Feeling fatigue frustration

January 20, 2018

Fatigue is my most frustrating symptom. Unlike the others, I can’t push through even small amounts of it. Unlike the others, it feels vague and a little unreal. And it stops me from doing so much.

My pain has been better lately. I can work around it. The nausea is still a major problem that causes me a lot of anxiety, but it doesn’t happen too often. But for some reason, the fatigue has been worse over the last few months and I just can’t fight it. I can’t push through. I can’t work around it.

I’m going out less. Exercising less. Doing less. Feeling less than.

It’s hard to explain this feeling to people. It isn’t a matter of going to sleep earlier or waking up later or taking naps. I have no reason to think I’ll feel better tomorrow or next week or next month until we figure out the cause and do something to fix it.

And yet I want so badly for it to go away.

This isn’t as bad as the fatigue I had 5 years ago. It took years to improve that, and I want to avoid getting back to that bad place. Still, this level is also limiting, and irritating, and oh so FRUSTRATING!

There is so much I want to do. Today is unseasonably warm and I was going to take a walk around a local Pond. That walk always makes me happy. I’m not in too much pain. But I just don’t have the energy. So much for that plan.

I have lists of things I both need and want to do, and I feel like I can’t do any of it today. Will I manage more than watching tv in my pajamas? I have no idea.

I’m frustrated. And I hate it. I am used to pushing and fighting for things, and I can’t do that. If the fatigue is being caused by an adrenal problem (which is looking likely as we’ve been running tests and ruling out most other potential causes) then pushing and fighting will only make it much worse.

There are no answers today. All I can do is hope it doesn’t last too much longer. And try very hard not to blame myself for not doing more.

So I am writing this in part to complain (hey, what did you expect from a blog titled Chronic Rants?) and in part to offer support to everyone else dealing with fatigue. It can stop us from working, from socializing, from buying groceries, from cleaning the house, from taking a walk, from sitting up. Fatigue sucks. And I hope yours and mine improves very soon. And in the meantime, I hope we can all find good audiobooks and tv shows for when we have enough energy to enjoy them.

(On a side note, I love audiobooks, so if you want suggestions of what to listen to, comment with the kind of stuff you like and I’ll be happy to give you some recommendations! I listen to most genres – adventure, chick lit, historical fiction, murder mysteries, all kinds of non-fiction, etc.)

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When fatigue becomes something else altogether

May 18, 2016

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

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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!!


What’s beyond fatigue?

September 12, 2014

Regular readers might have noticed that I haven’t been around much the last few weeks. It’s pretty obvious from the “Posts by Date” in the column to the right, anyway.9-12-2014 4-32-39 PM

Sometimes I miss writing because I’m busy doing fun things. Sometimes it’s because I don’t have anything in particular that I want to write about. But far too often, it’s because I just don’t feel up to writing.

I’ve wanted to write several times this week. But those topics have to wait because I’m just too tired to do anything productive these days. Now it’s 4:38pm and I just shut off the tv after watching for several hours. I feel well enough to sit at my desk and type these words. But I don’t know how long it will last.

And I struggle to explain this to friends who don’t have chronic illnesses because I don’t know how to describe it. I’ve said it before and I’ll say it again: we don’t have the vocabulary we need to describe these feelings. Sometimes I don’t know how to explain different kinds of pain or different kinds of nausea. This time I don’t know how to explain this feel of being so exhausted that just having a conversation with someone is tiring.

I canceled a date tonight. He was very sweet about it. He offered to bring takeout and a movie to my place so I wouldn’t have to do anything. But he doesn’t understand – we’ve only been out a few times, so I’d feel the need to talk to him, and talking would just take too much effort. How do you explain that to someone who’s never felt that kind of exhaustion? How do you explain the feeling that picking up a remote control is exhausting? How do you explain that reading takes too much energy, because even if someone else holds up the book, you just don’t have the energy left to think?

I felt this way in the past, but when things improved, I really hoped I’d never feel this way again. No such luck. Now, as I’ve felt the fatigue getting worse and worse over the the past few weeks, I’m left to wonder: what’s beyond this level of fatigue? What happens if I continue to feel worse? Somehow, I think I don’t want to know.


A new approach to fatigue: fixing sleep

February 28, 2014

It amazes me that some people go to sleep at night, sleep for 6-8 hours, and wake up feeling refreshed, energized, and ready to start the day. I don’t think I’ve felt like that more than a few times in my entire life. But I’d like to try feeling that way more often.

Fatigue is a tricky symptoms. It can be caused by so many things. I’m pretty sure that mine is caused at least in part by my thyroid issues and adrenal problems, because as I fixed my adrenals, I felt better, and when I started dessicated thyroid they fatigue improved even more. I no longer fall asleep while reading (except in bed at night), I don’t nap during the afternoon, I can leave the house three days in a row without feeling like I’m going to collapse. Then again, I still have a ways to go. I can’t leave the house every day for a week, even if it’s only for small things. I can’t do laundry in the afternoon and then go out with friends for dinner. Spending an afternoon chatting with a friend is completely exhausting. I’m so grateful for all of my improvements, but I want to improve even more.

I’m trying new medications for my thyroid problems, and I’m hoping that will help, but I’m not going to assume that’s the solution. What’s if there’s another contributing factor? That’s why I saw a sleep doctor. This guy is one of the best around here, and I really liked him when I saw him many years ago. At that time, I did a sleep study that showed some apnea, but not enough for a cpap machine. That’s the machine where a mask over the face at night helps the person breathe. The doctor found that my circadian rhythm was off, like I was in permanent jet lag. He told me to take a very small dose of melatonin and use a blue light (sometimes called a sun lamp) in the mornings. That made a huge difference, and for a while I felt much better.

With the fatigue over the last couple of years, it seemed worth checking out my sleep again. Besides, I felt like I wasn’t sleeping well. I was waking up just as tired and sleepy as I’d felt when I’d gone to bed. In the last year, I’ve been having dreams that make me feel like my sleep isn’t as restful. In the last few months, I’ve been waking up a lot during the night. I knew something was wrong.

The downside of seeing such a top doctor is that he has very long waiting lists. I made an appointment in June and finally saw him in December. He suggested a few changes to the melatonin and blue light, and ordered some tests. One of those tests was a sleep study and his report on it popped up on my online hospital account today. (I’ll find out more when I meet with the doctor next week, but I can see notes as soon as he enters them into my records, which is awesome. I wish all of my doctors’ systems did this!) According to the doctor’s notes, I have sleep apnea and need to use a cpap machine. Ah hah! I knew it! Ok, I’m not happy about having to use the machine, especially as a single person who hopes to one day share my bed with someone else. On the other hand, what if this helps?! I can’t imagine anyone would feel energetic without ever getting proper sleep, so maybe this is one of the keys.

I don’t think this sleep issue is my entire problem. But maybe, just maybe, the sleep, thyroid, and adrenal issues combined are what’s causing the fatigue. I’m already addressing the thyroid and adrenal issues so maybe, just maybe, fixing the sleep problems will make me feel well enough to slowly, eventually, get my life back. Maybe I’ll be able to socialize more, get a job, and just feel betterOk, I’m probably getting ahead of myself. It could take time. But what if…..?


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