenly came up, I could take care of it.

This is incredible! It’s a world of difference from where I was such a short time ago. I can do more in a day and it isn’t as hard to do things. I haven’t had that dragging feeling. I haven’t felt like someone stuck a vacuum into my side and was sucking out all of my energy. Sure, I haven’t experienced 100% battery (which is what I assume my peers feel when they’ve slept well and aren’t sick) but that’s ok!

It’s only been a few weeks and I don’t know how long this will last. I want to enjoy it, but I don’t want to overdo things. At the same time, while I have more energy, I also have more pain (hello, Spring!) I took a walk earlier. I had the energy to walk further, but my joints strongly disagreed. So be it. I don’t mind. I still can’t believe I took a short walk and didn’t have to collapse as soon as I got home. Instead, I was able to sit and write this way-too-long post!

Please wish me luck. I am really really hoping this is the start of a great new health chapter in my life! Changing the fatigue like this wouldn’t fix everything. But it would be good enough for me!!